I’m sure you have heard others reference the saying “turn lemons into lemonade.” It implies taking something bad and turning it into something good. Our pastor challenged us to think along those lines but with a different twist. When something has you down or something bad/inconvenient happens, try thinking about why that’s a good thing. I have to admit I have difficulty doing that much of the time but each day I try to think of at least one thing good about that day, be thankful for it and share it on my Facebook page. It helps me to, at least once a day, think of something positive. I’ve been pretty negative lately because Lynn and I have not been feeling well and I’ve spent three weekends in the last two months in the emergency department without any answers regarding what is causing me to have abdominal pain. I know it’s nothing serious but I don’t know what it is and I’m getting tired of it. Anyway, I’m also tired of being so negative. Therefore, my post today is my attempt to take this challenging period in our lives and make it into something positive. Here goes….
There’s always a lot of hype that surrounds holidays, and Valentine’s Day is certainly right there keeping pace with all the rest. It’s supposed to be a day to celebrate your love for one another in some special way with gifts, dinner out, and other more intimate ways of expression. I’ve never been overly romantic; though Lynn was. He used to always send me flowers where I worked or made me some type of special decorative object. He always did something special because he enjoyed showing his expressions of love in his own way.
Now that he is unable to get out on his own, he isn’t able to do those things anymore. He can’t make anything since his hands don’t work and he can’t order anything to surprise me since I manage the household funds and would have to type in the credit card information. He can’t take me to dinner because he tries to stick to his special diet and by night time he’s pretty wiped out anyway (plus this time of year we avoid crowds anyway due to cold and flu germs).…he can’t show other more intimate expressions of love independently—other than a kiss. He can’t put his arms around me or hold me or cuddle with me unless I position him like a manikin and honestly, with my arthritis pain and muscle spasms, that’s just not something I want to do for a few minutes of physical closeness.
You would think that this loss of physical intimacy might have adversely affected our relationship, but I honestly think just the opposite is true. Before Lynn became so dependent on me, we both were VERY independent souls. Both had previous marriages that did not succeed and both had learned to be both a mother and a father, a housekeeper and a maintenance worker, a CEO and a front-line worker. Learning to share and include one another was not always our first instinct and that oversight often caused conflict. We may have had physical intimacy but we didn’t have as much emotional intimacy.
While it may sound strange to say this, Lynn’s loss of mobility has lead to our relationship actually becoming much closer than we ever were when we could go out and participate in things together. Now we have to share everything. If he has an itch, I have to scratch it. If he needs a bath, I have to give it. If he has a problem…he now tells me about it. There is a strong connection that bonds us like nothing we had before. No longer am I shut out of his life; we truly are one.
Thus the week before Christmas and all through the house
Not a creature was stirring not even my spouse
A small Christmas tree had been placed on a stand
So he could “see” Christmas from his power wheelchair
The last of our children this past year had been wed
So most of my parenting worries I’d shed
While Lynn takes a nap, I put on many hats
I cook and I clean and on my keyboard I tap
When out of the quiet, I hear Lynn start to chatter
I listen intently wondering what’s the matter?
“Hey Sweetie,” he calls, “can you come get this trash?” Now what is he doing? I muse as I dash.
The room as I enter looks peaceful and glows
With the lights from the tree and the wreath’s bright red bow
When what to my wandering gaze should appear
But his hand inching forward and heading straight to the gear
With a fear of disaster, I step over a split drink
Knowing in a moment he’d cross the room in a blink
More rapid than careful toward the joystick I aim
As he questioned my purpose and asked me my name.
Waking up a bit more, he asked, “What’s that you’re fixin?”
I give him my answer and head back to the kitchen.
In less than ten minutes once again he does call,
A deep sigh I do make and turn back toward the hall.
As I care for his needs and my hands I do dry,
I think of our blessings and tears of joy I do cry
I admit that at times my thoughts are quite blue
But I know in my heart that our faith is our glue
When I fear we won’t make it, I see I have proof
That our Lord is providing with His Word as the root.
His promises have power; His love does abound
His voice is a whisper, it makes not a sound.
Through Christmas He gave us the hope of new life
In His wisdom He gave me to Lynn as his wife
With God’s grace and Lynn’s love, there is nothing I lack
Through my service to both, a small portion I give back.
As I settle back into my chores for the night,
I pray for endurance, understanding and insight.
With a smile I keep going, there’s more to get done
But Christmas is here and we’ve been saved by the Son.
Merry Christmas! (Photo credit: Wikipedia)
I’m ashamed to say that I often use this blog to vent. When I’m tired and discouraged, I find it therapeutic to talk it through on this blog knowing that there are those out there who have gone through the same things or are experiencing them now, and that helps to know I am not alone. When I receive comments of support and encouragement, it’s better than my own private therapy session. So I’m thankful for those who listen to me whine and share and to those who share with me as well.
I’m thankful for my husband. Though providing for his care is overwhelming at times, I’m thankful that he is here for me to care for. I’m thankful for his encouragement and his caring. He’s always looking for ways to make my life easier and to provide his support. I admit that I often don’t allow him to care for me because I’m so used to caring for him, but I appreciate his reaching out to me.
I appreciate his humor; he is often able to see the funny side of life. I appreciate his faithfulness; he strives to be a faithful servant of our Lord, Jesus Christ, with whatever abilities he has. I appreciate his knowledge; I’ve met few people who know more trivia than he does! Plus he seems to know something about just about anything!
I’m thankful for Lynn’s abilities. His mind is very alert and as I said above, he’s very intelligent and useful. Though he cannot physically do many things, he can tell me how to do them or guide me on how to get someone else to do them. Though he can’t write, he can speak and he can see so he uses software to write on his behalf and therefore, remains productive and has goals. Though he has selective hearing, his ability to hear has not been touched by MS. When he puts his mind to it, he can clearly hear the same as I do. His essential organs still function to keep him alive and healthy though not untouched by medical limits. Though he was a gourmet cook and can tell what’s in a dish by taste and though I tend to burn more than I like to admit, he always compliments what I make him and phrases my cooking to others.
I’m thankful for my job, my boss, my staff. I love what I do and where I work. I love the people I work with and for. Their encouragement keeps me going and the work gives me purpose and reward…as well as enough income and benefits to provide Lynn with the care he needs and both of us with all our essentials and many of our wants.
I’m thankful for my children and their spouses and my awesome grandson who brings us so much joy with his love of life. All of our children would drop whatever they are doing at a moment’s notice to come to our rescue if needed. We KNOW we are loved by them and we know how fortunate we truly are to have been blessed with such good people in our lives. Not only do we love them as our children but we love and respect who they are as individuals in this world. We are truly blessed by their presence in our lives.
In the same way we are blessed by our extended family. Lynn and I both have wonderful, caring, and supportive parents and siblings. Each side of our family gives us love in abundance and it’s so special to spend time with them when the opportunities come.
I’m thankful for our church family. Our church family truly walk the walk of Jesus’ loving example. Gethsemane Church of Christ is a powerful example of walking the faith; of giving and giving and giving through God’s love; of reaching out to show they care and of never forgetting that you exist. The last we were able to go to church was in the fall of 2009. I was rehearsing with the drama team for Christmas. Lynn went into the hospital and they had to find a substitute for my part. Though I was replaced in the role, they never replaced me or us in their hearts even though we’ve been “out of sight” and could have been “out of mind” for some time now. They have never stopped caring and for that Lynn and Eli enjoying a ride
we are truly thankful.
I am most of all truly thankful for the knowledge that I have a Savior who will forever be with me. It’s amazing how He faithfully meets our needs. He doesn’t remove the challenges; no Lynn still has MS and my arthritis is making it more difficult by the day to provide his care; but He gives us the resources we need just in time; every time. Sometimes His answer to our cries is “wait” and sometimes it’s “no” but it’s always, “I’m right here; just hang on.” He is our safety net and the light in the storm. Always loving; always caring; always there…forever and ever.
For all these things and so many more, I am truly thankful and awesomely blessed.
I read an interesting article on the Caregiver Space this week which has led me to think a lot of taking care of myself and why I don’t. The article was called “6 Reasons Why Caregivers Don’t Self-Care (the way you’re telling us to)” http://www.thecaregiverspace.org/blog/6-reasons-caregivers-dont-self-care-way-youre-telling-us/ It got right to the heart of why; at least for that person. Of course, some of her reasons were not the same as some of the reasons I have but many were very similar.
Here’s my version of her same theme:
1. Take a walk – As I’ve mentioned before, I work from home and one day a week (sometimes more) I go into the office. On those days I usually have a lot of meetings to attend. My office is about eight blocks from where those meetings usually occur so I walk there although I could wait on a transportation service that comes around regularly. I walk though because I never get outside except to walk the short distance to my mail box. I enjoy the outdoors but if I go outside for any length of time I have to set up the baby monitor and constantly clean up to go back into the house to address what Lynn needs. Therefore, getting into a major “dirty” project is not something I do often. Furthermore, I cannot walk any distance from my house since the baby monitor does not project that far. If I want to go anywhere for more than 30 minutes, the concern is that he will need to be cathed and will have an accident if I can’t get to him promptly. Therefore, I do not go for walks.
2. Use a treadmill – I actually have a very nice treadmill in one of our rooms that Lynn used before his balance got bad. I had every intention to start using it again because I realized as I walked up the hill to those meetings I mentioned above, I become quite winded. So, I had my stepson clear me a path to the treadmill…I have not gotten on it yet. What I’ve realized is that to use the treadmill requires prep time and cool down time plus dedicated time to walk. Timing the ability to do that requires coordination of activities with Lynn’s bladder and other needs. Also, I work seven days a week so that I can keep up with my office work since I have so many interruptions during the week. Therefore, if I’m not doing necessary house things like cooking and cleaning, or necessary Lynn things, I’m working and I truly do not have a spare 30 minutes in there anywhere.
3. Soak a hot bath – When you have so many things to be done in a short amount of time, relaxing in a hot bath does not seem to be a priority. For me, I jump in the shower, maybe take a few extra seconds to enjoy the heat on my muscles but then it’s back out. I shower with the door to the bathroom open so I can hear him if he needs something right away. My first stop (often before fully dry) is to check on him and often he’s calling for attention before I can do that.
4. Hire help – yeah right. Most people assume caregiver professional help is paid by insurance. Wrong! It’s not covered by insurance and it’s not cheap. Plus you have to orient whomever comes over to his “routine” and you need to be vigilant that they are performing their duties as specified. I would love to have paid help though but I already have so much debt related to buying the things he needs to feel better that I have no extra income.
5. Help from family and friends – we are blessed to have many kind and loving family and friends who help us out. I truly don’t know what I would do without them. One such angel just left my house after cutting the grass, weed-eating, and cleaning up leaves. All this he does without being asked. He just shows up, does the work, and leaves without a word. He didn’t even come into the house today because he might have shingles and didn’t want to expose us. See what an angel he is? We have many such angels in our lives and their love and assistance helps me to manage all the chores and care needs I have that take me away from being available to Lynn. I truly don’t know how those of you who do not have this support make it.
6. Get plenty of sleep – LOL. How I wish that was possible. On average, I get 5-6 hours a night–occasionally less (usually when I have to go into work); rarely more (maybe on a weekend if we don’t have someone coming over to help us with something). I usually get to bed between 2-3 a.m. I get up most days between 8 and 9; however, I usually am up twice during the night with caregiver duties so I’m always sleepy; always tired. I survive on caffeine – either pill form or coffee. I can’t always drink the amount of coffee I need due to stomach irritation but I’ve found caffeine pills help. I try to limit using them until I have to drive but I am honestly dangerous on the road much of the time without them. I get so sleepy driving that I fear I’ll have an accident. There are times every day around 4 pm. that I truly cannot keep my eyes open and they shut on their own. If I’m driving home from work at that time, after 10 minutes on the road, I catch myself nodding off so I have to stop for coffee or something to eat if I don’t use the pills. Yeah, I know I shouldn’t but when you weigh car accident vs. effects of caffeine over time; caffeine wins.
7. Keep your weight under control – See #6. I eat to stay awake; to give me the energy to go on. I eat whatever I can eat cold and fast. I don’t have time to cook for myself because my cooking time is devoted to making Lynn’s special meals. If I eat his stuff, I have to spend more time in the kitchen which means I have less time for my job and need to work more on the weekend to make up the time. So I eat already prepared things. Most are high calories unfortunately. Okay, I admit, that’s also an excuse. It’s one of the ways I pamper myself and I admit I use it as self-indulgence. So…come on stretch pants.
Since I’ve started writing this blog, I’ve been interrupted three times and been pulled away at least 15-30 minutes each time. That’s why I can’t do anything for myself. That’s my real “why”. Self-care takes times and time is not something a caregiver has. So I do a little snacking, listen to an audiobook, and catch a 5 minute snooze to keep going and call that self-care, Donna style.
My daughter approached me during our vacation and asked if I would be interested in speeding the day with her “escaping” from our caregiving responsibilities and just doing what we wanted to do. She knew I usually worked on the weekends but thought that I should take a break and do something just for myself. She also confessed that she, too, needed that break from caring for her special needs child as well. Falling into the category of “great minds thinking alike,” I told her I had been thinking the same thing. We both needed a “me” day so, of course, I said, “absolutely!”
Well, yesterday, she made it happen. Her husband who works almost every weekend was off. She checked with my step-son, and though he is often busy also with work activities on weekends, he said he, too, could be off. So her husband got baby duty, and my step-son got daddy-duty and my daughter and I got no duty,well mostly. As a caregiver you never completely get a day off unless you go out-of-town, alone. We both had our morning activities to complete with our loved one before we could go but we got away from our homes by 11 which was remarkable. Usually when Lynn and I have somewhere to go, our morning process is anything but smooth but not so yesterday. All was smooth sailing and in fact, I finished up so early, I was even able to do some outside decorating changing my artificial flower display (I do NOT have a green thumb or time to water plants so it’s either fake or nothing) from spring/summer to fall colors.
On my way to her house to pick her up, I stopped and got some more flowers for outside and then strolled into her house to say, “hi,” to my grandson who was absolutely adorable even with nasal congestion from his cold. “Loving” him from a distance, I made contact with smiles and gestures (can’t get close enough to pick up his germs to take home to Lynn) and then I escaped with his Mom for a day of freedom.
We went out to lunch and had dessert, then we decided to go shopping since neither of us ever can just “shop” for ourselves. It was awesome! During our meal, neither of us had to stop to feed anyone else first while our food got cold or clean up spills or do anything other than concentrate on our food. With shopping, we split up knowing that we didn’t need to “be together” to “be together” and each had the freedom to browse or buy as they saw fit. With the use of cell phones we kept up with where each was in the store and we mutually did our own thing. It was relaxing and carefree. We enjoyed good conversation and both bought some things we wanted and needed and actually had time to try on before we bought it.
We lost track of time somewhat and suddenly realized it was getting to be the time we had said we would be back but in reality that wasn’t bad either because we had an estimated time for return rather than a deadline.
I really needed this day. I know I had forgotten how it felt to be able to just take a day off from responsibilities. Sometimes I worry, as I know she does, about what we share with others about our feelings of isolation and being trapped at times. It’s not that we don’t want to be where we are or do what we do. We love the ones we care for and want to take care of them ourselves and don’t regret our decisions associated with making that commitment. But sometimes it just gets overwhelming to do the same thing day in and day out and not see an end in sight. I admit I get selfish a lot. I look only at what meeting his needs does to my agenda and don’t consider the fact that he wouldn’t ask if he could do it himself. I wish I had the patience and compassion I was able to display in the early days of caregiving before I started feeling burned out but I’m getting tired…physically tired, mentally tired, emotionally tired. However, having a day like yesterday helps me to cope with that fatigue and helps to recharge my battery.
Thanks to my stepson and son-in-law for sacrificing their day off to let us have that time. Bless you both for caring and loving us enough to see that we needed that time. Thanks to all my children, their spouses, my parents and in-laws, brothers, sisters, uncles and aunts, friends and readers who offer support, encouragement, and hands-on help. I don’t know how I would make it through the day in and day out challenges of our life without you. God has truly blessed me in this life with each of you.
T0day is my birthday. I’m a grand ole 56 years young or old depending on which joint is aching and how much sleep I have had. Usually, I do not pay much attention to birthdays. My children are grown and no one is in the house but me and Lynn and he has no way to buy me a card or gift or anything so it’s just another day. I get cards and emails and they are all fun and make me feel good but today….today was the best birthday I can ever remember having!!
First off, I went in to work. Usually I work from home which means I juggle taking care of Lynn and doing my job–often a difficult balance at best and can be very frustrating to split thoughts/functions/ activities continuously throughout the day. But today, I went into work so for most of the day, I only had one focus… my job. It was awesome. I love having only one thing to focus on even though I had multiple issues to address there, it was one role. My staff took me to lunch and I was treated to a wonderful fat cheese burger, with the works, and sweet potato fries. Delicious! I treated myself to a decadent mocha blended coffee; full of calories, and refreshing for my 15-minute walk from my office to my meeting. I was outside in the fresh air, able to enjoy peace and quiet; not rushing to get back in the house before I got called to help Lynn in some way or to finish up something that was on a deadline.
I got several text messages with birthday greetings and some beautiful cards. The cards this year were especially wonderful. Each one made me feel so humble. Several spoke to how special I was to the sender and how much they admired and appreciated me. It was so uplifting to have such sweet sentiment shared and to know they meant it. My brother and his family sent me flowers (which is no small thing since I live in the country). But there was one present I received that words cannot fully express the impact it had on me. It was truly the best, most awesome gift, I have ever received in my entire life.
It was a card. Not just any card but a card that was a colleague of pictures of my extended family. My wonderful, thoughtful 81-year old Mom, cut out pictures of each member of my extended family, glued them to a card and introduced me to the family I have not seen since Lynn became unable to travel.
I grew up with my Mom’s sisters and their children (my cousins) always around. We were all a very close family. We all got along together and really, truly enjoyed each other’s company. My Mom had three sisters and from those sisters I had 13 cousins. Each cousin has had children of their own, most of whom I have never met because I live five hours away and have not been able to go home for most of the family gatherings, even before Lynn was taken ill. For various reason, I could not get there on the days or times that they were able to gather. The last time I saw everyone was when my Grandmother died in 2000, thirteen years ago. Since then Lynn’s condition has made it impossible for me to take him with me back to my family home because their house is not designed for access and Lynn doesn’t tolerate travel very well anyway. The only travel we do now is once a year to vacation area with our children in a condo that is handicap accessible.
In my heart, I’ve known I would never see my “family” again. I hear stories and see pictures but it’s groups co-mingled together and difficult for me to tell who’s who. Well, no more! My Mom (what an angel) assembled a separate page for each family group. Started at the top of the page with her sister and brother-in-law and then introduced each of their children (my cousins) with their children (my second cousins) in groups and sometimes their grandchildren as well. I have just met each one and KNOW them. I see the family resemblance and it brings back so much love and longing for them. I can’t stop crying tears of joy.
As a caregiver, you have to give up a lot. It comes with the job that you have to make sacrifices that just can’t be helped in order to take care of the needs of your loved one. I’ve accepted that and just don’t dwell on it. It makes me sad that I can’t go to family reunions and I often fear the day when one of my precious relatives dies and I want to go pay my last respects, to be with our family in our grief, but know that I cannot do so because I have no way to meet Lynn’s needs nor anyone to stay there with him while I am gone. I hope that if and when the times comes, I’ll be able to find a way but …who knows? It’s just a sadness I carry in my heart over the loss of that family I loved so much. I’m not referring to my bothers and their families because they are wonderful about coming here so we can get together at least at Christmas but I’m referring to those childhood playmates that meant so much to me.
I didn’t realize how much I missed them until I got that card. At first I was grinning so much my face hurt. Then I took it to show Lynn what a special present I had received and the tears started to flow… and then the sobbing… and all the longing for my family I’ve storied in my heart for years just came out. I am still tearing up as I write this. I miss them so much and I still love each and every one of them the same as the day I last saw them.
So, I learned today there is more than one way to visit and unexpected joys can come that touch your heart in ways you never expected. I have been so blessed today by so many people and am so humbled by the love that has been shared and given freely. I am so, so blessed.
Happy birthday to me…
When my role as a caregiver became more demanding, I found myself acting more as a caregiver and less as a wife. In the early stages of MS, Lynn still worked, drove himself around, completed projects, and helped me with things I needed. He shared in the responsibilities of the house and we shared our lives as a couple. While he needed some assistance, particularly at night when he was most tired, he was independent in his own care and was still functioning as a husband, making decisions about our future, making sure maintenance of our home and vehicles occurred, taking measures to ensure our safety and securing our resources.
Then came the day he was home alone, fell, and could not get up. He was stranded for almost three hours lying next to a heat register, getting overheated, alone and totally helpless. It changed him. After that, he was afraid to be alone. He didn’t want me to leave the house and was even reluctant to let me leave if someone else was with him. He began to rely on me for everything. He was afraid to try walking with his walker anymore unless I was right there. He became very depressed and struggled with the realization that he was becoming or had become DISABLED. It was at that point that our roles changed. I became his caregiver and he became my “charge.”
Within a few months after he fell, his condition deteriorated to the point he was hospitalized and was in and out of the ICU during three separate hospitalizations. By that point, I was responsible for everything–all decisions; his protector; his liaison with the outside world; his life-extension. When we left the hospital after the first admission, we left with him as my patient and only an essence of my spouse.
That was 2 1/2 years ago. He’s much better now, physically and mentally, but the aftereffects of that time remain. He has use of only one arm and hand which becomes essentially no use of limbs by night fall. I position his body for him so that I can dress him; I manually move him from bed to wheelchair; I position his arms for comfort and his legs/feet go into his peddler so when his spasticity gets uncomfortable, the movement can relieve that. He does not have the strength of movement even when he does move his limbs for effective action. He cannot even scratch an itch or wipe his eye of sweat. That being the case, when the person you love cannot left their arms to hug you or tighten their muscles to embrace you; how do you maintain intimacy?
We are fortunate in that Lynn’s mind is still very active and engaged. Though we can have no physical relationship, we do have a spiritual and interpersonal relationship. We are still able to enjoy a television show or good movie together. We discuss the news. We share in the joy of parenthood and now grand-parenthood. We can still send each other special smiles and looks and we still strive to support and encourage one another. We still have companionship and for us, that has allowed us to continue as a couple.
I have talked to others whose spouse has withdrawn from being engaged with the events around them or who can no longer remember the here-and-now but instead lives in the yesterdays of their minds. For them, the person they loved no longer exists in the presence other than as a responsibility. They still love their spouse but the person who “was” no longer “is.” Therefore, they carry on in a one-sided relationship becoming the caregiver who functions not as a partner, but as the one responsible for everything that needs to be. That type of relationship can be very lonely. Though someone else is present in the same home there is no companionship; no sharing; no refuge from life’s challenges by being able to unburden their load with someone else. They now have to receive their satisfaction in the relationship though the knowledge that they are making their spouse’s life better, their life expectancy longer, their potential for greater recovery an option.
I am very thankful that I am not at that point yet. I dread the day that may or may not come when Lynn doesn’t recognize me or where we live. I know if that day occurs, the burden of caregiving will seem greater unless I prepare emotionally and mentally for what lies ahead. It’s possible Lynn will not develop memory or cognition problems but many MS patients eventually do. However, for now, I’ll feel blessed that he “has all his oars in the water,” and I send up prayers for my friends who are not as fortunate.
Happy Mother's Day (Photo credit: Wikipedia)
Having just celebrated a great Mother’s Day with my three children and their spouse’s, I couldn’t help but think that although my kids are all now grown, my mothering days are not over. I’m not referring to my status of “once a Mom, always a Mom,” which is certainly true but I’m talking about how being a caregiver is much the same as being a mother.
As a Mom, I did everything I could to keep my kids safe, happy, and well. As a caregiver, I do the same. Whenever I’m in the presence of my “child” (Lynn in this case) I watch for signs of danger. Is he about to run over something with his wheelchair that might topple him over? Has he allowed his food to sit out too long without being eaten so that I need to throw it out? I even automatically throw my arm out in front of him when I have to stop quickly! (He always asks me what I think that will do to protect him since he is bigger than I am but what can I say, it’s an automatic reflex.) I always reach out to protect him from whatever dangers I feel might be lurking around.
I also protect him from “bullies,” others causing him harm in whatever fashion, by overseeing his health care, going to bat for him in defending his rights, making sure all his “stuff” is secure and cared for. I am his “mamma bear” protector in the same way that I was to my children. When I feel a doctor or other healthcare worker is not paying attention to his needs or missing something that I think is important, I step in. If I think someone is trying to take advantage because of his condition, I’m ready to go to battle. I am his protector….Just like I did for my kids….
When I was raising my kids, I liked to always see them happy. I do the same for Lynn (and have the same challenges and defeats as I did for my children.) I try to make sure he has what he wants; that he has entertainment and fun in his life; that he feels comfortable and secure. I try to keep his fears at bay and lighten his load so that he doesn’t worry or become depressed. I try to keep him “happy.” Hum, okay, I admit, that’s not always true but it wasn’t always true for taking care of my kids either. There are days that I strike out with my sharp tongue that can be cut like a knife. I don’t always protect his feelings and I often fight back when I think I’m being taken advantage of but overall, I’m very sensitive to his emotional needs. I try to help pick up his spirits if sad. I comfort and encourage him when he’s down and discouraged. I bolster his ego and am his cheerleader. I’m the proud Mama clapping and shouting for joy when he gets good news about his book promotions or gets a good book review. I glow with pride when I hear him sing knowing that God gave him that voice to praise him (and praise him, he does). All these emotions I have for him and give to him; I had and gave to my children as their mother.
Another goal I have is that I strive to keep him well. Now as a caregiver, I seem to spend most, if not all of my time, in this category. What I feed him, how I care for his physical needs, where I step in to ensure he has a balanced life; all these actions are done with the goal of keeping him well. I make sure his food provides the best nutrient balance to fight MS. I assist with his physical therapy to keep his muscles, respirations, and circulatory system in the best shape possible. I see that his hygiene is kept up and watch for skin breakdown or discoloration that could indicate a problem. I try to make sure he rests when he shows signs of being tired and I attempt to keep his life a balance of stress and joy. All this is done for his well-being. All of this I did for my children and their well-being also.
So being a caregiver is essentially the same job description I had as a mother, EXCEPT as a Mom, I knew I was “growing up” my child to go out on their own. I was giving them the best start they could have in life and laying a foundation for them to enter their adult life with health, knowledge, abilities, and emotional strength so that they, in turn, could raise their own families and be successful in their own right.
Not so as a caregiver.
What I do each day as a caregiver is not to prepare my child for a future to go out on their own but instead to continue in this life at my side and under my care for as long as they live or as long as I am physically and mentally able to do so. He will not “leave the nest.” If he leaves its for a worse situation; not a better one (except personally, I have a strong belief that heaven is an awesome place and much better than earth could ever be; so in reality, it would be a better place for him; just not the dying part). For us, right now, there is not an end in sight, for which I am fortunate because as a caregiver to someone with an incurable condition, an end means THE END and is not a happy goal to achieve.
So as I reflect on Mother’s Day, I realize, I have my three children, my three children-in-law, my grandchild, and my spouse-child. I have a house of children and in my opinion there is no better (or harder) job in life than being a Mom.
Thank you, God for blessing me with my children.
The following Caregiver‘s Prayer appeared in a local church’s newsletter recently. Lynn’s aunt shared it with me and I contacted Kelly, the author, to see if I could share it with you. She graciously agreed. I have included her bio below as well as the introduction to the prayer and the prayer, itself. I hope it blesses you as it did me.
Kelly Combs wrote this poem for her father, who has been a dedicated caregiver to many, and is currently caring for his wife who has Alzheimer’s. Kelly writes a devotional blog at www.chattykelly.com.
The Caregiver’s Prayer
By: Kelly Combs
Being a caregiver is hard. Whether it is your aging parents, a sick spouse, or another chronically ill person, the weight can be overwhelming, even as it is done in love. We can’t do it alone, but when we partner with God, His strength can sustain us. I hope this prayer blesses those of you at Fairmount who may be caregiving, or know someone who is a caregiver. Please feel free to share it.
Dear God,
I’m feeling overwhelmed. I don’t know what to do. I’m tired Lord, the work is hard, and so I come to You.
My role here isn’t easy, but it’s one I wouldn’t trade. I know I’m following Your will, but my strength’s begun to fade.
You said Your yoke is easy, and that Your burden’s light. I need to rest my soul in You, and lean on You tonight.
I pray for peaceful, restful sleep; to wake fully restored. I hope that’s not too much to ask of You, my precious Lord.
I pray that You renew my strength because in You I hope; Then I will soar, and not be faint, and You will help me cope.
You modeled loving-kindness, teaching us to be like You. That gives me the strength to care. I know it’s what You’d do.
So I will keep care giving, on the bad days, and the good. I’ll love the way You love me, treating others as I should.
Please bless the one for whom I care and hold us in Your hands. Together, with You, we will make a strong cord of 3 strands.
And when I get to heaven, and stand before Your Son, He’ll call me faithful servant and say to me, “Well done.”
– Amen
I’ve had the opportunity this week to read a few blogs from other caregivers and last week to attend a caregiver support group. In hearing the stories of other caregivers, I started thinking about what it meant to be a caregiver. There’s certainly the obvious answer, “to give care to someone periodically or full-time,” but there is more to the story; especially if you’re a full-time caregiver to someone who is totally dependent on you due to a mental or physical condition. Here’s my take on it….
…first, there’s the physical commitment which takes on many faces…
If the person cannot “do for himself” then you become his muscles and nerves; not just his hands and feet. It is through your muscles, and therefore, your strength, that he moves to change positions, to find comfort, to alleviate pain, to participate in distractions, to have his needs of daily living met, to experience the joys and challenges of life as a participant and not as a spectator. It is through your nerve endings that his body is protected from water that is too hot, sharp objects that might damage skin, body temperatures that indicate infection, bandages that are too tight, food that is too cold to be enjoyable, and other potential discomforts or enjoyments that he is beyond the ability to change but must rely upon someone to care enough to notice them and adjust as necessary for his comfort and enjoyment.
The flip side of using those muscles and nerves to provide for care is that you have more aches and pains than you might otherwise have. Your muscles are often strained and in spasm from lifting a body that cannot provide any support for itself. It’s true what they say about dead weight being heavier. A limb that cannot be lifted by the owner is heavier to lift than one that the owner can provide assistance. Sure it weighs the same but the effort required makes it heavier. So you get up in the morning with sore muscles and periodic spasms. A good exercise routine would probably help that but finding the time to commit to that is a challenge (especially if you’re like me and hate to exercise!)
Besides the daily physical requirement, there is also the fact that you commit to their care even when you need care yourself! Gone are the days that you could lie in bed and rest if you had a cold or migraine. Gone are the days that you can have a GI bug and just stay in the bathroom till you are well. You have to figure out how to get help for the person you’re caring for either in-between bouts of being ill or who to call to come rescue you both. Personally, I’m probably going to have surgery soon and will have to find full-time care for Lynn before I do so. That’s bothers me more than the thought of the surgery!
….Then there’s the emotional commitment or impact….Though the physical aspect is draining, the emotional impact may be even more difficult to handle.
Again, there’s the emotional contributions of caregiving toward the “caree.” Part of your role includes observing the emotional thermostat of the individual. Are they depressed? Are they becoming angry and difficult to control? Maybe they are afraid about the future or that you will decide not to look after them anymore so they cling to you or try to “guilt” you into staying. Someone who is chronically ill often goes through the emotional stages similar to someone dying, “denial, bargaining, anger, depression, acceptance” with a lot of going back and forth between the stages as they encounter new issues. Guess who has to help them through those stages? The caregiver of course,who is also likely to be going through the same stages themselves.
The caregiver’s emotional response is often very difficult due to self-imposed guilt over having some of the emotions we have. Too often we think that we are “bad” to be angry or resentful about being “stuck” in a situation. We don’t want to give ourselves permission to experience the negative feelings we have. What happens though if you don’t allow yourself to express them is that they come out anyway in response to the one being cared for or in destructive ways to yourself. I tend to overeat if I’m depressed and I become overly negative and critical toward Lynn. It’s important to acknowledge the feelings and allow them to be expressed but in a healthy way rather than in a destructive way. Support groups and therapy help a lot with that as well as writing a blog : )
You also experience the effect of constantly having that person on your mind. You have to plan ahead for meeting their needs…do they have enough supplies, when is their medication refill due, are their bills being paid on time, are their clothes okay, are their meals being prepared correctly, who is going to cover for you when you can’t come by, who will take over if something happens to you….etc. etc. etc.
…Besides emotional and physical commitments, you also become the other person’s “window to the world.”
You help them remember what day it is and to celebrate the special occasions on the calendar. Often every day is just like the last so it’s difficult for them to keep straight the season or the holiday being experienced.
They may not read the news or watch it on TV so helping them keep up with current events may be a way to keep them connected (personally, I do not read them either so we could have had an alien invasion and I wouldn’t know about it till someone stopped by and told me about it.)
You are the one who takes them out into the real world. I admire Patrick, who writes Caregivingly Yours. He takes his wife Patti, who has MS and is fully dependent, on multiple excursions per week. He keeps her stimulated with new places and entertains her with new advantages to help her keep involved in life, even though her MS Dementia would make it easy for him to say they did when they didn’t. That’s try commitment to doing what’s good for someone when it would be so easy to let it go.
Then in addition to being a “caregiver” you add MS to the picture. I know all chronic illnesses have their special challenges but since I deal with MS, I’ll describe that impact. MS is unpredictable. Since any nerve pathway could be affected by the myelin degeneration, ANYTHING could go wrong. What is working fine today might not work at all tomorrow. Someone who is functioning well in the morning may not have the ability to do anything for themselves by afternoon. A simple cold can put them in bed for a month or more and lead to new exacerbations that have long-term limitations. A period of forgetfulness might mean fatigue or the beginnings of MS dementia. And while all these symptoms create challenges, for the most part they do not shorten life expectancy so the accumulation of new challenges goes on and on and what’s lost is rarely regained.
There is no doubt that being a caregiver is a sacrifice of one’s self. For me, I often feel like I am an extension of Lynn and at times, even lose myself in him so that I no longer exist. When that starts to happen I have to work to separate myself from that place; otherwise, depression sets in and I am less effective at anything.
Overall, I feel blessed to be a caregiver. I receive a lot of rewards from being one. It’s the hardest job I’ve ever had to do but it’s also the most rewarding because I’m very fortunate that the person I care for, cares for me, and we share the challenges together. Plus, he’s very grateful and I have much support from our families and friends.
But most of call, I’m blessed because God gave me the spirit of being a caregiver so I am doing what he has given me the talent to do. Not everyone is so lucky and for them being a caregiver is a much greater challenge. To them I say, “do the best you can but don’t expect to be perfect and don’t beat yourself up if you don’t like it. You’re a blessing to the one you care for and that’s enough.”
So am I.
My first career in life was as a registered nurse. I graduated in 1978 with a diploma in nursing and obtained my BS in 1980. I was fortunate to have a position that allowed me to learn lots of new procedures that I would teach to others so I had exposure to all types of products, procedures, and knowledge. Though I left nursing after my first child was born to begin a new career, I kept abreast with many of the changes. I even did home health care for a while as a second job. I fully believe that God used those experiences to prepare me for my current role as a family caregiver.
We have had a home health nurse overseeing Lynn’s wound care for several weeks now. I was telling her last week, that we really did not need her anymore because the pressure ulcer is nearly healed. All I had needed her for anyway was a consultation to make sure I had the supplies I needed to care for the wound. I could not get them as a family member but I could if I asked a home health nurse to get an order for them.
It’s been a bit frustrating at times being a nurse but unable to “be” a nurse as a family member. When Lynn was in the hospital I assisted with all his care except managing machines. I was unfamiliar with those so I either left them alone or had someone teach me how to manage those too (not something they would usually do). I would do my own assessments of his body and vital signs and consult with the medical team regarding what they observed. I still do that.
When I call in to the doctor, I have already taken vital signs, I give sizes and descriptions of skin breakdown, I describe sounds or smells that indicate problems, I have “home” kits that I use to determine if infections are developing. I do all these things and his doctor’s trust that I know when something is wrong and they listen to my recommendations. I am truly part of his care team. However, because I am the spouse, I cannot “order” supplies except through home health. I cannot get reimbursed for care provided such as wound care because I’m the spouse. The home health nurses have not once done his wound care. I do it. I tell them what I’m using, what I think is going on, how it’s healing, what supplies I need, and they go along with what I say.
Not so with insurance companies.
If there is a family relationship, you lose all credibility with them. I get “stripped” of my license when I try to justify care needs. So I’ve learned to get what I need by getting an order for home health (which is a waste of money for the insurance company since I could easily do this without them paying for a home visit). Just another problem that exists in our health care reimbursement system.
…Just like not paying for preventive care….don’t get me started on that!
There’s another time when a nurse is not a nurse when she’s a family caregiver; that’s when she tries to tell her spouse what to do. I have so many times told Lynn he was developing a “condition” of some sort. I would warn him that he needed to go to the doctor to get such and such. However, he won’t go until the situation is so bad he’s in pain or can see for himself that it won’t heal alone. I get no credit for what I know. Yes, I’ve “told him so” a few times now and he even admits that he needs to listen to me but there’s something in his ego that just won’t let him take directions from me.
I also realize that as a family caregiver, I’ve become his enabler. I realize that he would probably have more “abilities” to care for himself if I was not here to do so much for him. When he’s tired, he just won’t “do” for himself. He calls me. If he was in a facility or had someone who was not family caring for him, he would likely have to do it himself or not get it done. He would not be happy and he might have long waits, but I often wonder if I’ve done him harm by always being there to help. On the other hand, I know that if I had not been there to watch over him, he most likely would have not lived to this point because I have caught and/or prevented so many medical issues for him before they became serious.
So, my medical background is a true blessing from God. He’s provided me with the knowledge, skills, and abilities to care for the husband He gave me. Though He has not led me to “be” a nurse, He has led me to “be” His healing hands for Lynn. For that I am very grateful and we are both truly blessed.
I have become a “glass half empty” type of person. I’m not sure exactly when that occurred but it’s definitely true. Whenever something comes up as a possibility, I think about the risks associated with it and start preparing myself to deal with those possible traumas and disappointments.
It drives Lynn crazy.
Lynn is very optimistic. He looks at the possibilities and he believes in potentials. He talks about walking again and building the house we started years ago. I respond with, “you have a lot of muscle groups to retrain. Don’t get disappointed if you are not able to walk by the time you want to be able to do so.” In my mind, I don’t see walking even as a possibility. In his mind, he feels that as long as he keeps a positive attitude and keeps trying, anything could happen. I want to be more like Lynn.
So with that in mind, I’ve decided to turn over my glass and let it be half full today.
Instead of dirty carpets that are covered with stains that can never be removed, I see the blessing of dirty carpets that can have anything spilled on them and it not matter at all. What’s one more stain?
Instead of worrying about cleaning up the clutter that has accumulated around the house, I see that I have immediate access to the things I need without having to climb step-ladders or go to the attic.
Instead of being sad that I never get to go shopping to pick out new clothes or browse whatever might be there, I realize that I’m not being exposed to the flu and other ailments so many others are getting from being in crowds and sharing door handles.
Instead of feeling sorry for myself because I can’t go into work and see people face-to-face so that I get a chance to get away, I’m thankful that I don’t have to put on make-up and do my hair and I can work at my desk in my scrubs and slippers while participating in conference calls with directors and VPs.
Instead of complaining about all the medical equipment we have stored in all our spare rooms, I’m thankful that he has access to so many things and is making progress toward moving back to the less dependent modes of movement.
Instead of complaining that he’s playing his music so loud I can’t hear myself speak when I’m at the other side of the house, I am thankful that with the music I can hear him sing when for so long he didn’t have the breath to say a full sentence.
I know that as a caregiver, I have to think about the “what ifs” and have contingency plans. I know I am responsible for his safety and for realistically planning for what lies ahead. But I’m thankful that Lynn isn’t like me. I’m thankful he doesn’t give up and he keeps hope alive.
I’m thankful that we are different; that he’s “half full” to my “half empty” and that when we blend together we are both “full.”
I am very fortunate that almost everyone in my husband’s family likes to cook because I don’t. I enjoy eating but I eat to live; I don’t live to eat…except maybe for desserts.
Early Thursday morning, my wonderful sister-in-law arrived at my house to start the Thanksgiving feast. She did the entire meal, start to finish, and it was absolutely delicious. I am so thankful that she will do this for us.
Lynn cannot access anyone else’s home in our family and therefore, it would be difficult, if not impossible, for us to go somewhere else other than maybe a restaurant. This year we also had the challenge that my father-in-law is now blind due to macular degeneration. Therefore, we have learned to be creative. At one end of the table we made a space for Lynn’s wheelchair and at the other end, we made sure everything was set in an “easy to locate” design. It worked. We have great food; everyone ate their fill, and I think we each had a plate for dinner as well.
Lynn and I have much to be thankful for. Though he cannot do much for himself, he still manages to stay productive with the help of family and friends who help him type his manuscripts. When they are not around, he slowly works on marketing his first book through the internet. This activity has kept him working toward a goal and maintained his creativity. Furthermore, he has not had an exacerbation in two years and he is gaining strength gradually with his diet plan and exercise.
I am still able to work from home and keep our income source which is essential in order to keep a roof over our heads and access to the things we both need to make life comfortable.
Our church family continues to take care of us in every way possible. They are awesome and remarkable in all that they do for us. We are so blessed to have them in our lives and to have a Lord and Savior who meets our needs everyday and blesses us in abundance.
We have family who love and care for us and who are devoted to lifting us up at all times. Lynn’s mother, sister, and son come every week to spend time with him which takes a burden off me. My daughter now comes over two or three times a week to type for him. My son helps as he can (though with his fiance’s mother, whom they live with, is terminally ill; therefore, most of his time now must be devoted to helping them–for which I am also grateful that he’s there to do so). My son-in-law takes great care of our daughter and helps us often around our house. Our new daughter-in-law takes good care of Lynn’s son and loves us all. And last but not least is the blessing our wonderful grandson who has spread joy throughout our lives in so many ways.
Our blessings are too many to list and more than we deserve but for each we are grateful. I hope your Thanksgiving was also blessed.
One of the many challenges I face each day is how to devote the time needed to meet the obligations of my employment and give Lynn the care and attention he needs. I’ve found that whenever he calls me back to his room for assistance during the day, if he’s tired (and what MS patient is not tired most of the time), he will say, “while you’re here, would you ….” Often that request is related to typing an email response for him or copying something off a web address. Therefore, I find that in addition to my own job, I often am assisting him with his. Recently, though that has gotten better.
My daughter has decided to be a stay-at-home mom. That’s great news and I’m pleased that she wants to do that. I think it’s the best possible world when Mom can stay home with the children. That being said, in this economy, it also frightens me that she and her husband will not be able to make ends meet. I pray for them often that they will find a way to be successful in what they have chosen. While it’s nice for them, I’ve also discovered it’s going to be nice for me.
Currently, Lynn’s son comes on Mondays and Fridays for a few hours to help him work out and he’s occasionally been helping him, as well, with typing. On Thursday’s Suzie comes for a few hours and helps him with his marketing and typing. Now Sarah will also be available a few hours a day on the days he does not have anyone else coming. That means that he will now have a secretary, so to speak, five days a week who can help him with his manuscripts, internet research, marketing, and email responses. Isn’t that great? It really takes a burden off me to have this available.
There are still some things though that I do for him that he doesn’t want others to do. For example, Harper Voyager is accepting unsolicited manuscripts during the first two weeks in October. What an opportunity for Lynn! As a new author it’s very difficult to get published because many publishing houses will not accept unsolicited manuscripts. They want them to come through an agent but an agent is difficult to get if you have not been published. That’s why you hear of more people being self-published these days. Lynn’s first novel, Rising Tide, was published by Tate Publishing and they were great but Harper Voyager specializes in fantasy/Sci-Fi/supernatural fiction which is his genre. If they selected his manuscript for publication, they would already have a built-in audience to market the book to. (all prayer support on that front would be appreciated)
When he learned of this opportunity, he immediately dusted off the manuscript for this second book. Though his second book had been written, it had been a while since he had looked at it. When this opportunity came up, he, of course, wanted to take advantage of it, so he began tweaking the manuscript. Though he writes the books, I edit them, so this adventure was a project for both of us. Last weekend I stayed up nightly till 3 a.m. editing the book (that’s why I had no blog last week). We submitted it on Tuesday and I must say, it’s a good book. He’s done an awesome job with it. Originally, I thought it was a little weak in some areas but now it’s action packed and flows well. I really hope they choose it as one of their selections because it really is good.
Though he’s the writer and the books he creates are his projects, I’m blessed to be able to be part of it. God opened a door for him when he became disabled to allow him a new career. It’s certainly not an easy career but it’s one that he can do from home when he has the energy to do it and now He has provided Lynn (and me) with the resources to help him participate in his career choice on a regular basis. It’s so important for someone with MS who is totally disabled to feel productive and useful and to have a job to get up for each day as well as goals to pursue. I think that without that drive to produce, the person is more likely to decline in his/her health and abilities. God gave us work because we need to feel productive and I am so glad that Lynn has found his new career and has a job to do.
So keep your fingers crossed that his manuscript for Eden’s Wake is selected for publication. We might not know for two-three months. We were told if no news by three months, it was not chosen so we could learn the status by default. If you like adventure fantasy, take a look at Rising Tide. It’s a very good read and even was selected as a finalist in the National Indie Excellence Book Award for 2012. Keep your fingers crossed for us!
Elijah
Shortly after we returned from vacation, my daughter started having a lot of right-sided pain just under her ribcage and nausea. After a week, instead of it getting better, it was getting worse. She called me to “consult” on what I thought it might be (nurse to nurse). I ruled out liver problems, thought it might be muscle irritation but knew she needed to get it checked out. I told her to bring me the baby (2 1/2 month old Elijah, Eli if short) and go get it checked out. Being that it was the weekend, she and her husband went to the emergency room. A quick work up ruled out anything serious but they suggested her gallbladder might be the issue and recommended a follow-up to her primary care doctor.
Her pain was not getting better and was at times worse so she got an appointment the following week. The doctor immediately scheduled a STAT CT scan. As she was coming into our house to pick up Eli, she was hanging up her phone, “Mom, I’m going to have to have surgery!”
Surgery…. Wow.
I immediately went into “mama” mode, getting what details she had and reassuring her that we would be here to help her out. Apparently she had multiple gallstones which were periodically blocking her bile duct. If one lodged there, it would be emergency surgery. Regardless, she needed surgery as soon as it could be arranged. He also told her she could not “jiggle, bounce, or do any other jerky movements and could not carry heavy items.” Eli is a fussy baby and we do a LOT of bouncing with him to calm him down. So, we came up with a way to reduce her risk of bouncing.
After I get Lynn through his morning routine, I run over to her house, about ten minutes away, pick up Eli, and bring him back to our house. During the day I rotate taking care of Lynn’s needs with Eli’s often while handling requests from work. The first week wasn’t so bad. My parents came up and totally took over the “Eli” job. They were awesome and loved every minute of it; however, when they went home to take care of a few things, they found their floors had been flooded by a cracked toilet fixture and there was mold and ruined carpeting to address. I felt awful. Had they not been here helping me, their things would not have been ruined. I also admit though I was very disappointed they could not return here because they had been wonderful with Eli and I really enjoyed their stay with us (they live five hours away from me). But when life throws you a curve ball, you take a swing and see what happens.
Actually, though it’s like Grand Central Station here with everything I’m trying to do, it’s really rather enjoyable. Eli is a great diversion (in more ways than one). He’s now three months old and loves to smile. He recognizes me and my voice, as well, as Lynn and his voice. Though Lynn can’t do as much with him as he would like, we have developed a way of allowing him to help out with “sitter duty”. When Lynn is lying down, I put Eli under the arm that has limited movement and wrap it around him. Eli is then lying with his head and back against Lynn’s side. Lynn sings and talks to him and Eli coos and talks back. When Lynn is in his wheelchair, I have a “rocking chair” for the baby that allows me to strap him in and it has a play bar over it. Lynn keeps the rocker moving when the baby gets fussy and entertains him with songs and stories. I also often lift Eli so he’s eyeball to eyeball with Grand-dad for some heart-to-heart conversations.
Eli is like a drug for Lynn. Before I go and get the baby, Lynn might be feeling tired and out of sorts. Once I come back and Eli gives him a few of his famous grins and gurgles, Lynn just lights up! He laughs with him and forgets for the moment all his frustrations and hardships. He told me after the first day that we kept Eli that he was the best medicine he had every had. He calls me to bring the baby back to his room for a visit, often throughout the day and each time, their bond gets stronger.
My daughter’s surgery is now scheduled for September 7. She will not be allowed to lift Eli at all for three weeks afterwards so his Dad will drop him off here when he goes to work and pick him up when he comes home. Mom might come initially but I expect it will be easier for her to resist the temptation to pick him up if she stays home. It will certainly be hectic but I’m actually looking forward to it.
Having a baby around is healing. He brings joy and the promise of bright tomorrows. It’s wonderful to watch him discover the world though his hands and feet and see the amazement he experiences over things we take for granted. It’s really a blessing of healing having him here. … (Though if you want to send up a few prayers for my sanity and stamina for the next four weeks, I wouldn’t object!)
Elijah Gregory moments after his birth
May 27 at 3:51 p.m., my daughter gave birth to a beautiful son, Elijah Gregory–Eli for short. I was fortunate enough to share in the experience with her and her husband and at the moment of Eli’s birth, my daughter weep tears of joy, as did I.
The decision to have a child was not easy for her. Though she does not have MS, she has a chronic health condition that has dominated her life (and mine) since she was five years old. The condition has required multiple medication adjustments, much lost time from school and work, and interfered on more occasions than I can remember, with being able to enjoy plans made. It made her different from her peers, which created many difficulties for her as a teen. There have been many tears and many discussions about the quality of her life…but we made it through those times. Her condition is now controlled on medication that she must take every day for the rest of her life and it still is a factor in all her decisions but she has matured into a beautiful and kind young women, with a deep sense of responsibility, and wisdom beyond her young years. She is very fortunate in that she also has a very devoted husband who is unbelievably understanding and supportive of her. Now he has taken over my role as her “rock” and together they face their future.
I share all this as background for her decision to have Eli. She knew her pregnancy would be difficult and there was a risk that the medications she was on could cause birth defects (thankfully that does not seem to have happened) so she worked with her doctors to prepare her body, her mind, and her spirit to take on the challenge of having a child. For her that decision was the right one but for some people with chronic health conditions, the prospect of reproducing and sentencing a child to the same possible condition is not something they can do. Neither decision is wrong; both decisions are right…for those individuals.
As for my daughter, she has a strong faith in God and has learned to rely in Him to help her through the difficulties of this life. Though she certainly does not want to invite hardship, she also knows that her strength comes from the courage He has given her. Her life experiences, though very difficult, have prepared her to face what may be ahead since she probably won’t know if Eli has her same condition for several years yet. However, if he does develop it, who better to help him through it than his mother who can not only empathize but coach him in how to cope with it? That is true for any person thinking about having a child that might inherit a serious condition. There are some conditions, that I am sure would cause her (and me, too, if faced with the choice) to decide to adopt. In fact, she may decide to do that next time. But it’s okay either way.
My step-son knows that he may very well develop MS as he gets older. His father and grandfather both had it so his changes are significant. When he asked his girlfriend to marry him, she and I talked about their having children. They are fully aware of the risk of inheritance and that he may end up as his father but we also know that new medications and treatments are always in development. BECAUSE of his father, he’s prepared. He knows what things seem to reduce the risk and what to stay away from; he knows the symptoms and when to seek evaluation; he will know what to do if the time comes that he has to face the prospect. Plus, like with my daughter, he will know that his father and I are here to help out anyway was can and that God will bless them whatever the decision regarding children may be.
I belive that each challenge we face in our lives prepares us for what lies ahead. We gain strength, knowledge, and courage with each obstacle we overcome. Life is hard…no doubt about it. I truly wish and have prayed often that these burdens be removed from Lynn and from my daughter and that He would protect our other children from them as well. However, I know that we are not alone. I know that this time on earth for us is like a speck of dust compared to eternity in heaven. I know that although we have trials and difficulties and get depressed and hurt that I love this life we have. I feel so blessed to be married to Lynn and to have two wonderful children of my own and an awesome stepson. I love the partners my children have chosen to share their lives with. I can’t wait to spend time with my grandson and to share with him all we have learned that might be helpful to him on his journey through life.
I am very thankful my parents decided to give me life. I am very thankful that God blessed my decision to have children. And now I’m thankful that God has given my daughter the courage to face the unknown and to share her love and commitment to Christ and to her family with a child.
Yes, for me and my family, having children is truly a blessing for which we are thankful.
When I was trying to decide what to write about this week, I was having a hard time coming up with something unique. I’ve touched on many of the hardships and challenges associated with being a caregiver but as I look out the window at all the new growth for spring, I am also thinking of all the benefits.
Some of the challenges we ensure also have benefits associated with them. I realized early in my life of caregiving, actually when I was acting as both a Mom and caregiver for my child who had a chronic health condition too, that God prepares us for the challenges ahead without our realizing it. It seems in looking back that each difficult road I’ve traveled helped prepare me for something ahead that would have been more difficult if not for the previous experience. For myself, I find that God led me in a very unique way to prepare for where I need to be now.
I originally trained to be a nurse. My first nursing position was evening shift and I worked “the house” training other nurses in new procedures and helping out in all crisis events. I learned a lot of skills, both nursing and interpersonal. When my first child was born, my husband at that time wasn’t coping very well with being the one responsible for her care while I worked so I sought a day shift position. I became trained in Infection Control, Employee Health, and eventually was the Director of Education and Training. From there, I was asked to train in Human Resources so I could take over that department (this was obviously a small hospital). I eventually stayed in the area of Human Resources but moved to another hospital and focused on Employee Relations and development of policies. My role was primarily advisory in nature (over the phone or email consultations) and I learned the role technology could play in communication.
As you can see, my nursing and HR training, as well as experience in use of technology put me in a position to be able to work from home so that I could provide care for my husband. I can now consult with contacts by phone or email while I’m simultaneously assisting Lynn. My job with my company is no longer 8:30 a.m. – 6:00 p.m. but is now 24/7 (24 hours/day seven days a week). By working from home I access my emails and continue to work on projects between the times Lynn needs my assistance. I’m a 24/7 employee and a 24/7 caregiver. When you speak of multitasking…I’m the Queen!
I can be directing the action plan for a crisis while I am cooking spinach for Lynn’s diet and giving him his breakfast, all at the same time. In fact, I would say it’s pretty rare that I focus on one thing at a time. I expect that is true for all caregivers. Multitasking is a talent each of us has to develop in order to get everything done that we need to do. We each need more than 24-hours in a day but God in his wisdom realized that if he gave us any more, we would never get any rest! I know if I had more time, I would just fill it up with more tasks.
Though multitasking is a requirement for being a caregiver, it’s also a blessing we have been provided. It allows us to manage our lives and the lives of those to whom we provide care. It makes us better employees and more talented workers. We develop greater skill and stronger personalities. The only down side is we tend to try to do too much at any one time and we forget to take time for ourselves.
I guess every challenge has a benefit if we seek it. Sometimes we just have to look a little deeper to find it.
I’m going to be a grandma for the first time in June! My daughter is having a little boy and I’ve been more than a little excited since the first moment I heard the news (which was about two days after she knew she was pregnant). She and her husband are going to make great parents and I’m fortunate that they are not that far away so I’ll be able to see them fairly often (I hope).
I’ve thought a lot about this new baby entering into our family. I day-dream about babysitting and playing with him. I want to go to their home for his birthday parties, attend his school functions…all the things grandparents love to do. Then there’s this part of me that thinks about the reality of my ability to do that. I expect I can babysit here just fine but Lynn can’t get into their house so I couldn’t go to his birthday parties unless they were somewhere accessible or Lynn didn’t go. I also wonder as I look ahead, when the little guy actually starts school, what shape will Lynn be in by then. That’s five years away. Thinking back five years ago, Lynn was still working and totally independent. What if the next five years has the same decline of the past five? ….I can’t even go there.
So instead, I’m going to think positively. I know that there will be grandma time. I also know that Lynn wants some grandpa time so we’re thinking about getting him one of those things you strap on to hold the baby so he can safely cuddle him, too. Oh, probably he could not tolerate much time actually holding or playing with the baby but we’ll find a way for him to participate. I already have visions of the two of them racing down the hallway in Lynn’s powerchair!
That’s not our only life change coming up. Lynn’s son is getting married in November! Our kids are all great at finding ways to include Lynn so he can fully be a part of their lives. For instance, Lynn had secretly hoped that his son would ask him to be his best man but he was not going to say anything about it to him because he didn’t want to put any pressure on him. It’s their wedding and we want them to celebrate as they see fit. But he didn’t need to worry, he’s going to be the best man. We’ve been laughing about me getting him dressed in a tux and this should be something to see. Maybe a youtube moment that would go viral?
The wedding is at 2 pm, early enough that hopefully Lynn won’t have gotten worn out by then and late enough for me to make sure he’s had all his essential daily activities completed in plenty of time. The other factor is the rehearsal dinner…you know the groom’s family does that. My concern, though not shared with them, was that between the rehearsal and the dinner, Lynn would become so worn out that he would be barely able to function the next day. Well, they solved that problem for us. We’re having a rehearsal luncheon instead. Everyone will come to our house, I’ll fix something we can serve buffet style and that can be fixed in advance and when he gets tired, he can rest. I’m hoping he can do the lunch thing, ly down for a while and then go to rehearsal, come home and rest for the remainder of the night and be refreshed for the wedding.
So we have major life changes happening in our family. I’m excited about them all but as is true for anything, it has it challenges. When a family member has MS, special consideration and long-range planning is needed. You hear the news, get excited, and then at almost the same time, start thinking about what changes will be needed so that the MS won’t get in the way. The important thing is to make sure it doesn’t stop you or anyone else in the family from participating and enjoying the new events. It would be easier in some ways to just “sit this one out” but we intend to keep our lives as normal as possible and to participate in whatever we can whenever we can… and so far it’s working. I hope the same is working for you and yours.
Seems like I’m always complaining so I want to take a minute to say what a good day we had on Sunday. The weather was nice and Lynn was feeling pretty good for the third day in a row (that in itself made it a good day).
A former co-worker of Lynn’s was coming over at noon to finish up some of the detail work on the device Lynn is having built that will allow his legs to move while he is resting. (Lynn is really blessed that many of the guys he used to work with keep in touch and any one of them will help us out at the first hint that Lynn needs something. He worked with a great group of guys.) The project this day was to cut out any unnecessary wood around the device so that it would be lighter for me to lift. Not only is this gentleman a talented carpenter but he is also a great friend and Lynn really enjoyed the “virtual” carpenter experience through working with him.
While the two of them were working on the leg motion device, his wife kept me company while I took down Christmas decorations. My son had already put many of them away in the attic on Friday from where I took the outdoor items down last week. Since then I had been steadily working on taking down the rest. Not long after getting started on Sunday, my brother and his wife called to say they were bringing me a Christmas tree they had bought for me for next year that already had lights on it so it would be easier for me to decorate. Wasn’t that thoughtful of them? When they arrived, they stayed and helped me finish un-decorating and putting things back in the attic plus they shared a video they took the day before of a surprise presentation of a TV to our parents for their anniversary.
Sidebar: I can no longer travel to my parents house due to caring for Lynn. It’s just too difficult to go somewhere that is not handicap assessable and he’s just not up to long trips anyway, but I managed to be a part of the surprise anyway. While my brothers sneaked to the house with their families and the TV, I kept my parents occupied on the phone so they would not expect anything. It worked like a charm and was fun for us all. My family is so thoughtful to find ways to include us with our limitations. Just another way we are blessed.
Later after everyone had left, I had to work (office work) for a few hours. Then my daughter and her husband brought over some medications for Lynn they had picked up for us saving us a trip into town. We had a nice visit, though short. Afterwards, I gave Lynn a shower, we had dinner, and got to bed around 1:30 a.m. as usual. I was exhausted but I felt a real sense of accomplishment. I’m someone who needs closure so taking down decorations and getting them all put away provided me with a lot of peace. Walking around I was filled with awe at how open and tidy it all looked (at least for a few minutes anyway).
Though receiving the Christmas tree as a gift was nice, the present of help from my bother and sister-in-law and Lynn’s coworker not to mention my daughter and son-in-laws help too, is a gift more precious than words can say. We are so truly blessed by so many people who care. I just don’t know what we would do without them.
So Sunday was a good day…a very good day. Just wanted to share the good along with the trials. I hope you have your good days too. They help to make the more difficult ones easier to handle.
When I run into coworkers, friends, family, people from church, etc., I can see in their eyes that they feel sorry for me. Many say, “I don’t know how you do it, day in and day out. I don’t think I could.”
I don’t feel comfortable when someone tells me that. I don’t feel like I need anyone’s pity or that we are a tragic couple. I know that our lives are really quite good. We get along very well. We have wonderful family members both close by and far away who constantly support us and give us encouragement. We have a church family that really walks the talk that Jesus proclaimed while he walked the earth. I work for a compassionate supervisor in a job that is challenging and rewarding. I have the best employees working for me that anyone could ever ask for. I love where I work and what I do. We have enough–enough money to pay our bills, more than enough stuff as evidenced by the fact I can’t find enough places to put it all, and more than enough food as is obvious by our waistlines. We have good lives.
Yes, our lives are hard at times. Lynn rarely feels good. He is often uncomfortable. He is needy at times, stubborn at others, often funny, and sometimes angry. I almost never get to “sleep in,” or sit down to read a book or watch TV. I never go out on my own to shop or visit or do anything that is not essential. I watch every penny we have and the money going out is often more than the money coming in but not always… so it evens out.
Lynn has a lot of physical challenges. He has basically no use of his legs or right arm and his left arm fatigues by the end of the day. Many of his bodily functions do not work well on their own and need some help along the way like urinary catheterization or a bowel routine. It takes a lot of strength and energy to move him around and by the end of the day. I’m often tired and sore but a good night’s rest and I’m fine to get back at it again the next day.
When people look at me with that sadness in their eyes and say they couldn’t do it, what they don’t understand is that we didn’t get where we are now overnight. It was a progression of decline. By stages his abilities got less and at each stage we learned to adapt. When it’s gradual you have time to adjust and seek ways to make it better and …. find a new normal. The people who wake up and suddenly can’t walk, or see, or hear; they are the ones who have it worse. MS can do that to you. One day you are fine and the next day you can’t see anymore. How scary is that? You don’t have time to adjust, you just ARE. Everyone is scared but trying to support the one who is now blind or deaf, or immobile. No one has time to really adjust…. Suddenly your lives change and you’re thrust into a new reality. Now that’s hard.
You know what else is hard? When you’re caring for someone whose memory is fading. Lynn occasionally has some cognition issues. It’s usually just when he’s very tired or feels really lousy, but when he has asked me the same question three times in 3o minutes, it gets annoying. I can’t imagine dealing with that over and over and over again and knowing that it’s going to be like that every day all day. With Lynn, I settle him in one place and he has to stay there because he’s immobile. I really feel for those whose loved one is mobile but not thinking clearly. I would be afraid all the time that they would leave the house or start a fire or turn against me because they didn’t know who I was. That’s got to be so much worse than dealing with someone who is physically challenged. ….. or maybe not.
What I do know is this–whatever is your challenge…whether physical, mental, spiritual, emotional, or whatever it is; it’s your challenge and that makes it difficult and becomes your struggle and whatever that struggle is, it’s hard for you. Yes, you can always find someone worse off than you are but in their shoes, they may look at you and think the same. Everyone’s pain is real. Everyone’s challenge is theirs and it’s just as difficult as the next person’s.
So who has it worse? We all do; each in our own way and each with our own struggles. That’s why we need each other and God to help us carry on from one morning to another to another to another….
Ps. Feel free if you every need to share to drop me a line if you don’t want to do a public comment. Sometimes it helps just to share.
Last year on this date, Lynn was in the intensive care unit of the Medical College of Virginia Hospitals (MCV).
By today’s date, he had been in the hospital since November 6 and would remain in the hospital another two weeks. During that time I stayed with him 24-hours a day. I slept in a reclining chair at his side and was up every few hours helping to make him comfortable. He does not remember much of that time and what he does remember is clouded by the hallucinations he was having so at times he cannot be sure what was real and what was not; but I remember every bit of it.
I remember having my step-son stay with him while I went to work to teach a class 1/2 day on Nov. 5 and coming back to find he had not eaten anything all day and had drunk very little. I remember being up with him most of that night and deciding at 4 a.m. that he needed to go to the hospital because he was feeling so bad, calling my son-in-law to help me get him into the car, and then driving the hour to the hospital. I remember the kindness of staff who brought me coffee and a snack during the day; the visit by my daughter to bring me lunch and then her return to find out what I would need from home when the decision was made to admit him. He had stopped eating or drinking due to a urinary track infection that he could not get rid of due to a mistake in reading the urine culture and the wrong antibiotic being prescribed.
He had become so debilitated that he just could not bring himself to eat so they put in a nasogastric tube to feed him thinking it might be an MS exacerbation. During a tube feeding, he coughed violently and coughed up the tube causing some of the feeding to go into his lung. As the week progressed, he began to sleep more and more. The day before he was to be discharged, he slept all day and could barely be awakened. His temperature would not register and his blood pressure was dropping. It was discovered that his temperature had dropped to 95 degrees rectally; just barely at the level to sustain life. He was sent to the ICU for the first time and put on a heating blanket for hours. Pneumonia was discovered and he started “third spacing;” (that means all his body fluids were seeping into the skin and out of his blood vessels.) He looked like the Phlysberry dough boy. They took 1000 cc off his lung and the diuretics took out about 3000 cc in fluid through his kidneys. He was very sick.
During this admission he was in the ICU three separate times before going home. I wasn’t entirely sure he would make it home, but he did. Thinking back to those days, I’m so thankful for all those people at the hospital who brought me food, stayed with him while I went to get a meal away from the room, found me a place to shower, brought me clean clothes and supplies, checked on me to see what I needed, took care of things for me at home, and prayed for us every day. I could not have made it through that time without them.
I am also thankful for the friendships I made with the nursing and medical staff; the excellent care he received, and the diligence of the health care professionals in determining what he needed to get better. I am very grateful to my church especially who came to my house and decorated it for me for Christmas so we would come home to Christmas at our home without the work involved. We were and are so blessed.
That was Lynn’s first admission last year, ever. He had two more during the year; each time he was in the ICU for part of the time. Once he almost went on a ventilator which they felt he might not come off again. We were so fortunate to have the best healthcare workers anywhere caring for him and pulling him through and many, many people praying for us.
This week is Thanksgiving and we have much to be thankful for. It has been a very challenging and rewarding year. It’s been full of fear, faith, hope, and joy and much more. I hope the coming year won’t be a repeat but I know that if it is, I’m not alone and for that I’m truly blessed.
Have a safe and healthy Thanksgiving.
Donna
Finally after two long weeks of going back and forth and back and forth with the loan agent, we got approved for the full van loan. As the person who sold us the van said, “I’ve bought houses in less time than it’s taking to get this loan approved!” If the seller and I had not continuously pushed things to move along and offered assistance, I might still be waiting on the van. I finally called a dealer and pleaded that they send the retail value for a conversion kit to the loan officer and it finally went through. Then they even agreed that the van value was more than what was being asked! Go figure.
I can’t say enough nice things about the seller though. What an angel. He was so incredibly patient and helpful throughout this entire process. I feel like I made a new friend. He was such a man of integrity and honor. It seems rare to find someone like that when you’re buying something as expensive as a car. We were truly blessed and once again, we see God’s hand in making our prayers come true.
We got the van Thursday night. I walked around being oriented to it by the seller in the dark with a flashlight. Would you believe I had never driven it in all this time? In fact, all I have done so far is move it around the yard. I have insurance on it but still need to go to DMV tomorrow to get the title and tags straight. I can’t wait till I can open the door and just have Lynn drive inside. How exciting that’s going to be!
When you can’t travel safely either due to your vehicle or due to being able to get in/out of your vehicle, your world becomes very small. Currently the only time Lynn leaves the house was to go to the doctor. I’m hoping now he will also be able to return to church. He won’t be able to use his power wheelchair there because the elevator to the sanctuary is too small for it but when he’s feeling well, I may be able to transfer him to a transport chair so he can once again attend. That would be awesome.
We were also blessed today with the delivery of the patient lift we ordered. It is so much easier to use the hoyer lift we had. The rep from Adaptive Solutions in Lynchburg brought it to our house today, assembled it and showed us how to use it. He was very nice and you could tell he really wanted to provide helpful solutions to his customers. He was full of information about resources and things to check out that might be helpful. The Maximove he brought us is so easy to manuever and I can even put the sling on Lynn while he’s in his wheelchair and remove it without any help. I don’t know why insurance companies can’t see that to have a safe way to move patients around is so much smarter!
We have had a very busy day today. First Lynn’s physical therapist was here. I ran to the grocery store while they were busy. Immediately after I got back, the Adaptive Solutions rep was here. Then the home health company came and picked up the other lift. Meanwhile a rep for the Hayek ventilator came by to see how that was going, Lynn’s son came to exercise him, and finally our chiropractor came to adjust us both! Whew, I’m tired just thinking of it all. I was going to go to DMV after the chiropractor left but Lynn was just too tired for me to leave him home alone long enough to go. I’ll go in the morning when he’s fresher. By the way, between all these visits and then immediately afterward till about 10 pm tonight, I worked my regular job. Busy life….
So…we close this week with many blessings and much thanksgiving over God meeting our needs and carrying us through the tough times. Once again we managed to adapt to life’s curve balls and hit a home run. We are truly a blessed couple…
