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Reflections on Caregiving

As mobility becomes difficult, ramps help caregivers to get family members in and out of the house.
New Year’s Day often brings a time of reflection, and for some, a time for establishing resolutions for change. My life tends not to be stable enough to attempt to create resolutions for change. However, I have been indulging in reflection quite a bit. I’ve been thinking back over how my role as a caregiver has changed over the years and the impact that it had on my marital relationship and my health. When Lynn and I first married, I knew his father had died of MS complications, but Lynn claimed to have no symptoms himself of the disease. We know now that he had several early signs of MS that he and his doctor failed to recognize. Continue reading at https://multiplesclerosis.net/caregiver/reflections/

Realities of Life

For the most part, our home life is fairly stable meaning we have the same things happening day in and day out. We have a routine – I get Lynn up for the morning and help him with his exercise, take him to the bathroom for his bowel regimen, put him back to bed and do a partial bath including skincare, and he takes a nap to recover from that activity. It takes about three hours to do all that. None of it is complex (except sometimes the skincare) but most of it is very physically demanding and Lynn can do nothing to help with it except cooperate with what I do to him. Once this morning routine is completed, the rest of the day is pretty basic attendant type care (assist with eating, getting things to drink, changing position, helping him write, etc.).

At night, the work increases again by preparing meals, etc., for the next day, bath time, nighttime rituals, etc. Including my own personal care and feeding, it takes about five hours to get it all done and get us to bed. Again, the work is not complex care; just physical and time-consuming. None of this is complicated but all of it is necessary to maintain quality of life that is not miserable every minute of every day till you die so it’s very important stuff. It is also stuff that if you cannot do on your own, is very, very expensive to have someone else do for you unless you are fortunate enough to have family or friends to help you out.


Continue reading at

 https://multiplesclerosis.net/caregiver/realities-of-life/

Something New to Deal With

Every time Lynn starts acting differently for several days in a row, I start to wonder if it means there’s some new problem we have to face. MS can affect so many different body parts and functions that I just never know if a new problem is MS or something else.


For instance, Lynn has been sleeping a lot. He talked to his dietitian who thought he needed more protein in his diet; so, we added two protein shakes a day. He loves them and he is putting on a little more weight (he lost a lot dieting and not tracking how much he was losing) which is probably a good thing, but he still sleeps much more than he used to sleep. Now, I know MS causes fatigue and I know that our sleeping habits are poor because he wakes so often to empty his bladder but is this just the natural order of MS; lots of fatigue leading to the need for more sleep? Should he sleep this much if he’s tired or does sleeping a lot cause him to feel tired? Could be either. Should I be concerned or just let it go as part of the normal course of MS?


Continue reading at https://multiplesclerosis.net/caregiver/something-new-to-deal-with/

Feeling Alone or Maybe Just Left Out

Depression is a common mood disorder in the elderly.

I always have guilt feelings when I write about any negative emotions I feel in being a caregiver but the fact is, I have them and I expect most other caregivers have them as well. It doesn’t mean we don’t love the person we care for but it means that providing care is not always a piece of cake. If you’re a parent, it’s similar to loving your kids but being angry at them for scratching the car and sometimes seriously thinking of selling them to the lowest bidder. You would NEVER actually do it and would miss them beyond words if they were not around but the fantasy…well, sometimes the fantasy helps to get past the moment.


Feeling lonely is like that. I’m actually rarely alone which is one of the reasons why I feel lonely. I am responsible for Lynn 24/7/365; just like a parent of a small child. Whereas children grow up and leave home, adults with disabilities do not unless they become too much for the caregiver to handle (and that’s not something any of us want to have happen). So, you would think to have Lynn with me all the time for companionship, I wouldn’t be lonely but I am at times.


Continue reading at

 https://multiplesclerosis.net/caregiver/caregiver-perspective-feeling-alone-or-maybe-just-left-out/

Lack of Sleep. The Root of All Evil?

There are a lot of responsibilities and consequences in being a caregiver that I don’t like; things I would prefer not to do or which are difficult to manage, but the biggest challenge I have is lack of sleep. I think that if I had time to sleep more, my life would be a lot different.


Typically, I get five hours of sleep a night. If I were to have an opportunity to sleep through the night without interference, I would probably naturally wake up after nine hours. Nine hours is more like the “sleeping in on Saturday morning” days I remember back before children and back before Lynn became disabled. When I was going into work in the days before Lynn became immobile, I usually got eight hours and certainly at least seven of sleep a night unless someone was sick or we had been up for some special occasion. I remember those days fondly. I felt good. I had energy. I felt rested and refreshed when I awoke each morning ready to take on the day.

I miss those days.

Continue reading at

 https://multiplesclerosis.net/caregiver/caregiver-perspective-lack-of-sleep-the-root-of-all-evil/

Confessions of a Stressed-Out Caregiver

Often when I meet someone who has just become a caregiver, they ask me how I do it; “How do you handle the daily stress of working and caregiving full time while still managing a home?” I always reply, “I try to take it one day at a time and just deal with what’s happening that day.” Pearls of wisdom, right? Well, I’m here to confess, I apparently don’t deal with stress very well so I’m not sure that I should be giving anyone any advice on this subject. I’ve been caring for Lynn full time since 2009 and I can tell you, it’s starting to take its toll. Here’s my confession.


I do not take things one day at a time. I try to but I’m not very good at it.


continue reading at

https://multiplesclerosis.net/caregiver/confessions-of-a-stressed-out-caregiver/

Blessings from Pain

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….

I am blessed that I have been in the hospital three separate times for three overnight stays because it has allowed my family and me now to have a trial run on what we would do if I was sick for longer than overnight.


continue reading at

https://multiplesclerosis.net/caregiver/blessings-from-pain/

I Just Keep Going and Going and Going

The Emergency Department relies on information and training to support development of healthcare professionals.

In the past month, I have been taken to the emergency room twice with severe abdominal pain and vomiting.  Each time they ruled out appendicitis (thank goodness) but obviously, something is wrong. At this point, they believe I have two locations in my intestines that are infected which is causing the pain so I’ve been put on two very strong antibiotics that may kill me before the ten-day treatment is up. Each day I struggle to keep going. Each day I battle nausea and the discomfort caused by the antibiotics. Each day I have to find a way to get everything done that Lynn requires because if I don’t, it won’t get done.


People tell me to call if I need help and I have and they have but they can’t be expected to stay here 24/7 while I recover. They have to work. They have home responsibilities. They have their own challenges and illnesses and life to endure. It’s not that I don’t have wonderful people to support me; I do. It’s just that there is so much that must be done to keep our routine going.
Continue reading at https://multiplesclerosis.net/caregiver/i-just-keep-going-and-going-and-going/

What Resources are Available if I’m Not Around Anymore?

The way you become a caregiver has a significant impact on how you adapt to being a caregiver.

About this time last week, I was experiencing discomfort in my abdomen. As the hours progressed, the pain got worse until eventually it was so intense that I was vomiting. Unable to sit up, I was lying on the floor moaning in pain with no access to help within reach. Fortunately, Lynn heard my moaning and used his emergency response button to call for help. The dispatcher was able to summons the rescue squad and contact my daughter to come to our house to stay with Lynn until his son could arrive to take over (she has a special needs child she had to get home to before her husband left for work).
As I lay on the floor in agony, what was going through my head? I need to find a break between vomiting to put a Foley catheter in Lynn or his bladder will become too distended. I waited for my next break after vomiting and while doubled over, collected catheter supplies and inserted it before I was unable to remain upright again. At that point, I was able to focus on me.
Continue reading at: https://multiplesclerosis.net/caregiver/what-resources-are-available-if-im-not-around-anymore/

Waiting for the Next Shoe to Drop

Caregivers often experience feelings of depression, being overwhelmed and loneliness.

I was talking to a fellow caregiver this week about an event that occurred to him and he made the comment, “Yeah, I’m just waiting for the next shoe to drop.” That comment really struck home. I confess; I’m like that most of the time. Lynn, my husband and the person I provide care to, accuses me of being pessimistic but honestly, if I don’t expect the worst, then I won’t be prepared if it occurs. It’s a matter of self-preservation from my perspective. I do admit though that I can take it too far.
Scenario:
Lynn has gotten a double dose of baclofen in his pump to reduce the number of spasms. Baclofen is a muscle relaxer. Not only does it relax muscles, it makes him sleepy. Therefore, he sleeps h-o-u-r-s at a time, wakes up to eat, and then goes to sleep again.
My, “what if,” talk in my head goes like this…
He sure is sleeping a lot. Shouldn’t he have adjusted to the dose by now? It’s been a month. Maybe it’s something more. Just because he has more baclofen on board doesn’t mean that’s what is causing his sleepiness. I think I should check to make sure he does not have a urinary tract infection that is not showing up yet. I wonder if his CO2 level is too high? With his sleep apnea, he might be retaining carbon dioxide which would make him sleepy. I’ll have to make sure he’s oriented when he wakes up. What if it’s something new?And on and on and on….
Continue reading at https://multiplesclerosis.net/caregiver/waiting-for-the-next-shoe-to-drop/

How Can I Help?

I get a lot of offers to help; some sincere and others just being polite. What I have found is that people want to help but they don’t know how and realistically, many have their own problems and challenges so they can’t help in a way that involves time or money.  While I really could use the help, I don’t want to put anyone out so I usually don’t ask BUT, if you ask me if you can do something for us, I may very well say, “yes.” Here are some ways you can help.


Inexpensive and limited time commitment:
continue reading at: https://multiplesclerosis.net/caregiver/caregiver-perspective-can-help/

Frustrations of Dealing with Limitations

Life at our house over the past month has been rather challenging.  My Mom was just diagnosed with ovarian cancer and lives about two-hundred miles away; so we have moved her and my Dad in with us while she goes through chemotherapy.  Lynn’s Mom has myasthenia gravis and suffers from extreme weakness all the time. She fell while home alone and got pretty banged up though fortunately no broken bones. His Step-Dad was diagnosed this week with lung cancer and has maybe six months to live…and it’s the holiday season.

As the primary caregiver for Lynn, not only do I deal with his physical health but his mental andemotional health as well.  All this bad news has been very difficult for him.  He is angry because he wants to help but is limited in what he can do.  For example, we had bought his Mom an emergency alarm button to wear but she was intimidated by how to set it up and therefore, it was not working when she fell. Lynn had tried to explain to her what she needed to do to start the service but she just shuts down when it comes to technical discussions. Therefore, he felt he needed to go to her house to make sure the system was functioning.  We climbed into the van and, of course, when we get there, his wheelchair couldn’t go inside. (I strongly suspected it couldn’t before we went.)  He was convinced that with the small metal ramps we have, he could get in. I could tell his need to make sure she was safe was over-riding his knowledge of logistics; so we went and I went inside to hook everything up while he waited in the van. His Mom couldn’t come out to see him so I became the liaison between them and made sure his need to see her safe was satisfied.

Now his Step-Dad is dying. His Step-Dad didn’t enter the picture until Lynn was an adult so it’s not the same impact as when his own Dad died with MS when Lynn was twenty but still, he’s known Ben for about thirty years and he is special to Lynn.  Tomorrow, we plan to load up and go to the hospital to see him to essentially say good-bye because we try to avoid hospitals as much as possible during cold and flu season to keep Lynn healthy, I’m nervous about going.  To visit face-to-face versus calling is a choice I allowed Lynn to make because, again, he needs the opportunity to satisfy his emotional needs as well as his physical.

Lynn has really become depressed with all the health challenges affecting our family.  He’s a tender hearted man and though he has great faith and knows each of them knows Jesus and will have a home in heaven, the grief he is feeling over their suffering and uncertain future is difficult for him because he has no control.  He’s trying to control his emotions and not add more to my load but I hear him getting angry and frustrated at minor things as he seeks to write on his book.  He’s sleeping a lot; he doesn’t feel well; he has no patience; and he’s making poor decisions regarding his own health (staying up till 6:00 a.m. while I take my Mom to the emergency room instead of going to bed and getting the rest he needs).  I’m trying to help him cope through humor and helping him find solutions that work for the both of us but I have to admit, my patience is at a limit, too.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-the-frustrations-of-dealing-with-limitations/

Am I Competent to Do This Job?

I earn a living by working in a hospital in the department of Human Resources.  Hospitals are heavily regulated and one of the most stringent agencies who monitor us is The Joint Commission. One of the standards they have for human resources is that it’s our responsibility to determine if the people we hire are competent enough to safely do their jobs. I won’t bore you with the details on how that’s done but in working on a project related to competency determination today, I thought about what competencies are required to be a family caregiver.  It’s not an easy job but for some reason insurance carriers and the government seems to believe that any family member should be able to be a caregiver.
Just before my father-in-law died last month, I was attempting to assist my mother-in-law in finding someone who could take care of him if he was discharged to hospice care.  We discovered that once a person is deemed not to be able to improve but instead just needs comfort care or maintenance care that Medicare and insurance companies no longer pay for help regardless of the health and well-being of the family member responsible for his care.  My mother-in-law is near 80 and has myasthenia gravis, a neurological condition that makes all her muscles very weak.  She cannot lift or move anything more than a few pounds in weight.  There was no way that she could provide care for her spouse; however, that factor was not considered by insurance and she was unable to get any type of financial assistance to bring someone in to care for him or to place him in a skilled care facility.  Why? Because insurance said he did not need skilled care; just palliative care.
I’ve found the same is true for someone who is totally disabled and cannot improve their health, like Lynn.  His MS has progressed to secondary progressive and he can do nothing physical for himself; not even scratch an itch. He is an author and writes manuscripts with the use of a verbal command program that writes what he dictates.  It’s slow going but it keeps him productive and fortunately, so far his memory has not been affected by the disease.  With Lynn needing total care and my needing to work full time to pay the bills, I looked for help that we could afford.  I now pay an individual to work six hours a day 2-3 days a week to assist him with typing, feed him, and make sure he has liquids to drink. I provide all the rest of his care.  Am I competent to truly care for him? What type of competencies do I need to keep him safe and healthy? If someone was to apply for my job, what would my job description as a care giver look like?
Caregiver Job Description
continue reading at: http://multiplesclerosis.net/living-with-ms/caregivers-perspective-competent-job/

Take Care of Myself?

While I know people are well meaning, when they remind me to “take care of yourself,” I honestly want to ask them, “Now, how do you suppose I do that?” People who have never been full timecaregivers while jointly being a full time employee and at the same time being responsible for the food, shelter, transportation, maintenance, solving problems, researching issues, managing medical care, providing entertainment, comfort, and encouragement….have no idea what they are talking about.
I was sharing this week with a colleague how overwhelmed I was over Christmas with my father-in-law dying, helping my mother-in-law find hospice and companion care for him, helping her maneuver through insurance changes, keeping a watchful eye over my Mom who has chemo every three weeks and was admitted to the hospital for fainting spells, doing Christmas activities (mainly as a respite from medical issues) and helping Lynn who was depressed over his step-dad’s impending death and who was bummed out because he could not help me with it all.  Now, don’t you think that list of “to do’s” is a little overwhelming?  Well, at the same time, one of my four employees who handled a unique function for my team resigned, I had to start recruiting for her position, a consultant was coming in to our department who needed information, and various other challenges were being thrown my way that were work related. That’s a lot of stuff to juggle in 24-hours. My usual amount of sleep was 4-5 hours a night; so I was running on empty and admittedly using caffeine pills just to keep going. …and she tells me to “take care of yourself.” …Really??  What is she expecting—for me to eat healthy, exercise regularly and get plenty of sleep?
I wonder what people think sometimes when I tell them about my life.  Do they think that I can just call up the local “help” agency and have a fully trained, caring individual come help me out so I can take a nap?  Do they think I can just say, “Lynn, see you in a few hours.  I’m off to the gym,” or that I can choose to go to bed earlier and sleep later because all that stuff I’m doing is not essential?  I guess, they think I can just say, “No.”  However, “no,” is not an option.  Have you seen that commercial where the Mom or Dad is feeling lousy with a cold and comes into the baby’s room to say, “I’m feeling sick. I won’t be in tomorrow.”? That commercial gets attention because any parent knows you can’t just tell your child you’re taking the next day off and leave them to their own devices.  Well, that’s true too for caregivers. The only difference is that when you’re a full time caregiver, there is never a “next day” when the illness has passed and life goes back to normal because our normal is high demand, adjusting to constant change, and often feeling exhausted and achy all the time due to lack of sleep and muscle strain.
Continue reading at: http://multiplesclerosis.net/living-with-ms/take-care-of-myself/

Planning for the Future with Our Children

Sometimes I forget the impact our life has on the rest of our family. Today, that impact is more evident as I wait for our three children and their spouses to come over to “talk about the future.”   I have been having just such a conversation with my brothers and parents but hadn’t really thought much about needing to have that conversation with my own children.  However, they have requested an opportunity to discuss the “what ifs” that can occur either as a result of my disability or my death.
As a result of secondary progressive MS, Lynn can no longer provide any self-care.  He relies on me for everything from feeding to assistance with going to the bathroom.  It’s a lot of work but we have a routine that works for us pretty well. However, what if I suddenly could not provide that care? What would happen to Lynn?  And what if the “what if” was not my death but my disability and not only would total care be needed for Lynn but also for me?  The obvious answer to that is that our children would have to figure out what to do with us.  Therefore, I understand and appreciate their desire to have this conversation with us today.
All three of our children are in their late twenties, early thirties. Two of them have just been married two years or less and the other one has been married longer but has a young child with special needs.  All are in those early years of learning to make it on their own and struggling to do so in today’s economy.  I also know that each of them would do anything for us.  They are very good about helping out and they want the very best for us, but realistically, if something happened to me so that I could no longer care for Lynn, there would certainly be an impact on them as well as me.
Financially
With any illness or injury there are mounting bills to pay.  If we were both dead and had outstanding debt that was not paid by life insurance, the bills would go to our heirs. That doesn’t seem fair but if I’m not mistaken, that’s how it is. Therefore, to protect my family, I have bought supplemental life insurance that should be enough between what my company provides and the additional I carry, to pay my last expenses and provide the ability to care for Lynn.  I can keep this insurance as long as I’m employed but I’m also 57 years old now so I may only have that option for another 10 years, if that long.  Hopefully, I’ll be able to afford to carry that as independent coverage afterwards though; so financially, I think they will be okay.
Providing Care
Money is one thing but who is going to be responsible for taking us in?  None of them have houses that would allow Lynn to move in along with all his equipment and supplies.  Therefore, they would either have to move into our house or move Lynn into an assistive living arrangement (or more likely a long term care facility).  I know that none of them want to do that but sometimes there is no choice in the matter.  I have some Long Term Care for me to help pay for a place for me to go but Lynn was in the process of being diagnosed with MS when that option became available with my company so he was turned down for coverage.  Would they be able to afford a long term care option or would someone have to quit their job to stay home to care for him? And, if that happened, could they afford for one of them not to work?
Continue reading at: http://multiplesclerosis.net/living-with-ms/planning-future-children/

Who Can Afford Respite Care?

Before I get started on this blog, I want to write a disclaimer:  I’m very tired and having difficulty this week coping so if you are a caregiver; read on—you probably have felt the same way.  If you are someone with MS, maybe you better skip this one.  It’s not meant to cause you guilt or pain but unfortunately, it’s how I’m feeling right now.

So what’s wrong with me today?  I’m tired.  My body aches.  And though it’s 8:30 at night when most people are starting to wind down, I still have many hours to go.  Nothing out of the ordinary going on today; it’s just a regular day, but that’s why I’m feeling down…Not depressed; just down.
Do you ever just feel like you want to run away?  I do.  I want so much to have a couple of days in a row where I only take care of myself.  I really feel like I need to get away but I also know that is not going to happen.  You may be thinking, if you’re a parent of a young child that you are also in the same situation, but unless you have a special needs child that is not likely to leave home, I’m going to challenge you on that view.  When your child is totally dependent on you, they are still small enough that you can lift them fairly easily.  Chances are they weigh less than 50 pounds. The person I’m caring for weighs 195 pounds, is six feet tall, and can’t move a muscle independently. While your child is taking up every spare minute of your day, you know they are going to gain independence, and as they grow and learn, they will become even more independent until eventually they will either leave home or if they stay at home, you can ignore them. You have the “empty nest” to look forward to.
I don’t.
Not trying to be morbid here but my responsibilities are only going to get more demanding; not less. As I grow older and have less strength and more discomfort, his needs will only be getting greater.  Our situation will not get better until one of us dies … and the fact is, I’m just as likely to be the one to go as he is since the life expectancy for a full time caregiver is less than the average population’s of the same age.  I sometimes feel that the only way I’m ever going to get any rest or really be able to rejuvenate is to become hospitalized myself.
I know I should not be complaining like this; I have people come over almost every day to help Lynn with his writing.  Most of them also feed him his breakfast, get him what he wants to drink and help him with small comforts.  However, in order to be able to use their services, I have to get up three hours before they arrive to get him ready for them.  Then once they leave, I have hours of work to do related to his care as well.  Each morning my alarm goes off and Lynn is telling me to get up; he needs to empty is bladder as soon as possible. So I can’t linger in bed and stretch or gradually to wake up anymore.  Then we spend a half hour to an hour in the bathroom where my tired, tight-feeling body lifts him onto and off of the toilet.  Finally, I lay him down to get him off his butt since he sits up to sleep. I want so much to not have to get up each morning; to not spend three hours lifting body parts that are heavy and dead weight; to not feel so exhausted I can hardly move.
But I can’t.
Continue reading at: http://multiplesclerosis.net/living-with-ms/can-afford-respite-care/

I'll Miss You, Patrick

It was with great sadness this week that I learned of Patrick Leer’s death.  He passed away at home in the presence of his daughter, Megan, after battling unsuccessfully lung cancer with metastasis to the brain. Throughout his journey, he remained a fighter, keeping a positive outlook and determined not to let the disease win, but win it did on November 11.
When I first decided to write my blog, it was actually with the expectation that no one would likely read it but family even though I hoped that maybe a few other caregivers of family members with MS might stumble across it and we could connect through sharing our experiences. Patrick was one of the first to make that connection with me.  He had been caring for his wife, Patti, for over twenty years after she woke up one Thanksgiving morning unable to walk.  Their’s was a sudden entry into the world of MS and his wife progressed in her condition until for her safety, she had to live in an assisted living facility.  She developed MS dementia and may not have been fully aware even of her husband’s condition and eventual passing.  I remember Patrick sharing with me early on that caregivers often die before the one they have cared for does.  I also remember when he first wrote about having cancer his commenting that he had become a statistic; a caregiver with a serious condition that might take him before his loved one.
Reading about Patrick’s struggles and the impact it had on his ability to care for Patti brought home to me once again my fear of the same.  I often worry that I’ll have a heart attack or stroke and not be able to care for Lynn any longer.  Cancer is not as prevalent in our family but heart disease is and I’m sure I’m high risk for it. I rarely get sufficient sleep; I eat to stay awake so I’m gaining weight again; and I get no exercise so even the slightest exertion now makes me short of breath.  All are high risk factors for heart disease.  I keep thinking that I need to get on my treadmill each day for 30 minutes or I need to cut back on eating so many snacks or I need more sleep but I’m honestly at a loss on how to do any of those things.
I keep thinking I’ll get to bed earlier but I seem to get there later all the time. I often am so sleepy by 4 pm, that I fall asleep at my desk.  Some days I actually lie in the floor for a few minutes to take a nap or even lay on the bed and take one for an hour.  Those precious extra minutes keep me going till I can really crawl into bed around 2 a.m. each night.   I try hard not to nap though by snacking on things that will give me bursts of energy but which also are high in calories.  They help me keep going but my clothes are sure getting tighter. Then there’s the issue of exercise. The only time I could change into clothes, be able to exercise for 30 minutes, and change back out again without being interrupted is around 1 a.m and that’s too late to do something that would just wake me up. These things just sound like excuses to not take care of myself but in reality, they are choices I’ve made to take care of Lynn and our needs instead of me.
My children are worried about what will happen if I can no longer care for Lynn.  I understand their concern because in reality none of them could quit work and care for him; much less two of us.  They would certainly want to do so but they have to work and don’t have extra money to hire a caregiver so care could be provided at home.  Therefore, all our possessions would need to be sold so that we could go into assisted living.  Lynn is convinced he would die if I died first because he would not want to go on.  A large part of that is because we’re close and he would grieve my loss but the other part is he knows in assisted living he would not get the level of care that I give him and he would likely die from complications due to that lack of attention before many years.
It’s really a shame that there is no assistance for caregivers that can come into the home and support them so that in the end two don’t need to be cared for instead of just one.  Just another short-sighted aspect of our medical care.
Nuff said on this depressing topic but in closing I do want to say that I truly admired Patrick.  He was a dedicated husband and father for many, many years when men with less integrity would have rode off into the sunset.  I’ll miss you Patrick …. but not nearly as much as Patti will even though she won’t know why.

So This is What a Day of Freedom Feels Like

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.

Call If You Need Anything

Ever had this conversation?
“How’s (insert family member’s name here)? You know, that if you ever need anything, anything at all, that all you have to do is call….”
Really?  In my experience most of the time that is a polite way of letting me know the person cares and at that time, they certainly mean they would be willing to help, but they hope secretly that you’ll never actually call. Getting unsolicited offers of help is rare and asking for help is just hard.
When Lynn first got sick, I always declined offers of help.  For one thing, I didn’t want anyone to think I couldn’t handle it.  He was “my” responsibility and I didn’t want anyone saying I wasn’t doing well by him. The other reason though was that Lynn had still not come to terms with his condition and he didn’t want anyone to see him so dependent on others.  In fact, when we had visitors he would stage an appearance.  His clothing had to be reminiscent of the clothes he wore before his disability.  He only ate what he could manage himself.  He would slip in and out of the gathering discretely so people would not notice him needing special attention.  He would also push himself to talk more and do more to the point of exhaustion most of the time.
As I became more exhausted from caregiving 24/7, I began to realize I had to have some help but I was still reluctant to ask for any. What a blessing it was to have someone come and offer to do something specific for us!  Offering to come to stay with Lynn so I could go shopping for supplies, to cut the grass, to prepare meals, to help me get my car repaired–all these are things I need help with, and the offer to do them for me would certainly be received favorably by me.
I realize most people don’t know what to offer and are concerned about offending me by offering to do housework or other similar things.  Trust me, I’m not offended!  Anything that I can cross off my list is something I don’t have to worry about getting accomplished and is appreciated.  So, if you’re wondering how you can help someone who is a caregiver, here’s what I would recommend.
1.  Offer to do something specific.  Think about what is a task that takes a long time or may require special skills.  For me, now that summer is here, I need yard work done. I can’t go outside and mow the grass because I cannot hear Lynn call for me and if the phone is on vibration, I can’t feel it if I’m riding the mower.  I need the grass cut, weed eating is done, grass in the driveway sprayed, repairs done to the rotten rails on my front porch, trash taken to the dump (I live in a rural area where we actually take the trash to the dump ourselves), or similar things.  I finally hired a maid service so I no longer need my house cleaned but shampooing the carpet, helping to pack up things to take to Good Will, you know all those weekend projects that take a lot of time, would be suggestions on how people could help.
2. Offer to stay with Lynn for an extended period of time.  It’s very difficult to find someone to stay with Lynn for long periods so I can run errands on the weekend.  Most people work and have busy weekend schedules themselves so setting aside an extended period to be a companion to someone is not a favorite pastime.  Also, some are intimidated by his condition.  Since he cannot do much for himself, they’re afraid he will need something they can’t handle or that they will hurt him in some way.  I remind people that he’s not fragile.  I always take care of his medical needs before I leave.  Really, all they need to do is help him with food, typing (if they know how), drinks, and other comfort items.  He really doesn’t need anything special; just someone to be his hands and feet for a while.
Once the offer is made and accepted for a specific job, there are some caregiver etiquette rules I would recommend you observe.
1.  Treat this as a job.  If you can’t come, call in advance; give a specific time and be there at that time; be prepared to stay as long as you said you would and build in a little flexibility with the time so the caregiver won’t have to stop in the middle of shopping to rush home before the sitter has to leave.
2.  Realize you are there to help out; so help.  I’ve occasionally seen people offer to come help but when they get here, they sit back and do nothing. They are just here in the body only; not connected to the needs of the patient. If you’re here to help, ask the caregiver what they need and then jump up to help promptly if the patient requests help rather than letting the caregiver still do the work.
3.  Don’t tell the caregiver, “You just have to take care of yourself better.  You need to start exercising and getting more sleep.”  When someone says that to me, I want to say, “Don’t you think I would do that if I could?  There are only so many minutes in the day and if things have to get done, there is no one else here to do them so ‘taking care of me’ will just have to wait.” They mean well but they just don’t get it.  Telling a caregiver to do something more, even if it’s good advice, just means more for us to do and it takes, too, much energy to even think about that.
I have been very fortunate because Lynn and my family are wonderful about helping us out; plus we have our church family who comes through for us all the time; however, so many caregivers are not as fortunate as me.  It’s hard to ask for help and it’s even harder to relinquish our loved one into the care of someone else but it’s a blessing when we can get some relief; some time away for ourselves or to do the things that need to be done but can’t be when you’re caring for someone.  Thank the Lord above for the angels He sends to help.  I know I couldn’t have made it without them.

Just Sharing

Usually I have a theme for my posts, but not so today.  Instead, I just want to share what’s going on in my life because life doesn’t stop for a caregiver; it just gets busier and busier.
Lynn:  He has started to feel better from taking his Rebif. Hallaluyah!  It only took a year.  Though he still has fatigue, it’s much better; except for this past week. For some reason when pollen comes out each spring, it really hits him hard.  He needs about 25 squirts of saline mixed with nose spray every time I enter his room and sometimes twice while I’m there.  He has felt very tired all week and rather depressed. The depression leads to impatience and irritability so my tolerance has been stretched as well.  He seemed better today so I hope he’s getting adjusted.
Eli 146My grandson, Eli:  Poor little guy has been labeled with “failure to thrive.”  He’s 10 months old and the size of a five month old.  He has not gained height or weight in several months. He will only drink 2-3 ounces of breast milk at a time and if he eats solid food, he breaks out in a rash.  The GI specialist says his tummy probably has the same type of rash inside as he skin outside and so it hurts him to eat. He’s on an formula that has been added to the breast milk and it smells bad and must taste bad because he pushes it away as soon as he tastes it.  We’re trying to get him to drink at least as much as before adding the supplement but he’s really fighting it. If this is not successful, he may need a feeding tube.  It’s very frustrating and anxiety producing for his caregivers but the little guy is just as happy and loving as he can be! His smile is infectious and he’s a joy to be around. 
His mom, my daughter:  She bent over a chair Monday and broke two ribs!  She also broke her ribs bathing Eli when he was about two months old so now we have the added concern of why are her bones breaking so easily?  Bones don’t usually break unless an unusal stress or intense pressure is applied. She just leaned over the chair.  So, she’s having all sorts of lab work done plus a full body bone scan and a bone density test to figure out what’s wrong.  Though they do not suspect cancer, bone tumors or bone infection can be the cause of such breaks.
While she goes to the doctor, I keep Eli and Lynn.  A typical hour from such a day:
     Lynn:  “Sweetie, I need to pee.” (I pick up the baby, settle him into something he can’t get out of, cath Lynn and deal with whatever else he needs.  Meanwhile, baby gets fussy.)
     Eli:”Mamamamamam, (squeal), dadadadad, (whine)” hands reaching up, whining getting worse; he’s rubbing his eyes and needs his bottle. (I settle Lynn, go heat up the bottle, with Eli crawling around my legs begging for his milk that he wants THIS MINUTE)
     I rock Eli to get him sleepy so he won’t fight eating.  As his eyes start to shut, I remove his pacifier and stick in the bottle. Success, he eats 2 ounces.  I try it again in a few minutes- another ounce-and that’s all he will take.  I finish rocking him to sleep (he’s a very light sleeper; if you move he wakes up and is ready to play) I start to fall asleep (I’ve only slept six hours so I’m always tired) and after about 20 minutes, I hear:
     Lynn:  “Sweetie, I need to pee”  and we start over.
      I never ends…
My son:  He’s getting married on Friday at our house and having the reception on Saturday at our house so Lynn can attend and have a place to rest. So my house is covered in flowers and wedding preparations and every spare minute I’m busy working on something related to the wedding.  I’m taking next week off from work to get it all done because I’m WAY behind. I don’t even have a dress yet!  But I’m very excited and happy for them both.  It’s been a lot of fun helping them put it all together.
Me:  I’m seeing a surgeon on Monday.  My right thumb joint needs to be replaced.  I can’t really put it off any longer.  It’s painful all the time, I can’t open anything with it, I can’t grasp anything so I need to get it done BUT, what am I going to do with Lynn? I’ll need some respite care of course but I won’t know till I see the surgeon how long I’ll be unable to use my hand.  Ugh….I dread dealing with his needs more than I dread surgery for myself.  I don’t know how I’ll afford the continuous care but I’ll need to see if we can get help for 24 hours because I can’t cath him with one hand nor can I transfer him into or out of bed with one hand.  Wish me luck on this one.  May take several weeks to work this out.
My work:  busy as usual, still needing me when I’m needed at home. 
So as a caregiver, I find there are many ways I need to provide care and to many people. Lynn and my daughter for their medical needs. Eli for medical and baby care.  My son for sending him off into the world with his own family.  And myself. 
Who takes care of me?  God.  He provides me with what I need, when I need it and thank goodness for it.  
PS:  All prayers are welcome!

Financial Support for Home Care

I’ve been thinking a lot lately about respite care.  I was asked to participate on a committee to look at creating a voucher program in Virginia for caregivers to obtain a small amount of financial assistance so they could afford respite care. I think the idea is wonderful.  So many of us need a break but don’t have close friends or relatives who can provide relief or don’t have insurance that will pay for it.  Unfortunately, funding will be limited and the need is great so many people will still have needs that will go unmet.
I was a consultant on the Committee, essentially one of the voices of those in need who could offer comment about the direction the plans were going.  As I listened to the experts discuss which resources currently available would be the best to contact as sponsors or how would those who need assistance hear about it, I realized just how lost most of us are in trying to figure out where to go and what to do.
I think of myself as being pretty knowledgeable about healthcare and medical systems.  I have a nursing background, though it’s been years since I practiced, and I work in a hospital so I’m familiar with how healthcare works.  However, I’m totally lost when it comes to knowing what to do about getting financial assistance or respite care.
When Lynn first started having difficulty getting around, we decided it was time to apply for Social Security Disability.  That was a 12-month struggle of filling out forms, getting rejected, researching the rejection reason, applying again, getting rejected again, appealing again, etc. until we could go before a real person.  Once we were able to see a judge, all he did was ask when Lynn got as bad as he was and approved the disability. (by the way, I did this myself without a lawyer so it can be done but it takes a lot of time to do it).
Naive me, I though, “great, he has disability now.  Finally, we will get some help.”  Wrong..though not totally.  He does get a monthly income now, much less than he used to earn when he was working but it certainly helps.  I thought; however, that he would also get medical care immediately.  I had no idea there was a two-year waiting period before he would be eligible for coverage under Medicare.  We were fortunate that I had insurance and had him on my policy.  What does someone who is totally disabled and unable to do any work do for two years without insurance?  Doesn’t the government realize that the cost of self-insurance is outrageous if you have a disability IF, and that’s a big IF, you can even get coverage!  Most people would be denied if they had to start from scratch in getting insurance and if you HAD insurance but lost your job and had to use COBRA to keep it, many people could not afford that cost either. It just doesn’t make sense to me that Medicare has a waiting period once disability is approved.
So we waited somewhat impatiently for Lynn to be approved for Medicare.  Again, naive me, I think, “great, now I can get some home care assistance.”  Wrong again.  Medicare Part A, which is free, only covers inpatient care.  Medicare Part B, cost a monthly premium which is higher than the cost I pay if I keep Lynn on my insurance at work.  So having Medicare does us absolutely no good unless he gets hospitalized. So I’m back at square one, my insurance doesnt’ provide for home care assistance on an ongoing basis so if I want someone to care for Lynn while I go into work, I have to pay for it myself, and from what I can tell, “it ain’t cheap.”
Someone told me I needed to apply for Medicaid for him.  Apparently there is some type of waiver program that provides financial assistance to caregivers who take care of family members at home so that the person does not have to be hospitalized.  So now I’m trying to find out about this waiver program with Medicaid; however, the best I can tell, Lynn doesn’t qualify. I may not be reading this right but it seems like the person has to have a monthly income less than $2000/month, which would qualify him but the person also cannot have any savings greater than $2000 which disqualifies us.  When Lynn lost his job, he had a retirement savings account that is more than $2000 plus all our assets are in joint accounts.  While we don’t have much, we usually do have more than $2000 on hand so that we can handle emergency  repairs and purchases.  These days if a car breaks down, or you need a new well (we spent $5000 putting one of those in) or new appliances, or any number of things, you need to have some money readily available.  Plus if I were to be out of work for an extended time, we would need some money to fall back on.  We just can’t afford to get “poor enough” to qualify for assistance.
It’s basically a catch-22, if you’re already poor, you can qualify for assistance, but if you’re not totally poor and only need help to supplement, rather than totally support your existence, there is nothing available.  Financial concerns is one of the main reasons I’m hesitate to hire someone to stay with Lynn.  I’m sure anyone who can provide the type of care he would need would charge around $20/hour.  There is no way I could afford paying someone 10 hours a day (I work an 8 hour day plus I have an hour travel to and from work) for five days!  That’s $1000/week or $4000/month.  I could probably get someone for half that amount if all they did was served as a companion but that would mean I would have to do all his physical care before or after going to work and have to keep an indwelling catheter in him which would make him prone to urinary track infections and increase his risk of hospitalization.
So until further notice, I’ll keep trying to manage a full-time job at home with help from family, friends, and God who always seems to meet our needs, one day at a time.  Anyone got any better ideas?