The emotional toll being a caregiver has on the individual
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/
I admit my life is very busy and very difficult. I also admit I manage it pretty well, but just because I have to do some pretty difficult tasks day after day and I keep doing them, doesn’t make me an angel. I realize that most people who are not full-time caregivers are amazed at what I do and how I manage but that just means I know stuff and I have abilities and that God blessed me with a servant’s heart that allows me to meet these challenges without quitting. It does not make me an angel.
I bet if you’re a caregiver, you’ve been called an angel a time or two, also. It’s a compliment that is intended to reward you for all your hard work, and I admit, it sounds nice, but when someone tells me I’m an angel, I’m embarrassed and I feel guilty because I’m far from being an angel.
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I always have
• feelings of deserving blame especially for imagined offenses or from a sense of inadequacy;
• a feeling of deserving blame for offenses;
• the fact of having committed a breach of conduct especially violating the law and involving a penalty
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.
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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.
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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.
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/
I had a scare this week thinking that I was about to experience the joy of food poisoning. As I was giving Lynn his bath, I started feeling really nauseous. Then my stomach starting burning and feeling crampy and I started sweating—all the tell-tale signs of food poisoning when you’ve recently spent hours sampling leftover food as you clean up from the day’s festivities. As it turned out, it did not develop into the dreaded torture of food poisoning and probably was a reaction to eating too many rich food products the same day on top of eating them several days previously. However, the experience brings into focus that as a caregiver, I can’t just get sick. As I’m preparing to be sick, I have to prepare Lynn for me to be sick. Let me tell you; that just does not seem fair….
Continue reading at https://multiplesclerosis.net/caregiver/i-cant-just-get-sick/
Let me start by saying that I’m not a psychiatrist nor a licensed counselor so what I mean is based on my own experiences in talking to others with disabilities, my own experience with The basic unit in society traditionally consisted of two parents and their children but the family has now been expanded to include any of various social units differing from but regarded as equivalent to the traditional family. members, and my personal beliefs. Therefore, you may or may not agree with me, and that’s fine because this is a very delicate topic and one which creates a lot of emotion in people.
When a person has a chronic health condition that cannot be cured, depression is prevalent. When the disease also affects the neurological center of the brain, the likelihood of depression is even more significant since the natural chemical reactions that would typically help the person stay balanced may be impaired. Therefore, for people with secondary or progressive MS, depression is common and often a struggle.
Loss of Direction or Purpose:
Though MS can affect children and teenagers, it most often affects adults. Once we reach adulthood, we have created in our minds our vision of what our life will be. We’ve thought about getting married, having children, getting a job, or establishing a career. Maybe we have bought a home and have a car(s), so we have a debt. We may have gone through years of school or training and “paid our dues” ready to launch into the rewards of our efforts and then something like MS hits. Maybe it’s been there lurking just under the surface with some minor annoyances like in Lynn’s case, or perhaps it hits with a vengeance, and an immediate loss occurs that may or may not be permanent. When that happens, the breaks are put on, and both the person with MS and their caregiver slam into a wall.
In addition to coping with the loss of function, there is also the loss of the dream. Lynn was a musician, an excellent tenor, and an incredibly talented carpenter and builder. He could do so much, but most of it required physical labor and dexterity. Over 2-3 years, Lynn’s MS rapidly progressed. His doctor could never quite say if he had Secondary Progressive MS (SPMS) or Relapsing Remitting (RRMS), but I think he felt it was Secondary, and we hoped for RRMS because let’s face it, there is nothing out there if you have SPMS or Primary Progressive (PPMS). Lynn was seeing the doctor every three months. Each time his abilities (other than his mind) were a little slower than before. Over 18-months, he lost his job and his ability to play musical instruments or to hold a musical note for an extended time.
He lost his identity, his purpose, and his planned direction for his life. He was the man of the house, the protector who could not protect but instead needed protection. He was the builder, the fixer who suddenly needed all things done for him. He would try to explain to others what to do and became frustrated because it would have been so easy for him to do it himself…before. Over and over again, he would say, “What good am I anymore?” “What am I supposed to do now?” He was angry, scared, and felt physically bad. He could see no purpose for his life and became depressed.
While he struggled with, “What am I supposed to do now?” I struggled with, “How can I do it all?” I was counting on him to build our new house, bring in a good income, help me keep up with three children, protect us, fix things, maintain the home and car and yard, and so much more that now was MY responsibility. And I didn’t want to do it. I was angry. I was scared. I was tired. I was overwhelmed. I was depressed.
Learning to Live Differently
We set about learning to live with his A disability is a physical, mental, cognitive, or developmental condition that impairs, interferes with or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions. What worked before did not work now, so we had to get creative in how we accomplished the tasks of daily living. I had so much to learn that he used to do. He had to learn patience and how to tell me what he needed. Our lives changed completely. I found a new purpose in being his caregiver, but he struggled to find any meaning. Fortunately, his son suggested he try to write fiction since he used to love to write when he was younger. He tried it and now has published two books, Rising Tide and Eden’s Wake. He gets up each day and “goes to work” either writing or marketing his books. It provides him with a purpose and a sense of accomplishment, which is what I think is the most significant problem that needs to be fixed for most people suffering from depression. The person goes from having a purpose in life to not having one that they can identify. Their job is gone; they can’t support their family; they cannot perform the usual roles of marriage or parenthood as they did before, positions that held significance for them before are now limited. So they flounder in fear, sometimes self-pity, hopelessness, worthlessness, and all those other negative emotions. I think it’s that loss of purpose that makes so many think of suicide.
Pain and Suffering
In addition to the loss of purpose, there is often the pain and suffering of MS. The public doesn’t hear about the pain and suffering. They hear MS and think of difficulty walking. They don’t think about the constant fatigue that makes you want to stop breathing due to the effort, the pain of muscle spasms and spasticity, the overall malaise and heavy feeling and something severe pain from nerve irritation. Pain and suffering that does not respond to treatment. Pain and suffering that seems never-ending and which may very well be.
If this person was a prisoner of war and people heard of treatment happening to them in the same manner that someone suffers from MS, they would wonder how they go on with life. They would see suicide as a justifiable option. They might also see it as the only option.
Reason to Live
However, I hope if you have MS that you do not give up so quickly. This is the sensitive part. My faith keeps me from seeing suicide as a reasonable option. For me, committing suicide means giving up on God. It means that I don’t care about how my family would cope afterward.
It’s funny how words or pictures will bring back such vivid memories. The Cultural Arts Department at work sponsored a poetry/prose writing contest recently with the theme, “Rhythm.” I don’t usually enter such contests but when I thought about the theme, it brought back memories of standing next to Lynn’s bed while he was in the ICU about three or four years ago.
That year was terrible. Just after Thanksgiving, Lynn was admitted to the ICU due to a urinary tract infection gone wild. He had been using an
• Situated outside, apart, or beyond
• not intrinsic or essential,
• having merely the outward appearance of something
collection device instead of an Existing or situated within the limits or surface of something, such as situated near the inside of the body or situated on the side toward the median plane of the body. intermittent catheter thinking it was less likely to cause infections. Well, he got one anyway. He saw his urologist who confirmed the diagnosis and gave him antibiotics. It didn’t help. The urologist took a culture the next visit and kept Lynn on the same antibiotic. This went on for three weeks while he got sicker and sicker; pus coming out each time he urinated. The urologist said he couldn’t figure it out but if I wanted to call the Epidemiologist, go ahead. So, I did; turns out the urologist didn’t read the culture. If he had, he would have seen that the bacteria Lynn had was resistant to the antibiotic he was taking. (Another good reason to push back if your care isn’t going the way you think it should.)
Unfortunately, getting the right diagnosis was too little too late. By the time the infection was showing improvement, Lynn was not eating, extremely weak, and felt so terrible that HE asked me to go to the emergency room (He never wants to see a doctor so this was a big deal). He told the Emergency Department doctor he couldn’t eat because he felt like he could not swallow. They thought he might be having an exacerbation. Into the hospital he went in order to get a nasogastric (NG) tube inserted to feed him. Shortly after insertion, he coughed the tube up part of the way into his lung as he was receiving a tube feeding and ended up with pneumonia. The pneumonia lead to septicemia and he ended up in the ICU with a body temperature of 90o; yes, I said 90o. Three long weeks after this admission, he was released home; very weak and still not feeling very well.
Three months later, we were back again when he just couldn’t stay awake. I had been saying for a few weeks that I thought he had sleep apnea pretty bad so he saw a sleep specialist and was put on CPAP and then advanced to BPAP. His lungs were retaining large levels of carbon dioxide even with the respiratory support. The respiratory therapist who knew him from a prior admission, let me know that his lung capacity was significantly less. As his CO2 levels continued to rise, I was pulled aside to let me know that if they could not stop the continued elevation cycle, they would have to put him on a respirator. They called in an anesthesiologist to evaluate and he recommended a change in his setting on the respiratory support being provided. They wanted to give that thirty minutes to see if it would work but then it was either put him on the vent or he would likely have a respiratory arrest. The following story I wrote for the contest, describes how it was to wait those thirty minutes.
Are you prepared to spring into action for an emergency? Just because you are a full time caregiver, doesn’t mean the world stops sending you other challenges so you can focus on the one needing your care. Most of us have other family members—children, parents, siblings, even close friends or others who are near and dear to our hearts. What happens when they have a crisis and they need you? It’s a good idea to have a plan in place for just such an emergency.
Last weekend, my Mom seemed to be having a stroke. Suddenly, she could not say what she wanted to say but instead a weird combination of words came out. She was fully alert and aware that her words were garbled but unable to get what was thought in her head to come out of her mouth. Thought there were no other symptoms of a stroke, dysphasia is a potential sign of stroke and one that should not be ignored so I needed to get her to the emergency room.
It’s important in times of crisis, to be able to sit aside as much emotion as possible so that fear and anxiety does not prohibit you from reacting. Having originally been trained as a nurse, I had experience is becoming “clinical,” that is you start assessing major bodily functions, determine what is working and what is not and then plan quickly to take whatever necessary steps come next. Living in rural Virginia, our rescue squad is volunteer and doesn’t always have a team at the station plus the rule in an emergency is to take the patient to the nearest emergency room. I wanted her to go where her medical records were located if possible and since there was no breathing concern and other vital signs were stable, I realized the quickest way to get her there was to take her myself.
Unfortunately, taking Lynn with us was out of the question. I could not manage to care for him and my Mom at the same time so as I was having Dad help Mom get ready to go to the hospital, I immediately put an
• Left within a bodily organ or passage often to promote drainage
• Used of an implanted tube (such as a catheter) temporarily or long-term
catheter into Lynn so that someone else in my family could stay with him. Then I called his son, to come spend the night just in case but he lived an hour away; so I called my daughter who only lives 10 minutes away and she came right over. She finished helping my parents get ready while I pulled together Lynn’s essentials—catheter (done), night time medications(assembled and labeled), morning medications (assembled and labeled), instructions for other comfort needs (written and placed on kitchen table.) Checked and double-checked. Lynn had or was about to have all he needed for me to leave immediately and stay away several hours.
My family has learned that when I call for help, it usually means I need to be relieved of Lynn’s care for an extended time. They have made a commitment to do what they can to always be there for us and having the knowledge of that commitment gives me such peace knowing that they have my back where he is concerned. I have an emergency folder prepared in case something happened to me and I can’t do the prep work for when I’m not here. It’s good to have that available and to update it periodically since care for anyone with a long term condition can change over time.
continue reading at: http://multiplesclerosis.net/living-with-ms/spring-into-action/
Lynn and I had to make a very difficult decision this week– whether to cancel our summer vacation or to go as planned. Now, on the surface that might not sound like such a big deal, but it was. Since the children were small, we have been going to the beach in North Carolina for a week during the summer. It’s the only type of vacation we take all year. Now that the children are grown with families of their own, we still invite them as our guests to spend the week with us at the beach. It’s a great way to reconnect and create memories to look back on during the cold winter months. Over the past two years we have also included both my parents and Lynn’s mom (all in or near their 80’s). Both of us love the beach and the family time and we had traditions of fishing trips, play time in the pool, and lots of grilling outside. However, Lynn’s secondary progressive MS has changed all that.
Trips to the beach over the past ten years have been difficult for Lynn. He doesn’t tolerate heat well so we tried a cool vest – didn’t work, and we tried early morning fishing –took too long to get him ready to go so by the time we got there, it was already starting to heat up. We rigged ways for him to hold his rod to fish but though he could hold it for a few minutes, his spasticity prevented him from having a good grip or being able to reel in anything that might nibble at his bait so it really took the joy out of fishing. Plus there was the issue of needing to intermittently cath him every hour or so… The result was—no fishing. For a couple of years we took fishing gear just in case but last year we didn’t even do that.
We tried borrowing a floating wheelchair so Lynn could get into the ocean. That was fun… for about the first five minutes. It took three of us to stabilize the chair in when the surf rolled in so he wouldn’t flip over. He and the rest of us got beat to death by fighting the waves so we tried just sitting him on the beach. (Don’t worry; he had a life jacket on.) He, of course, could not get away from unexpectedly higher waves so he got whipped by that process too; not to mention the fun of trying to lift him from the ground up to a floating wheelchair as the sand shifted out from under us every few seconds. We decided not to do that again.
Last year we found a really nice house that was handicap accessible. I was so excited. It thought, “This is it! The solution to our vacation woes”. It had ramps, an elevator, a roll in shower, handrails on the wall, and most importantly a ramp into a pool. It seemed like the perfect solution except the room designed for the disabled person to use was the smallest room in the house and was filled with furniture. As any of you know who have traveled with someone disabled, lots of equipment and supplies are necessary for ongoing care. Therefore, this room just didn’t meet our needs. We tried re-arranging the furniture so he could get his power chair in and out easier but we were warned not to do that again next year. We also thought about using the larger downstairs bedroom but were told we could not do that either because his wheelchair would damage the carpet. Okay, all the added restrictions and challenges were starting to make the place less desirable; then, I found out we could not have a late check out this year. That was the straw that broke this camel’s back. It takes three hours to get Lynn ready for the day. With a 10 a.m. checkout, that meant a 7:00 a.m. get up time if we did nothing but get him ready to go but when checking out, you have to do the packing, straightening up, throwing away food, etc. which takes at least 2 if not three hours when you have 7 people using the house. And while they all pitched in to take care of their own things, I still had all our packaging and packing to do to get us out the door because everyone else was busy with their own. With a five hour drive home, getting up six hours before 10 was just too much for me to accept.
So we are canceling our vacation.
Continue reading at http://multiplesclerosis.net/blog/caregiver-perspective-letting-go-of-unrealistic-plans/
As a caregiver, I understand that my role involves providing a lot of physical care. For any caregiver, how much care is provided depends a lot on how significant are the limitations of the one for whom you’re caring. For me, the physical demands are many because Lynn’s physical limitations are many. But, in addition to providing his physical care, I also need to provide mental, emotional, spiritual, and social care. The physical care is pretty consistent in that I know in advance what I’m going to need to do for him and how to do it; however those other “care” needs are more unpredictable.
Mental and Emotional Care
We’re pretty lucky in that so far Lynn’s MS has not affected him mentally in any significant way. He has had periods of depression and is in fact, on an anti-depressant to address that problem. When he first became depressed, I didn’t catch on right away to what was happening. I expected him to be down; after all, he had gone from being a very physically active independent person to someone totally dependent on others to provide for his every need. He had a right to feel frustrated, angry, discouraged, afraid, sad, and any number of other emotions. Plus, he just felt bad. Since he had so many legitimate emotions that were healthy and normal for anyone going through what he had to endure, I didn’t catch on to the fact that his level of depression was growing deeper and deeper. When I did finally catch on was when he started making statements such as, “Why bother (to exercise); it’s pointless anyway.” “What am I any good for anyway? All I am is a burden.” He also stopped eating, stopped being interested in any decision making and seemed totally disengage from his life. Suddenly, I had that “ah, ha” moment and got in touch with his efforts made to maintain or restore physical, mental, or emotional well-being especially by trained and licensed professionals provider to get medication to help. Fortunately, it did. For the most part now, he manages depression pretty well and doesn’t go into long periods of being down, but it’s something I look for all the time.
In addition to depression, he has a little forgetfulness but he’s lucky; he doesn’t really experience the memory issues that many with MS battle every day. He occasionally needs a reminder but most of the time the memories come back with a little prompting.
I believe that we are spiritual beings. I know that, for Lynn and me, we count a lot on God for meetings our needs. We look to our Lord and Savior to carry us through a crisis and to look out for our needs. Our spiritual side is what keeps us going, what provides our comfort, and is often what restores our hope. Therefore, it is
• Of, relating to, or constituting the essence
• inherent, of the utmost importance
• basic, indispensable, necessary,
• being a substance not made by the body in an amount great enough for normal health and growth and requires us to eat it instead.
that I factor in that he needs spiritual care as well as physical care. When there are no viruses or other contagious bugs in the air, he goes to church; however, during the winter months, that’s too risky…too much flu and other nasty bugs to be shared. Therefore, it takes more effort to maintain the spiritual side of life. Lynn has CDs that he listens to which bring God’s word to his mind and helps him stay connected to his faith. In addition, he listens on line to the actual sermon presented at our church. We also have many discussions about our interpretations of God’s word and how Jesus’ teachings affect our lives. It’s a very important part of his care to help him meet his spiritual needs and is why I feel he has been able to avoid greater bouts of depression.
Continue reading at: http://multiplesclerosis.net/caregiver/many-faces-of-care/
I have a tendency to feel sorry for myself at times. I also know that I may at times play the martyr. What I didn’t realize is that I sometimes threat others the way I don’t like them to treat me, too.
Feeling Sorry for Myself
When others are able to go out, make plans that they can actually carry out, sit quietly and read or watch a TV show without interruption, I feel jealous. I can hear the smallest violin in the world playing, “Poor Pitiful Me,” while I sit and think about how unfair it is that I can’t do those things. I look on with envy at those who can eat while their food is still warm or who can go to bed before 2:00 a.m. when I’m still up preparing dinner or feeding Lynn. I want those options too and I sometimes resent not being able to be like everyone else.
Then, I look at Lynn who can’t walk, can’t feed himself, and is totally reliant on someone else to do for him. I see how sad and guilty he feels when he watches me give up plans or be unable to have fun like others. I hear him apologize when I’m struggling to stay awake to finish my day or when he has to get me up at night. I see how his life is so much harder than mine and I’m ashamed of how I feel though I know I’m human and my feelings are natural.
Playing the Martyr
Though I don’t consciously play the martyr, I think somewhere in my subconscious I deny myself the opportunities I mentioned above because I want to be recognized as self-sacrificing. Could I go to bed sooner? Maybe, if I let some things “go” or if I did not indulge in distractions like listening to books on tape or reading about my friends on Facebook. When others offer to stay with Lynn, I’m reluctant to say yes because I don’t want to appear as if I’m neglecting him or I say no because I’m concerned since they don’t know his comfort needs, that he might be uncomfortable while I’m away. I also feel that as I become more isolated from participating in activities that it’s more and more difficult to bring myself to socialize. I also admit that I like receiving praise for what I do. I like the compliments and recognition that come with being the self-sacrificing spouse. Yes, I admit it; I have a “sick” personality at times.
Continue reading at: http://multiplesclerosis.net/living-with-ms/character-flaws/
“Giving the gift of receiving,” sounds like a contradiction. How can you give a gift that you receive? I think you can and I think it can be the greatest gift you give and receive all year. Here’s why.
As a caregiver for someone who is totally disabled with very limited abilities, my world is very structured and organized. It has to be in order to keep Lynn healthy, to meet all his abundant needs, and in order to get all those things done that must be done by the end of each day. Because I must be so organized, changing my schedule or having someone come in to “help” me is often very disruptive. I know they are well meaning and I know they truly want to help; I get that, but truthfully, it’s also disruptive even while helpful. If someone is coming over to help, they typically want to do it first thing in the morning to get it out of the way so they can get on with their day. I would want to do that as well so I understand why they ask to come over early. However, in order to receive visitors, I have to make sure that Lynn’s three-hour morning routine is completed before they arrive. So if someone wants to come in “mid-morning” at 9:00 a.m. because he/she is an early riser, then I must get us up at 6:00 a.m. Getting up at 6 doesn’t sound bad except when you realize we can’t get to bed most nights until 2 or 3 a.m. Therefore, before a visit, we are often getting a “nap” rather than a night’s sleep which compromises not only my well-being but Lynn’s since he battles fatigue.
Another concern for letting people give their help is potential exposure to infections. When family members or close friends come over, they already know our “rule” for visiting–if you might be sick, don’t come! That little sniffle might not stop a visitor from spreading holiday cheer but from our perspective, they are bringing in a weapon that threatens Lynn’s safety and welfare. His immune system is compromised and an innocent, though irritating, cold for most people can put Lynn in bed or even the hospital for weeks. I remind anyone who asks to come over of our house rules, but occasionally they still show up with the sniffles thinking that they just won’t touch him or sneeze/cough in his direction and it will be okay, but what they forget is that the greater spread of their virus and other germs is not the cough or sneeze (though such an action carries the germ a good distance), it is the unwashed hands after such an event that touches something he or I use. Since I provide all his care, not only do I have to limit his exposure but mine as well so that I won’t be the carrier into his environment or I won’t become sick and unable to care for him. Therefore, though I try to be kind, if someone is sick I often ask them not to stay and help.
Continue reading at: http://multiplesclerosis.net/living-with-ms/giving-gift-receiving/
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.
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.
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/
In as much as we have recently experienced the Thanksgiving season, I was thinking about the impact Multiple Sclerosis has had on our lives and trying to think of reasons why I could be thankful for MS. What comes to mind first, of course, are all the challenges but if I really focus I can think of several rewards I have received related to this condition. Here are a few.
Coping with the challenges of MS has made Lynn and me closer. Before MS, we were two married, independent partners. We each functioned well alone so there were many aspects of our lives that were not shared. Due to his dependence on me for just about everything, we are truly one now. We share thoughts and fears, good times and bad as a team rather than as two people with their own agendas. It has made us recognize our own unique needs and struggles and we have more respect and admiration for each other as we recognize how each of us sacrifices for the good of the other.
For the People I have Met
In many cases, there is an instant bond when I meet another person who has MS or is a caregiver for someone with MS. Instantly, I know the challenges faced and perseverance required every day just to get by if they are dealing with this complex condition. Though that understanding, there is a connection that does not exist with those who have not had to face those same experiences. I now have friends I’ve met through blogging that I expect never to meet in person but who share with me their concerns and offer support for mine. I’ve also met many health professionals who have been awesome and who have offered so much assistance and encouragement to both of us. I am thankful for each of them and the efforts they have made on our behalf.
Continue reading this article at: http://multiplesclerosis.net/living-with-ms/thankful/
I attended a webinar today called, “Grief: What Helps When It Hurts” by the Hospice Foundation of America. I was interested in this presentation because I work with a lot of employees who have lost family members and struggle when they return to work. The focus of the presentation was about grieving the death of a loved one but many of the principles presented also apply to the grief we experience as caregivers.
The effects of grief are vast. Grief can have a physical, emotional, cognitive, behavioral or spiritual impact. How someone reacts to grief is very individualized and impacted often by their own health, their relationship with the person who experienced the loss, and what they believe is the acceptable way to cope with the loss. It’s a roller coaster ride that lasts a long time and may come back to hit us in the gut when least expected. Let me share with you how grief has affected me.
First, let me say that Lynn is very alive and aware. What I am grieving is not his death or even an anticipation of his immediate death. What I am grieving is the loss of how he used to be. I grieve such things as the loss of all the things he did for me, the fact that we could go out and share in activities together, his ability to be independent, and my freedom to have time to myself. I miss his singing, the drama programs we used to do together, the ability to go visit family and friends or even go to a movie. I grieve the fact that he will never be “able-bodied” again; never able to do what he wants to do when he wants to do it. I grieve the loss of the dreams we had for a new home, travel, and financial security by the time we reached retirement.
The physical side of my grief shows up as constant fatigue, headaches, body aches (though that could be the constant lifting I do for him, too) and irritable bowel syndrome. I also am overweight due to eating to keep my energy level up and to stay awake because I typically don’t have the option to get more than 5-6 hours of sleep a night. I occasionally have heart palpitations and swollen ankles. It’s difficult to tell if these issues are related to grief or lack of sleep or excessive physical demands but I suspect they are all intermingled.
Emotionally I have periods of sadness, anger, anxiety, and fear—sometimes separately, sometimes all at once. I can be feeling sadness immediately after a good experience or anger about being afraid. Emotions run from subtle to extreme all in the same hour though most of the time, I just feel numb. I’ve learned to compartmentalize my emotions; to separate them from what is currently happening so I can maintain control.
Cognitively-I can become forgetful. Lynn tells me things and if it’s not “essential” information, I can’t remember any aspect of the conversation. It’s like I’ve had a black out. Last week I was assembling his medication for the week and I lost one of his bottles of pills. I knew I had it just moments before but I searched everywhere I could think of to find it…unsuccessfully. The next day I was sitting at the kitchen table and saw the bottle sitting on the “ice dispenser ledge” on my refrigerator door. That ice dispenser doesn’t even work! I have no memory of putting it there or seeing it when I was looking for it–total loss of recall.
Continue reading this post at: http://multiplesclerosis.net/living-with-ms/handling-grief/
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.
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 remember the first time I laughed at his misfortune I felt guilty. Now, however, I try to find the humor in difficult situations and it makes them a lot easier to handle. I can remember a time when he fell in the bathroom after getting out of the shower-butt naked. He landed between the shower stall and the commode. He was in the small bathroom; just big enough to put in a shower, commode and sink and not much else. Here is my 6’husband sprawled out in a rather awkward position at the end of the day when he had no energy left to help himself up. He could have gotten seriously hurt! I immediately ran to check on him when I heard him fall and went to work shifting body parts one way and then another trying to gain leverage somewhere so that I could get underneath him to maybe be able to get part of him on the toilet so maybe I could push something else underneath to gain more height. We worked and we worked and we worked until finally, in exhaustion, I started to laugh. Looking at him with my hands on my hips, I say, “It’s another fine mess you’ve gotten us into Ollie.” Then we started talking about “what if” someone saw what we were doing and their reaction. It just got funnier and funnier as we described what they might “see” or think. Finally, the tension was released; we had a new idea come from the absurd suggestions we were making; and I finally got him off the floor and onto the toilet where I could move him to the rollator he was using then.
There was another time we laugh about often where “Murray’s Law” was working overtime. Lynn’s book, Rising Tide, had recently been released and we had been invited to appear on a local public television program to talk about why he took up writing and how we coped with his changing needs associated with having MS. It was a great opportunity and we were both excited. Well, it was raining. This was before we had the conversion van and even before he was using a wheelchair (though he used the seat on his rollator like one). I rolled him out to my Impala, lifted him into the car, in the rain, and off we went more than a little damp for our television appearance. The studio was an hour away. We left a little early because I was unfamiliar with the area where it was located. We drove back and forth and back and forth trying to find it (we had no GPS) making us very nervous that we were going to be late. We finally found it and unloaded, this time in a drizzle. They rushed us back to the studio where we would be interviewed so we could have a brief rehearsal before the taping.
continue reading at: http://multiplesclerosis.net/living-with-ms/sometimes-ya-just-ta-laugh/
After years of caregiving, I believe I know Lynn’s body and his emotional and physical needs as well or better than my own. Actually, I probably know it better because I don’t pay attention to my own. By becoming that familiar with him, I’ve been able to take quick action to prevent minor problems from becoming major ones most of the time. However, by being so vigilante and adapt at making these assessments, it has resulted in a different problem—Lynn expects me to intuitively know what he needs!
For example, Lynn uses an air cushion seat. The cushion is made up of multiple rows of air bladders that disperse air away from the weighted area (where he sits) to the outward bladders. He then sits on a small layer of air which minimizes the pressure against his buttock. The device is great because the firmness of the cushion can be adjusted as needed for comfort. The bad news is that the material it is made from is like a bicycle tire and wears in time to produce tiny little holes which allow the air to leak out. I then have to find the hole and patch it so he won’t be sitting on a flat cushion. Periodically he will tell me to “check his cushion.” Unless there is truly a leak, it’s difficult for me to know from time to time if there is an actual difference in the inflated areas. He will say, “My butt hurts.” I’ll respond, “Do you think the cushion needs adjusting?” He responds, “Yes.” I ask, “Do you think it needs more or less air?” His response, “I don’t know, just check it.” I then proceed to either add or remove air to make a change of some type. It doesn’t help to ask if “that” fixed the problem because he can never tell. This can be rather frustrating as you can imagine because he wants me to fix a problem I can’t “feel” and to know if it’s “right” through my intuition.
If I look at this behavior as him being lazy and wanting me to take all responsibility for his comfort, then I get really annoyed, but if I remind myself that maybe the reason he can’t tell me if it’s right is because he has “butt de-sensitivity” then I’m a little more tolerant. Maybe the reason he can’t tell me how it feels is because he’s been sitting on those nerve endings so long that he has lost sensitivity in that area. Think about it…if you sit in the same spot for an extended period of time and don’t move, can you even feel your skin touching the seat anymore? After a while it’s as if you and the seat are one and it’s difficult to know what is wrong if it’s gotten uncomfortable. On the other hand, MS affects nerves; nerves transmit signals through the skin; could MS affect transmission of touch… sure, why not?
The other “touch” issue though is itching. He no longer has the strength in his hands to scratch an itch. He can slightly rub an itch but he can’t produce enough pressure to really dig in and scratch. He feels the itch, he calls for me to come scratch it and says something like, “My leg itches; scratch it.” He seems to expect I’ll know which leg, where on the leg, how vigorous to scratch, and when I’ve stopped the itching. Now, in that situation, I think he just has come to expect that I’ll “know” what he needs. I have to remind him that I can’t feel what he feels so he will need to stay “engaged” in the process.
Continue reaching at http://multiplesclerosis.net/living-with-ms/can-scratch-leg/
When Lynn and I were dating, I knew that his father had only lived to be in his forties and that he died from complications of MS. Having a medical background, I had a vague, general knowledge of the condition but primarily just enough knowledge to know that it affected mobility and the eyes and I had had a few employees make
• An adaptation or adjustment especially of a bodily part (as an organ)
• Adjustment to new circumstances;
• Adaptation; something fulfilling a need
requests related to memory. I knew that genetics was a factor, but not an absolute, in determining if he would also suffer from MS. I also knew that while Lynn had his vises, he was good about what he ate and he exercised regularly; so, in my opinion, he was more likely to have complications from his smoking than he was from having MS. I seriously considered all these factors and went into my marriage with full knowledge of what I might encounter. I actually was very reluctant to get remarried, not due to the MS, but due to the fact that marriage was so difficult and even if you tried your best, you can’t control the other party. When I finally decided to marry Lynn, I went into marriage with a full commitment to staying married for sickness or health, richer or poorer, etc. I had survived one divorce and didn’t want to go through another. In other words, my fear was not of the MS but of the relationship difficulties itself.
And, I was right to be concerned. Those first few years were VERY difficult trying to blend two families; taking two very independent and totally different personalities and trying to learn how to compromise and adapt. We struggled. We had counseling. We became distant and we sought and found ways to become closer. We had to work at it; it did not come naturally to either of us. We were both very afraid of being hurt again and therefore, afraid of totally giving ourselves to the marriage. After all, we both knew how it felt to have loved and lost; but throughout it all, whether or not he might have MS was never a factor.
Then, one day I found him comparing how fast he could wiggle his fingers on one hand as compared to the other. I could see the difference. He had seen a physical therapist about occasionally having “drop foot” after exercising. He had complained of numbness and some weakness in his left leg which was attributed to sciatica. I asked him during those occurrences if he had mentioned his family history of MS and he said that wasn’t what it was and his doctor had his family history. I knew then; however, that he had MS. My daughter, who was in nursing school at the time, and I talked about the fact that we both believed he had MS. Even his son, suspected it but Lynn was in denial. I finally got so frustrated that I confronted him about my concerns and demanded that I be allowed to go with him to his next appointment because he would never give me a straight answer about what was discussed.
As it turned out his next appointment was with a cardiologist (he also has mitral valve prolapse). The doctor asked him how he was doing; then, he asked me. I told him Lynn’s heart was fine but something was wrong with his nervous system. Lynn shot me a look of daggers but the cardiologist promptly set us up with a neurosurgeon because at the time, I thought it was possible it could be a disc issue (since he said MS had been ruled out by his doctor already). The rest is history. Blood work was done; as was a MRI and a lumbar puncture, and as we were driving home from an anniversary visit to the beach, he got the call that said it was MS.
I already knew in my heart what the diagnosis would be and I think Lynn knew but didn’t want toknow. However, actually hearing it still kicked us in the gut. I have to be honest that fear of what was ahead did cross my mind. Lynn and I were distant emotionally at that time because he would not share his thoughts or his life with me. He kept me at a distance. I think he was afraid I would leave if he got MS. His parents had divorced while his father had MS and though I don’t think the divorce was due to MS, it probably played a part in it. However, for us, it had the opposite effect.
I became Lynn’s advocate. I shielded him from too much information (at his request; he still wanted to deny as much as possible); I did all the communication with the doctors and healthcare facilities. He finally recognized that he needed me and he let me in and though that process we are closer now than if he had not had MS. If he had not been diagnosed with MS, who knows if our marriage would have survived? I like to think it would have because we are both Christians who are totally committed to staying together but I’ve learned you can never say never…about anything.
continue reading at: http://multiplesclerosis.net/blog/marriage/
One of Lynn’s regular responses when someone asks how he is doing is, “I’ve been worse.” It conveys to the person asking that he’s not feeling great but that he’s grateful he’s not feeling worse. It also allows him to avoid discussing how he really is and it shows a positive attitude, which is something that he tries to always maintain. However, it also denies the fact that he actually doesn’t feel well at all.
Several months back I challenged him on that statement. “So, if you have felt worse, does that mean you feel good now? Are you not allowed to admit that you feel horrible because you have made such progress toward feeling better?” He thought about it for a minute and admitted that he just didn’t want to confess the he didn’t feel good yet. He felt that he had been feeling bad for sooooo long that no one would want to hear that he felt bad and yes, he felt much better than he used to, so shouldn’t he feel grateful rather than complain?
I think his attitude is pretty common for those who have chronic health conditions. They get so tired of feeling lousy that they hope by ignoring how they feel; it will not be so bad–sort of like that saying, “fake it till you make it.” But does it really work to fake that you feel good when you feel like taking your next breath is too much work or if you had the choice to have your leg amputated versus dealing with the spasticity and muscle spasms every day, you would choose amputation if they could guarantee you wouldn’t have phantom pain? I don’t think you can ignore the fact that you feel that bad. You might keep it from others but you can’t keep it from yourself. If you do, then you may stop trying to get better and just give up, seeping lower and lower into depression.
Lynn and I tend to try to identity a reason for why he feels bad each time that he does… “Must be a low pressure front coming it,” “It’s the Rebif,” or “It’s pollen.” We both know that “it’s the MS” or the “hypothyroidism” or the “heavy metal detox,” but if we can attribute it to something more transient, then it might go away sooner and that’s comforting. Like everyone else, we try to fake ourselves out into believing this is not permanent.
continue reading this post at: http://multiplesclerosis.net/living-with-ms/ive-felt-worse/
I was so excited! I’ve been hoping to sell that land for years now even though it did not have a “for sale” sign posted. Was God sending me an answer to prayer? Would it really be this easy that I could finally get that land paid off and maybe have enough left over to pay some bills as well? Even if there wasn’t money left over, it would mean being able to pay off the $43,000 loan on that land! We would lose a lot of money, no doubt, because we had a lot of money invested in the land. We had paid to have approval for a pond to be built (which never was); Lynn had spent two years putting in a cinder block full basement and foundation for the planned timber-frame house; we had the timbers already cut for the tongue and grove frame sitting in a storage container on the land. All of that would certainly be lost in any deal because it was needed for our house and probably would not be of interest to anyone else. However, I was willing to let that go because the reality is….I don’t want to move there anymore.
We bought that land in the early 2000s. Our children were still in high school. Lynn had not been diagnosed with MS. He was a carpenter and after we got married, he wanted to build a house that was “ours” and not live in the one that I had built with my first husband. He drafted plans for a timber-frame house that was beautiful. We found the perfect land that would support a full basement (where the children’s rooms would be)with a main floor two stories high with an open ceiling and a loft on each side of the second story with nothing but windows in the back. A full wrap-around porch, a stone fireplace, an attached two car garage on six acres of land with access to a pond in the back. It was going to be gorgeous! Plus, just in case Lynn did get MS one day, the doors would be wide and we were considering installing an elevator for access from the ground to the main floor.
Lynn started to work on it…slowly. He was doing it all himself. First, he waited on the Corp of Engineers to approve the pond installation. Hurricane Katrina caused a two-three year delay waiting on the pond. We finally stopped waiting on that and he started putting in the foundation. He laid the cinder block, alone for the most part, after work and on weekends. Then, five or six years into the project, he was diagnosed with MS. At first it didn’t bother him but gradually, he couldn’t work without a helper (me or one of the boys) and then he couldn’t do more than an hour at a time before he was too exhausted to keep going.
Now it’s been four years since we have even set foot on the land. The house we live in is in bad need of repair and maintenance which he can’t do and I don’t have time or know how to do it. The economy is such that selling our current home and making enough to be able to afford to build the new home is unlikely with all the repairs needed here; plus where would we live till the new house could be built? The timbers previously cut have dried over the years so it’s unlikely they would fit together well without being re-cut and adjusted. It would take a lot of money to build that house now. Plus, my daughter is now married and lives ten minutes away with her husband and most importantly, my grandchild. She and her husband help us out so much and if we moved, they would not be able to do. So, in my mind, I’ve let go of the dream and faced the reality that we need to sell that land and recoup whatever amount of our investment we can so we can do repairs on this house and pay off many of our mounting bills. Therefore, this call was a blessing in my mind and I excitedly danced down the hall to tell my husband.
Whose face immediately crumpled at the news as he fought hard not to cry….
continue reading at: http://multiplesclerosis.net/living-with-ms/reality-dreams-dont-mix-one-wins/
I’m very fortunate that Lynn rarely directs anger at me. He gets angry at his situation or the equipment he is using when it malfunctions but he’s very careful not to blame me. He’s very considerate of my emotional needs and very grateful for all that I do for him. But he also has all his mental functions intact. Not everyone who cares for someone with MS or other neurological conditions is that fortunate. When MS dementia sets in, the person with MS might not have a clue as to who their caregiver is or why they have to do what is being demanded of them. It’s heartbreaking to be in that situation when as a caregiver you are doing your best to keep them safe and healthy but they are fighting you each step of the way because they think you’re trying to harm them. I can’t image anything much more frustrating. In those situations you might begin to doubt your own sanity or if it’s the right time to say, “no you can’t have cake for breakfast,” or would it really be okay this time.
There are many challenges that come from being a caregiver that you deal with every day in the privacy of your own home. I know I often devise ways to handle a challenge that to others who might observe from the outside looking in might be seen as being weird or even unsafe but unless you walk in my shoes and have my exact same resources, skills, and time constraints; don’t judge what I do because at the time, I’m probably doing my very best.
It’s easy for people on the outside looking in to make judgments on what you should or should not do. They’ve read an article, heard a story, watched Dr. Phil, or taken a class and have become experts on what should or should not be done. I know mothers are often criticized about how they handle a toddler who acts out in a store or disrupts a waiting room or whatever. They get “those stares” that cast judgment and they feel embarrassed and ashamed to be caught not being the perfect mother. The same holds true with caregivers. In public, Lynn does not want to be fed. He prefers to try to feed himself so I always have available for him special utensils for that purpose and finger foods he can pick up and eat without too much difficulty. However, it’s usually not the same food as everyone else and he usually makes a mess. I can sometimes see the pity or embarrassment in the eyes of others which unfortunately makes us both want to avoid eating in public.
Continue reading at: http://multiplesclerosis.net/living-with-ms/others-see/
There are those who are interested in details—family members, close friends, and confidantes—those groups get more information, but it’s still filtered. People in those groups want to know if there are any new problems and what is being done about them is there is. They want him to get better and make progress. They don’t like for him to feel bad or have to go through difficult times and they seem so disappointed if I tell them, again, that he feels “bad” or is exhausted and just has no energy. So I just share the surface things and change the subject.
The fact is, Lynn is totally disabled. That’s not likely to change. He feels lousy on some days and less lousy on others. He’s tired every day but some days he’s just tired and other days he’s exhausted to the point that he couldn’t move his power-chair to get out of the way of a car speeding toward him. We attribute those good and bad days to a variety of factors but in reality, “who knows?” It is what it is.
So then, how do I respond when someone asks me, “How are you? No, really, how are you?” Usually I still just smile and say, “I’m doing okay; it’s hard but I manage.” I don’t believe that they really want to know how my life really is. It would sound too much like I’m whining because if I really told them like it is, it would go like this:
continue reading at: http://multiplesclerosis.net/blog/really/