Caregiver Support

MY INVISIBLE MS: SUPPORT FOR CAREGIVERS

Thank you to Sophia Nuamah for submitting the following guest post for the MS week. I appreciate her support for multiple sclerosis research and the family of caregivers around the world. world_ms_day_2019-us
Ms. Sophia Nuamah
MyTherapy
Landwehrstr. 60/62
80336 Munich, Germany
www.mytherapyapp.com/



Chronic diseases such as MS are usually termed as Invisible illness because so many people sometimes, don’t even believe you’re sick because the symptoms are not seen.
People diagnosed with MS can sometimes develop complications like Mental changes, Depression, Epilepsy, MS tremors, problems with speech and swallowing, Paralysis (typically in the legs), etc.
Some even experience relapses as they experience new or worse symptoms; and may experience some degree of reduced mobility at some point in time, and this can make everyday tasks difficult or even impossible without help.


Caregivers are noteworthy because of the critical role they play in the lives of people diagnosed with MS because there comes a point in time when they need extra help in performing normal daily activities.


Caring for someone with MS is physically and emotionally challenging. When you’re giving care and support to someone else, it is mostly very easy to disregard your own wellbeing. But it’s really important to look after yourself, mostly because staying healthy means you’ll be able to continue giving care.


Some of the ways to help maintain your physical and mental wellbeing are to take a break when needed to look after your health, renew your energy to be able to keep on with your caregiving and get help/support from others, to make sure you’re not doing everything by yourself.


For people living with MS who care for themselves, it is very important to get a support system and build social relationships to help you through the challenging stages of the disease.
Talk to people- this could be a friend, family member, a professional, or someone else who is also diagnosed with the disease or has experience in giving care; as MS can have a big impact on the people close to someone who’s living with the condition (family/friends), especially if they start to rely more and more on support from them every day.


Both people affected by MS and caregivers find that it helps to talk about their feelings and experiences of caring for themselves or other people.


Nevertheless, there have also been some technological advances in helping people diagnosed with MS manage their condition better to live normal productive lives like medication reminders to efficiently follow their treatment plans and smart devices- installed in homes to counter the problem of reduced mobility.


All these are signs of progress and hope for those living with MS, who have suffered in silence for so long; and though there’s a long way to go when it comes to invisible illness like these, Increased public awareness and more useful tools like this are making life easier for the people with them.


This infographic was created by the MyTherapy team, free app for Android and iOS.

Unexpected Sadness

I got hit by feelings of sadness unexpectedly today. Keeping my self out of my husband’s sight at all times, I had to work really hard to hide the fact I was very close to crying. Usually, I guard my emotions well, and rarely break down. However, I have one weakness that I can’t seem to guard against: music.

Fell in love with his singing

Lynn had the most beautiful tenor voice you would ever want to hear before his MS progressed this far. It was his singing that sealed the deal for me in deciding to take the chance on marrying him and bringing our two families together. I had been burned badly in my first marriage and was very hesitant to remarry. Lynn was just as reluctant as I was as far as setting a date, but he was very romantic. Me on the other hand – I wouldn’t let my guard down in order to give him my heart either. Continue reading at: https://multiplesclerosis.net/caregiver/unexpected-sadness/

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

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/

Give Me a Hand

Someone asked me recently if I had ever written about how we adapted to Lynn’s loss of function in his hands. I haven’t, but it’s a topic that might be helpful to some, so here goes.


Lynn’s loss of the use of his hands gradually progressed over time. I’m guessing the decline occurred over maybe 3-4 years with generalized weakness initially and now no strength to speak on either side.

 

He has almost no function in his left hand/arm and minimal in his right hand/arm. I think he started noticing a decrease in responsiveness about the time of his 2006 diagnosis. I say that because I came in one day to see him comparing the speed at which his fingers would move between the two hands.

 

It was that sight that made me realize that his weakness was not just in his legs. I demanded that he see a doctor because no longer could he insist it was just his sciatic nerve. As I told him, sciatic nerves do NOT affect the shoulder, arm, or hand movement, so it was more likely to be a problem in his brain or upper spinal cord. He agreed, and so came his first MRI and the diagnosis of MS.

 

Continue reading at https://multiplesclerosis.net/caregiver/give-me-a-hand/

I Just Keep Going and Going and Going

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/

Waiting for the Next Shoe to Drop

Caregiver feelings of depression, being overwhelmed and lonliness

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/

Tested By Fire

I was listening to a Bible commentary today and the commentator was talking about how God takes us through trials in life that prepare us for events yet to come. He described how precious metals are often put into fire for purifying so that the impurities are removed and the remaining metal is stronger and better able to withstand pressure and stress thereafter.  I can see how that has been the case in my life.
People often ask me how I do what I do.  How can I survive on five hours of sleep a night, hold down a very intense full-time position that often requires more than 40 hours a week to complete but yet be there night and day to take care of Lynn without losing my mind? Now, there are days when that last part might not be true; days when I think I am losing my mind, but for the most part, I’ve learned to take each day one minute at a time and just deal with whatever is the greatest need at that particular moment. I realize, I’ve learned to do this by being tested by fire throughout my life.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-tested-by-fire/

Struggles with Skin Care

I am obsessed with Lynn’s skin. Many years ago I worked as a home health nurse and I saw some terrible bed sores that started out small and then progressed to craters. Some of the patients had their entire backsides destroyed. Most of the breakdown, I expect, was due to inattention but some was also due to poor nutrition and just the disease process the person had.
With progressive MS, secondary or primary, the person often is in a wheelchair or in bed most of the time. In either situation, the person’s ability to shift their position is very limited or maybe non-existent.
continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-struggles-with-skin-care/

Stages of Loss: Acceptance

dispair

The final stage of experiencing loss or grief is acceptance. Some people never get there; some get there quickly. Most of the time people step into and out of acceptance at various times based on what is happening around them or new challenges they face associated with the loss.


For the caregiver, at least my personal experience, is that I moved into the acceptance stage long before my husband did. In fact, I’m not sure that he’s actually there yet. I know he has finally accepted the fact that he has MS but I’m not sure he has accepted the fact that his physical limitations are permanent. And maybe that’s a good thing. He continues to exercise muscles in anticipation that he may one day walk, or sit up independently, or be able to use his writing hand again. If he didn’t have this hope of being able to regain some function or of being able to not feel so miserable all the time, I’m not sure that he would not slump into a severe depression.


Continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-stages-of-loss-acceptance/

Finding the Will to Live

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 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.

Unwelcome Changes
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 disability. 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.

 Continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-finding-the-will-to-live/

Stages of Grief: Anger

When you first suspect your loved one has MS, you tend to find ways to deny it. Lynn kept saying his doctor had ruled it out. I kept saying, “Are you sure you’re telling him everything?” When he said, “Yes,” I would accept that as true because I wanted it to be true…denial.


Then, the day came when all the tests were back, and there was no denying the fact he had MS. By that point, he had significant symptoms he had denied, which I no longer could. By late into the evening hours, he was doubled over, unable to stand upright. He would fall easily; drop things. He was too exhausted to eat, and he loved to cook and eat. We would go to the beach for him to fish and he would find reasons not to go out but to stay in and rest. So, I knew well before the telephone call what the diagnosis would be.


I quickly moved from denial to anger at that point. I would not play his game anymore of pretending the elephant in the room wasn’t there. I was furious with his primary care doctor. Why hadn’t he been able to see what was going on before Lynn got so bad? He had a family history of MS for heaven’s sake. Was he a quack? I was ready to report him to the Board of Medicine for being incompetent. Then, I realized that the problem might not entirely be the doctor’s fault; it might be Lynn’s. Lynn was so sure he could NOT have MS or rather, he would refuse to consider the possibility, that I suspect he hid his symptoms. He has even acknowledged as much to me since. When I realized Lynn’s own refusal to face the possibility, I was angry at him. Being mad at Lynn brought about all sorts of conflicting emotions.

 

(1) I was supposed to be his support system while he adjusted to the news he had MS, BUT inside I was saying, “See. I told you so. You didn’t have to have gotten this bad but would you listen? No! Now, look at you.” Of course, I could not say that, but it’s what I was thinking.


(2) Its politically incorrect (not to mention futile) to be angry at someone for being sick. We, as a society, look in horror at someone mad at someone for being sick. How can they be so heartless? So, we don’t show the anger externally…but it’s there. This “disease” has now put the one who has it in a place of more considerable significance. No longer is the playing field even, but now all decisions will be made based on the impact of the disease. Being selfish by nature, that doesn’t always sit well with me. I resent when I can’t do what I want to do because of the “disease.” I’m not the one who is sick, but I’m the one who has to fix everything so that he can be as comfortable and as well as possible, even when my health might suffer.


(3) I became angry because I didn’t want my life to change. I liked being able to go into work, go out, sit and read, go to bed when I wanted, eat out, lots of things that were going to change. This emotion I struggle with a lot now. I have no “me” life, or at least it’s minimal. I go into work away from my caregiver responsibilities once a week. That’s my only time away from him other than a quick trip to the grocery store, pharmacy, or library. Nowhere else do I go…and I get tired of that. I see a movie advertisement, and I want to see it, but I can’t. I know that I have to wait till it comes out on DVD and then I’ll only see it if it’s something Lynn would also like to watch, and if we watch it, we do so as I feed him. Very rarely do I have time to sit and watch a movie (or anything for that matter) on TV. I used to LOVE to read. Now I feel guilty if I skim an article on the internet because I know that will put me behind in all the things I need to do. (I get around this one though by listening to books on tape from the library…a great escape!)


(4) I’m angry that I will not be able to retire to the “good life” we had planned. The house we had started to build sits idle with a completed foundation and likely will never become a home. All our spare cash goes to buying organic food, supplements, and equipment to meet his medical needs. We cannot travel because he cannot tolerate it. I can’t get an aide or assistant caregiver because they are too expensive full time so I must work and do his care on my own. If I were to retire (I’m almost 58) then we would not have enough money to continue to support his health as we do now and he would likely get worse. So I have concluded that I will have to work until I die or become disabled myself and can no longer go on.


(5) I’m angry about all the events I miss. I want to play with my grandson at the park, go to my parent’s home for family reunions, attend a conference at work, go to the Christmas cantata, attend church regularly, go places, do things; see people and I can’t. If an event is not at hour home, we don’t get to attend because Lynn cannot tolerate being out for very long and it’s challenging to get a caregiver that doesn’t cost anything when most of my “backup” caregivers are at these events themselves.


There is much about which I’m angry. I’m not upset with Lynn. I’m mad that he has MS. I’m angry at this monster has invaded our lives, and there is no getting rid of it short of death. I’m mad that as hard as we work to make him feel better than 6 ½ days out of 7, he feels terrible. I’m mad that he can’t help me. I’m angry that he can’t share in the joy of playing with our grandson. I’m furious that he can’t sing at church or play the drums or accompany himself with his guitar because he was SOOOO good at all these things.


I’m angry that I can’t fix this. I’m mad that I have to watch him suffer. I’m furious that he needs me so much and I’m angry that I can’t give more. I’m angry….


But not always. Just sometimes.
finish reading this article at http://multiplesclerosis.net/caregiver/caregiver-perspective-stages-of-grief-anger/

Independence Battles Protection

One of the greatest struggles I have found in being a caregiver is finding the happy compromise of my husband’s need for independence and control of his life versus my need to control his environment and keep him safe and healthy. Many times these two needs seem to be in direct conflict with each other. Here’s why I think.
Him:
Lynn was in his 40’s when he was diagnosed with MS. He was married, had a child, a successful career that was very physical, he played in a band, sang, and was a strong man of faith. MS came along, and suddenly, he was vulnerable. No longer did he have the stamina to work all day and go to band or choir practice at night. No longer could the go to trade shows and walk the miles he needed to make sure the displays were set up and workings as necessary (these displays were often the size of small houses). No longer could he travel and immediately to go work after landing. No longer could he drive because he could not determine when his leg would cooperate with pushing the gas or the break. In his mind, he was losing the man he was because let’s face it; we are what we do to a large extent. He was slowing losing his identity of himself, so he was trying to control anything he had the power to control. Thus came the conflict.
As Lynn’s muscle fatigue and spasticity would get worse, so would his balance and ability to walk any distance. Several times a day, he would fall. Sometimes he would get hurt; other times it was his pride only that got hurt, but he refused to use a cane or a walker. He would put his hand on the wall or furniture or lean on me, but he was NOT going to give in and use a cane! He refused to admit he needed help because in his mind if he gave in to the disease, then the condition had won.
Me:
When Lynn was diagnosed with MS, we were married (both for the second time), both of us had children, and I have a very time consuming and difficult job. My two children lived with us, so my life was hectic all the time caring for the kids, keeping up with the house, and managing my demanding job. Though Lynn and I had joint interests (we both were in choir and both very involved in church activities), much of the time we went our separate ways because we both were super independent. I also needed to be able to control my life so I could fit everything in that I needed to do. When I have control, I feel safe and confident.
Enter: MS.
I watched as my husband’s body began to decline. I could see his struggle to keep going when exhausted. I could see how, as the day progressed, his balance got worse. I understood that he felt that if he “gave in” to the disease, he would lose his fight against it. However, I was also very frustrated with him. I saw him fall and sometimes not be able to get up knowing that at any moment, he might fall and break a limb or hit his head or break his back. I KNEW he needed to use something for support. I KNEW he needed to make changes in his lifestyle to conserve energy…but, he refused. I became angry.
Both:
I was angry and frustrated. He was angry and frustrated. Both of us felt right in what we were doing, and both of us were, but we needed a compromise. Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-independence-battles-protection/

Dealing with Loss

During my nursing training, I was introduced to Dr. Elizabeth Kubler-Ross’ five stages of grief and loss related to helping patients and their families as they experienced dying and the loss of a loved one. Since that time, I’ve come to realize that those five stages of grief are not exclusive to death and dying. We experience the same emotions whenever there is a significant loss, including the loss of what “should” be.

I would suggest that most of us think of our life span in stages:
Stage 1 Preparation for Life:  Being born, the preschool years, completing K-12, college or career training
Stage 2 The Productive Years:  Finding a mate, starting a career, having a family, settling into a pattern of living.
Stage 3 The Plateau Years:  Instead of struggling up the hill to acquire and achieve more, you start to live out the life you have chosen with marginal ups and downs, some crisis, but you know what you have planned your life to be like and you’re living it.
Stage 4 The Declining Years: Children grown; maybe starting their own families. You are not still trying to build a career but are instead reaping the seeds you have sown so your push forward and upward is declining and now you’re settled and taking it easy. Probably having more aches and pains and the development of some chronic conditions has likely happened as age wears away at muscles, joints, energy, and memory.

That’s our expectation for how life should go. Then somewhere in your productive years, you start noticing that something is just not right with your spouse. He’s getting tired more often. He’s having more difficulty with activities. First, he goes to the doctor for this and then for that…he gets better but it comes back…and you start to wonder what’s happening. Then someone mentions Multiple Sclerosis. You dismiss that notion because it just can’t be true. He’s fine. He’s able to _____(fill in the blank depending on what you have seen of people before with MS). He’s young. He’s strong. He’s healthy….They are wrong. I won’t let it be true.

So you go look for “someone who knows what they are doing” and get referred to a neuro-someone—neurologist, neurosurgeon, neuro-ophthalmologist, or maybe a physical medicine/rehabilitation specialist.  Someone orders an MRI, a lumbar puncture is performed, and blood is drawn. Then you get the call, “your husband has MS,” and your blood turns to ice. No, it can’t be. They must be wrong. We have children to raise. I have a career. What if he can’t walk? How will I do this along (having already put in into the ‘disable’ category? What does this mean for us…for me?

And, just like that; you’re been thrown head first into the spiraling stages of grief and loss…only you’re not the one who has the condition causing the loss; you’re the one who is supposed to be understanding, supportive and their “rock” to hold onto while they go through their emotional crisis. But, when you’re married and your spouse has MS, he’s not the only one with MS; you have it too, by proxy. So the shock, disbelief, denial that happens with him also happens to you.
continue reading at: http://multiplesclerosis.net/caregiver/a-caregivers-perspective-dealing-with-loss/

Watching, Waiting, Being Strong

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 external collection device instead of an internal 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.

continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-watching-waiting-being-strong/

Giving the Gift of Receiving

“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/

Thankful for MS?

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.
Our Relationship
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/
 

Thankful to Be a Caregiver

Being a caregiver is difficult.  It’s a lot of hard work; it’s emotionally trying; it’s downright exhausting…but it is also very rewarding.  I try each day to come up with at least one thing that I have done or used or seen or thought about that I am thankful for and I highlight that on my Facebook timeline.  I admit there are times when it is difficult to find something but when I am struggling to come up with a topic, it also makes me realize just how much I have and how truly blessed I am. Today, I want to share with you why I’m thankful that I’m a caregiver.

  1. I am able to give back

Lynn has done so much for me since we have been married.  He is my #1 cheerleader. When he was able, he kept our house and cars in working order but that was just a task.  He was also the best chef that has ever cooked for me (I really miss that because I don’t like to cook). But more than anything, he was there to share with me in good times and bad times; in fun times and stressful. He gave totally and completely to me and now I can give back—not that I didn’t before, but now it is with focus.

  1. I am able to have some control of this situation

One of the most difficult emotions for me is feeling out of control.  I cope better when I feel like I have some control over what is happening. By being his caregiver, I have the ability to control how well he is cared for; I know what he needs, when he needs it, and he likes it done.  I can decide how to manage situations in the best interest of us both. I don’t have to call someone else and hope they are actually paying attention and really telling me the truth.  I don’t have to worry that he has been ignored or that he is hiding anything from me to spare my feeling—I KNOW what’s going on with him and that knowledge makes my life easier.

  1. I am able to share in the two minutes or less joyful moments

I have a very dry sense of humor and Lynn has a silly one.  Together, we can encounter a situation and between the two of us often one or the other has a slanted view of what’s happening, shares that perspective and we share a good laugh.  Our sense of humor allows us to face the challenges without taking them too seriously and helps to take the edge off the sharpness of our lives.  I enjoy those breaks from the seriousness of life and if I was not taking care of him, I would miss those.

  1. I have been able to share my caregiving experiences with others and been blessed by their feedback

continue reading at: http://multiplesclerosis.net/living-with-ms/thankful-caregiver/

One Minute He's Hot; the Next He's Cold

The thermostat in my house is currently registering at 77o ferneiheit.  With all the activity I’ve been involved in today, I’m now sitting here melting at my computer. Meanwhile Lynn alternates between being hot and cold but mainly stays cold.

Before the days of MS, Lynn’s body temperature ran hot. It could be the middle of winter and he would be outside in shorts and a T-shirt cooking on the grill.  We used to joke that one day he would spontaneously combust into flames because he just radiated heat.   That changed shortly after his diagnosis.  He gradually became less tolerant of heat.  Instead of setting the temperature indoors to a chilly 70, he would be satisfied to allow me to set it at a more comfortable level where it was no longer necessary for me to bundle in a blanket and wear gloves to watch TV.  Then he went from being warm to the touch to being cold.
Lynn developed a urinary tract infection that was mistreated for a couple of months resulting in his becoming very ill.  His body was not able to fight off the infection and he became weaker and weaker.  As his health declined, he became cold. At times it was necessary for me to wrap him in blankets, put fleece lined footwear on him, cover his hands in gloves, and heat up sandbags to lie over his hands and against his body.  He was freezing all the time.
Eventually, he had to be admitted to the hospital and while there, he aspirated and developed pneumonia.  It wasn’t caught at first, because he had no fever.  He was very lethargic; sleeping all the time. His blood pressure was low as was his pulse, and his body temperature simply did not register.  For almost two days the staff just attributed the temperature difficulties to equipment.  Finally, one of the care partners got a rectal thermometer because she felt something just was not right.  Rectally, his body temperature should have been a degree higher than orally; however, his body temperature still did not register.   When they finally were able to get a reading, his body temperature was 90rectally!  He was immediately put into the ICU and a heat blanket used for hours to gradually bring his body temperature back to normal.
To continue reading, click here: http://multiplesclerosis.net/living-with-ms/one-minute-hes-hot-next-hes-cold/

Take Care of Myself? LOL

I read an interesting article on the Caregiver Space this week which has led me to think a lot of taking care of myself and why I don’t.  The article was called “6 Reasons Why Caregivers Don’t Self-Care (the way you’re telling us to)”  http://www.thecaregiverspace.org/blog/6-reasons-caregivers-dont-self-care-way-youre-telling-us/   It got right to the heart of why; at least for that person.  Of course, some of her reasons were not the same as some of the reasons I have but many were very similar.
Here’s my version of her same theme:
1.  Take a walk – As I’ve mentioned before, I work from home and one day a week (sometimes more) I go into the office.  On those days I usually have a lot of meetings to attend.  My office is about eight blocks from where those meetings usually occur so I walk there although I could wait on a transportation service that comes around regularly. I walk though because I never get outside except to walk the short distance to my mail box.  I enjoy the outdoors but if I go outside for any length of time I have to set up the baby monitor and constantly clean up to go back into the house to address what Lynn needs.  Therefore, getting into a major “dirty” project is not something I do often. Furthermore, I cannot walk any distance from my house since the baby monitor does not project that far.  If I want to go anywhere for more than 30 minutes, the concern is that he will need to be cathed and will have an accident if I can’t get to him promptly.  Therefore, I do not go for walks.
2.  Use a treadmill – I actually have a very nice treadmill in one of our rooms that Lynn used before his balance got bad.   I had every intention to start using it again because I realized as I walked up the hill to those meetings I mentioned above, I become quite winded.  So, I had my stepson clear me a path to the treadmill…I have not gotten on it yet.  What I’ve realized is that to use the treadmill requires prep time and cool down time plus dedicated time to walk.  Timing the ability to do that requires coordination of activities with Lynn’s bladder and other needs.  Also, I work seven days a week so that I can keep up with my office work since I have so many interruptions during the week.  Therefore, if I’m not doing necessary house things like cooking and cleaning, or necessary Lynn things, I’m working and I truly do not have a spare 30 minutes in there anywhere.
3.  Soak a hot bath – When you have so many things to be done in a short amount of time, relaxing in a hot bath does not seem to be a priority.  For me, I jump in the shower, maybe take a few extra seconds to enjoy the heat on my muscles but then it’s back out.  I shower with the door to the bathroom open so I can hear him if he needs something right away.  My first stop (often before fully dry) is to check on him and often he’s calling for attention before I can do that.
4.  Hire help – yeah right.  Most people assume caregiver professional help is paid by insurance.  Wrong!  It’s not covered by insurance and it’s not cheap.  Plus you have to orient whomever comes over to his “routine” and you need to be vigilant that they are performing their duties as specified.  I would love to have paid help though but I already have so much debt related to buying the things he needs to feel better that I have no extra income.
5. Help from family and friends – we are blessed to have many kind and loving family and friends who help us out.  I truly don’t know what I would do without them.  One such angel just left my house after cutting the grass, weed-eating, and cleaning up leaves. All this he does without being asked.  He just shows up, does the work, and leaves without a word.  He didn’t even come into the house today because he might have shingles and didn’t want to expose us.  See what an angel he is? We have many such angels in our lives and their love and assistance helps me to manage all the chores and care needs I have that take me away from being available to Lynn.  I truly don’t know how those of you who do not have this support make it.
6. Get plenty of sleep – LOL.  How I wish that was possible.  On average, I get 5-6 hours a night–occasionally less (usually when I have to go into work); rarely more (maybe on a weekend if we don’t have someone coming over to help us with something).  I usually get to bed between 2-3 a.m.  I get up most days between 8 and 9; however, I usually am up twice during the night with caregiver duties so I’m always sleepy; always tired.  I survive on caffeine – either pill form or coffee.  I can’t always drink the amount of coffee I need due to stomach irritation but I’ve found caffeine pills help. I try to limit using them until I have to drive but I am honestly dangerous on the road much of the time without them.  I get so sleepy driving that I fear I’ll have an accident.  There are times every day around 4 pm. that I truly cannot keep my eyes open and they shut on their own.  If I’m driving home from work at that time, after 10 minutes on the road, I catch myself nodding off so I have to stop for coffee or something to eat if I don’t use the pills.  Yeah, I know I shouldn’t but when you weigh car accident vs. effects of caffeine over time; caffeine wins.
7.  Keep your weight under control – See #6.  I eat to stay awake; to give me the energy to go on.  I eat whatever I can eat cold and fast.  I don’t have time to cook for myself because my cooking time is devoted to making Lynn’s special meals. If I eat his stuff, I have to spend more time in the kitchen which means I have less time for my job and need to work more on the weekend to make up the time.  So I eat already prepared things.  Most are high calories unfortunately.  Okay, I admit, that’s also an excuse.  It’s one of the ways I pamper myself and I admit I use it as self-indulgence.  So…come on stretch pants.
Since I’ve started writing this blog, I’ve been interrupted three times and been pulled away at least 15-30 minutes each time.  That’s why I can’t do anything for myself.  That’s my real “why”.  Self-care takes times and time is not something a caregiver has.  So I do a little snacking, listen to an audiobook, and catch a 5 minute snooze to keep going and call that self-care, Donna style.