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Depression

anger turned inward

Feeling Alone or Maybe Just Left Out

Depression is a common mood disorder in the elderly.

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


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


Continue reading at

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

Lack of Sleep. The Root of All Evil?

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


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

I miss those days.

Continue reading at

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

Confessions of a Stressed-Out Caregiver

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


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


continue reading at

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

Stages of Loss: Acceptance

Overcome by despair over a dropped bag of groceries, feelings of depression can make minor accidents seem major.

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/

Frustrations of Dealing with Limitations

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

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

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

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

The Many Faces of Care

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 healthcare 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.
Spiritual Care
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 essential 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/

Caregiving From a Different Perspective

Each of us filters information through our previous life experiences. Through those filters, we evaluate comments made and inferences perceived and eventually make conclusions based on those filters. We also tell ourselves stories about what we see and hear based on those filters and it’s through those stories that our emotions are generated.
That being said, each of us will read a blog and get something different out of it. We will pass judgment on the writer and the content based on where we are in life and what we believe to be true at that moment. As I have been writing my columns, I have had a growing concern that what I share may be misinterpreted or may even cause pain to readers who take in what I share from the point of view of someone who has MS. When I share my “story,” it’s from the point of view of the person who cares for the person with MS. Essentially, I have MS by association. I do not have the muscle weakness, the spasticity, the loss of functioning, but I have equal impact as my husband’s full timecaregiver. I do not for a minute think I have it worse than he does. I could walk away from this situation (though I choose not to), but he cannot. My image of myself, my career choices, my plans for the future are not made based on my own limitations but every choice I make, I make with his limitations in mind.
I pledged to Lynn before God and our families that I would love and care for him in sickness and in health. I meant it. I never considered leaving when his condition deteriorated to the point it is now. I want to take care of him and I put his needs first in everything I do. I feel it is a privilege to be able to give myself over to the care of my husband whom I know would do the same if he could for me. However, that being said, this life is not easy. It’s incredibly difficult. I, alone, am responsible for ALL his needs. He only has use of his mind and his left hand and arm (and that’s before lunch each day; by lunch time, he can’t use them anymore either). I have people who come in and help me for a few hours during the day so I can continue to work full time from home. However, they do not provide for any of his physical care other than to feed him. Don’t get me wrong. What they do for him saves me a lot of time and allows me to focus on work during normal work hours rather than late at night; however, if there is a problem, I still take care of the fix.
Though, I have pledged to care for Lynn and do so willingly, I get frustrated. I get angry. I get depressed and overwhelmed when he feels bad and demands more attention that I have the energy to give.  When he asks me to adjust his inflatable cushion so that his bottom doesn’t hurt, he expects me to know, I guess by instinct, whether to add more air or take more away. He can’t tell me what to do. He looks to me to figure out everything he needs and while I understand that after he’s sit for a long time on a cushion till his bottom is either numb or painful and he can’t “feel” it anymore, it’s frustrating to be called away from cooking or from participating in a conference call while working so that I can provide a fix that I don’t know exactly how to provide. I am very adept now at cathing him while discussing highly sensitive issues during a conference call and balancing the phone with my head while I use my hands to do a sterile insertion. I often have food cooking on the stove, while I’m scratching an itch somewhere on his body and formalizing a response to an issue to give when I can get back to my email. I get angry when he sits there watching TV while I administer to his care, I finish up to leave with my arms full of supplies, and he says, “Oh, before you go I need…” I get depressed when I ache all over because I’m coming down with something, I’ve had 4 ½ hours of sleep, and still have several jobs to do and all I want to do is lie down and rest but I can’t. I get depressed when everyone from work gets to go to conferences or gets “atta boys” for what they do and I don’t because I have to stay home, out of sight/out of mind, and I feel unappreciated. I admit, I do a lot of “poor pitiful me” self-talk before I even realize what I’m doing which is unhealthy.
continue reading at: http://multiplesclerosis.net/living-with-ms/different-perspective-caregiving/

I've Felt Worse

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/

Put Guilt Back in the Box

There are a multitude of emotions that play into being a caregiver or being the one with the chronic disease that needs the care. Which emotion takes front stage on any given day is affected by how you feel, how the other person feels, how much sleep you got the night before and what else happened that day.  One of the emotions that I have to battle more often than most is guilt. I think I struggle with it the most because I can’t seem to be what I think I should be and I can’t always do what I think I should be able to do. In my own mind, I know that when I say I will do something, I absolutely know that I can do it—I am quite capable; I have the knowledge, the skills and the ability to do what I say I can do.  Then something happens to prevent me from getting to it or doing it as well as I had wanted to do, and the guilt sets in.

I am extremely fortunate that I have a job that can be done from almost anywhere as long as I have a phone, a computer, and access to the internet.  Since I have all three at home, my manager allows me to telework.  I come on site at least once a week usually to attend meetings or to provide training.  I often attend meetings through teleconferencing but sometimes I just need to see a person’s reaction to be able to pick up on how a conversation is really going. On the days I go in, I often set up back to back meetings so I waste no time when I’m there.  To go onsite, it takes a minimum of four hours to get ready to go.  Unfortunately, our morning routine does not always go as planned.  Not to gross anyone out but sometimes the bathroom process doesn’t go as well as we would hope and it puts me way behind schedule.  Other times, I get a text from whoever was supposed to come that day saying they woke up with a runny nose or cough.  We try not to expose Lynn to any infectious or viral conditions because it sets him back so far so I scramble to find a replacement and often, that’s impossible so I have to stay home.  I HATE WHEN THAT HAPPENS.  I feel so guilty when I have to reschedule appointments or even when I have to say that I’ll need to talk to them by phone because I know they would prefer to talk face to face.  Though I still manage (usually) to get the work done, it’s not how I wanted to do it or when I needed to do it so I feel guilty and very critical of myself.
Now, flip that coin.  When I have to cancel going into work because Lynn’s body refuses to do what we need it to do or we can’t get someone to stay with him so he doesn’t have to be alone (note:  he can stay alone for maybe an hour or even two at most but no longer than that because he can’t get food, drink, or empty the urinary drainage bag for himself), Lynn feels so guilty.  He knows that I am jeopardizing my reputation for his sake.  Knowing that if he could just do those things for himself, I would not be under the pressure I live under every day makes him very depressed at times.  I need to be able to share my frustrations with him but I hesitate to do so because I know that guilt will certainly rear its ugly head.    It doesn’t matter that he has no control over what happened and that he absolutely can’t do these necessary things for himself so it’s really not his “fault” but to his way of thinking, it’s entirely his fault because if not for him…..  He is also afraid that one day, I’ll be so overwhelmed with all the responsibility and so tired of the struggles, that I’ll just walk away; so on the one hand he feels guilty and on the other hand he feels afraid. Yuck.
Read more at: http://multiplesclerosis.net/blog/put-guilt-back-box/

Loss of Intimacy?

When my role as a caregiver became more demanding, I found myself acting more as a caregiver and less as a wife.  In the early stages of MS, Lynn still worked, drove himself around, completed projects, and helped me with things I needed.  He shared in the responsibilities of the house and we shared our lives as a couple. While he needed some assistance, particularly at night when he was most tired, he was independent in his own care and was still functioning as a husband, making decisions about our future, making sure maintenance of our home and vehicles occurred, taking measures to ensure our safety and securing our resources.
Then came the day he was home alone, fell, and could not get up.  He was stranded for almost three hours lying next to a heat register, getting overheated, alone and totally helpless.  It changed him. After that, he was afraid to be alone.  He didn’t want me to leave the house and was even reluctant to let me leave if someone else was with him.  He began to rely on me for everything.  He was afraid to try walking with his walker anymore unless I was right there.  He became very depressed and struggled with the realization that he was becoming or had become DISABLED.  It was at that point that our roles changed.  I became his caregiver and he became my “charge.”
Within a few months after he fell, his condition deteriorated to the point he was hospitalized and was in and out of the ICU during three separate hospitalizations.  By that point, I was responsible for everything–all decisions; his protector; his liaison with the outside world; his life-extension. When we left the hospital after the first admission, we left with him as my patient and only an essence of my spouse.
That was 2 1/2 years ago. He’s much better now, physically and mentally, but the aftereffects of that time remain.  He has use of only one arm and hand which becomes essentially no use of limbs by night fall.  I position his body for him so that I can dress him; I manually move him from bed to wheelchair; I position his arms for comfort and his legs/feet go into his peddler so when his spasticity gets uncomfortable, the movement can relieve that.  He does not have the strength of movement even when he does move his limbs for effective action.  He cannot even scratch an itch or wipe his eye of sweat.   That being the case, when the person you love cannot left their arms to hug you or tighten their muscles to embrace you; how do you maintain intimacy?
We are fortunate in that Lynn’s mind is still very active and engaged.  Though we can have no physical relationship, we do have a spiritual and interpersonal relationship.  We are still able to enjoy a television show or good movie together.   We discuss the news.  We share in the joy of parenthood and now grand-parenthood.  We can still send each other special smiles and looks and we still strive to support and encourage one another.  We still have companionship and for us, that has allowed us to continue as a couple.
I have talked to others whose spouse has withdrawn from being engaged with the events around them or who can no longer remember the here-and-now but instead lives in the yesterdays of their minds.  For them, the person they loved no longer exists in the presence other than as a responsibility.  They still love their spouse but the person who “was” no longer “is.” Therefore, they carry on in a one-sided relationship becoming the caregiver who functions not as a partner, but as the one responsible for everything that needs to be. That type of relationship can be very lonely. Though someone else is present in the same home there is no companionship; no sharing; no refuge from life’s challenges by being able to unburden their load with someone else.  They now have to receive their satisfaction in the relationship though the knowledge that they are making their spouse’s life better, their life expectancy longer, their potential for greater recovery an option.
I am very thankful that I am not at that point yet.  I dread the day that may or may not come when Lynn doesn’t recognize me or where we live.  I know if that day occurs, the burden of caregiving will seem greater unless I prepare emotionally and mentally for what lies ahead.  It’s possible Lynn will not develop memory or cognition problems but many MS patients eventually do.  However, for now, I’ll feel blessed that he “has all his oars in the water,”   and I send up prayers for my friends who are not as fortunate.

Depression

Have you seen that commercial that asks, “Where do you hurt when you have depression?” and the answer is, “Everywhere.”?  That came on while I was helping do something this week for Lynn and suddenly I realized that maybe I have “misdiagnosed” his symptoms. 
Lynn started on Rebif about two months ago.  Over the past month, he has become more and more tired the day after his shot but even between those times, he feels bad.  It’s not aches and pains but more of a heaviness–the weight of not feeling good.  He has also gotten very irritable, more impatient than usual and, though he controls it well, he gets angry very easily. 
I was talking to his primary care doctor about something else and she asked how he was doing with his new medications.  She was concerned because one of the major side effects of Rebif is suicidal thoughts.  I assured her he was not suicidal but that he was having some emotional effects and might need intervention for them but I would call back if I decided that was the case.
Later I talked to Lynn about it and told him that I thought that was what was going on with him.  He uses an antidepressant already due to struggling with depression associated with just having MS but I think he now needs more.  He thought about it and agreed, but he said to tell the doctor he was not so much suicidal but homicidal (don’t worry, he was joking about that.  He would never actually try to hurt me or anyone who came here.)  What is actually happening though is that his frustration level rises quickly and he throws off weights that he is using to exercise or he shoves things roughly out of his way or his language gets rather colorful–all of which can be signs of depression.
What is depression actually? 
It’s basically a mood disorder that can vary in degrees of severity. 

  • There can be situational depression–you get depressed because you just lost your job and finances are already tight.  That type of depression usually gets better as the situation gets better and once a resolution to the issue is found, the depression goes away. 
  • Then there are depressions caused by a chemical imbalance–the body doesn’t secrete enough of a particular chemical to keep your system in balance and depression occurs.  Antidepressant medications often work to restore the appropriate levels for the person with this type of depression. 
  • Depression can also be due to medications.  Sometimes medications will cause a chemical imbalance and changing the medication will help relieve the symptoms.
  • Then there are the medical disorders that predispose you to depression; like MS.  A significant number of MS patients develop depression either due to the lack of stimulation by the nerves to the organs that control the chemicals noted above or due to the impact of the disease on the person’s life.

When a person has depression, they lose interest in a lot of things.  When I first noticed that Lynn had depression, it was because he had a lot of “hopeless” talk and he lost interest in eating.  He didn’t want to go anywhere or see anybody.  His personality changed.  He used to love to see people but when depression started, he just wanted to stay in his room and didn’t care if anyone came to see him or not; not even his son whom he is very close to or his Mom and sister. After a few weeks of that not changing, I told his neurologist he was depressed and needed medication and he referred him to a psychiatrist.
Lynn didn’t really want to see a psychiatrist because he didn’t want to “sit around and talk about my feelings.”  I told him that wasn’t really the purpose of the appointment.  Psychiatrists  (MD) often treat with medications and psychotherapy techniques while licensed clinical social workers (LCSW) or licensed clinical counselors (LCC) often do those “talking about feelings” therapies.  A psychologist, another type of therapist, uses tests to help determine what is going on with someone and then refers them to either a LCSW/LCC or to an MD depending on the suggested diagnosis from the testing.
Going to the right type of therapist is very important in getting the help you need.  If you possibly have a chemical imbalance or will need medications, the psychologist, LCSW, or LCC, cannot do that so you should get an appointment with a psychiatrist.  If you want group therapy or the typical 50 minute therapy session where you talk about how you feel and what you can do about it, then you could do either the MD or the LCSW/LCC.
Whichever one you think you might need, go see them.  I was depressed when I went through my divorce from my first husband.  I went to a LCSW which really helped. I did need some medication so the LCSW contacted my primary care doctor to discuss what was needed and he prescribed something. So you can see that you don’t always have to have a psychiatrist but like in all fields, psychiatry has a lot of new medications coming out all the time.  I recommend that you talk to someone who knows which medications do what and what will work best in conjunction with your medical condition and any other medications you may be using.  Once you get the right mix, you’ll feel a lot better.  Then the world will start to look sunny again and you can see hope returning.
If you think you or your family member might be depressed, mention it to your doctor.  Depression is truly a miserable feeling and just like the commercial says,  when you have depression, you really do hurt everywhere and everyone around you is affected as well. Don’t wait…Get the help you need.

The Secret Life of a Caregiver

 I follow the writings of another caregiver, Patrick, (http://caregivinglyyours.blogspot.com) who has been caring for his wife who has MS for 22 years.  Patrick recently discovered he had cancer and one of the comments he made in his blog struck home with me.  Patrick described how he hid the truth of his illness from his wife so that she would not become upset over the news. When I read that, I wanted to reach out and give him a hug and say, “I know.”
Who, as a caregiver, has not been in the position of putting on a smile to hide the true emotions they are feeling?  I have been very fortunate (so far) that I have not had any serious illness to hide, but I have learned that I must be careful what I share. I remember coming home from a medical appointment where my healthcare provider warned me that if I didn’t get some sleep, I was likely to become very ill…and then who would care for Lynn?  More than a concern about my own health, I started taking measures to address the warning so that I would be around to care for him. 
I admit though, I told Lynn what the doctor said.  He initially took it in and encouraged me to follow the doctor’s advise.  Then I started noticing that depression was setting in for him.  He would be on the verge of tears and he was constantly asking me how I was feeling.  I realized that while I felt responsible for him, he felt guilty for the potential harm he was causing me and he was having a very difficult time dealing with it.
In the spirit of full disclosure, I will share that I am sometimes evil.  Sometimes I am so tired of being tired and I’m hurting all over from muscle strain and the burden of doing everything, and I just want to escape…then he calls, “hey, sweetie!” to scratch an itch for the 10th time in an hour or to adjust his clothing…AGAIN… or something else he needs when I’m in the middle of trying to get something done that REALLY needs to be done.  I admit in that moment, I want to make him feel guilty so that he stops needing me so much.  I tell myself that he doesn’t really need that much attention or that he just wants my company so he’s making up reasons to call me, or he’s just being plan unreasonable and impatient…. I’m angry and resentful of the situation so I say something that I think will make him feel sorry for me.  I hope you all will not think too badly of me but at those times, I’m evil and mean.  I don’t like myself after that and when I see I stuck home with what I said to him and he’s feeling guilty then I feel awful and try to make it up to him…but I admit, it happens…especially at night when I’m tired.  It’s embarrassing and I feel guilty that I’m so petty but it’s true unfortunately.
I’ve found that I have many secrets as a caregiver.  I keep my fears a secret (when will he get worse, what do I do about a caregiver, how can I manage repairs, etc.)  I keep my desires secret (I want to escape, I don’t want our life to be this hard, I don’t want to move one day)  I keep concerns about my health a secret (are those just stress palpitations? do I need surgery on my thumb joints?) I keep my “bad” self secret–my grouchiness, my frustrations, my resentment at times.  
I keep all these things secret because I don’t want to hurt Lynn.  Some of it he knows by observation and experience anyway (especially my grouchy nature)  and sometimes I share just enough to prepare him for what may come but not so much as to drive him into a depression.  It’s tough being the strong one though.  Sometimes you just want someone else to carry the burden awhile.  That’s why I wanted to give Patrick a hug and say, “I know.” 
To Patrick:
I’m praying for you, Patrick and wish you the very best. I’m so glad the surgery was successful and you dodged the bullet, but right now, it’s time for someone else to care for the caregiver.  God Bless.