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Joy Comes in the Morning

Many of my blogs focus on the feelings of loss, anger, fatigue, and the negative side of caregiving because that is what we caregivers find to be the most difficult to manage. It’s much easier to cope with happiness and being well-rested. But today I want to talk about “acceptance,” the final stage of grief and loss. Acceptance is when you stop fighting the loss and have learned to accept life as it is…today.

Acceptance for me is not being happy that my spouse can no longer work in a public job or that I am glad that I have total control of our finances, how things get done, when they get done, or if they get done.  I am not happy that Lynn cannot walk, that he cannot feed himself, or dress himself, or tolerate almost any activity more than a few hours. I am not happy about these things but neither am I angry or depressed about them…at least not today. You see, the thing about grief and loss is that you never really finish going through the stages. Any new change in my own status or Lynn’s can take me right back to where I was initially.  It does not last as long because I know better how to cope with that stage but I still have to deal with the emotions. Going backward for a short time does not mean I have failed at dealing with that stage previously either; it just means there is some new situation or concern that I have to deal with today.

Continue reading this article on: http://multiplesclerosis.net/caregiver/caregiver-perspective-joy-comes-in-the-morning/

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/

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/

Living the Loss

I attended a memorial service recently at my church.  It was the first time I had attended a church “service” there in three years.  The last time I was there, I was rehearsing for our Christmas drama and had one of the lead roles.  We were in the final weeks before the production and I had to drop out because Lynn was admitted to the hospital.  He was in ICU for a month and then readmitted two more times during the next six months.  Once he entered the hospital, his strength and functionality were significantly compromised due to inactivity and the complications of his condition so initially we could not return to church due to his health.  About a year later, he was strong enough to return but we discovered his power chair was too big to fit the elevator so he couldn’t go unless he used a manual wheelchair.  He isn’t strong enough to sit upright that long without the support of his power chair so we are currently waiting for renovations underway at church that will include a new elevator and handicap bathroom so we can come back.  Church members even lovingly call it “Lynn’s elevator.”

Prior to his MS progressing to this stage, Lynn sang in the choir, played hand bells, played drums for the praise band, provided some carpenter assistance in addition to attending services and Sunday school every week. I sang in the choir, played hand bells, lead a drama team, worked with a support group, and helped in the nursery while also attending services and Sunday school every week.  We were both very involved and much of our social interaction and support came from people at church.  Not being able to attend church left a big hole in our lives.  Many still send cards and they have supported us in so many ways, both financially and in service; that our lives continue to be touched and blessed by their generosity and compassion.  However, the type of fellowship we used to have is missing in our lives.

continued at:  http://multiplesclerosis.net/living-with-ms/living-the-loss/

Grieving over things lost

I thought I was beyond grieving about how things had changed. …or maybe we are never completely finished grieving over loss.  It seems to come back when you’re not expecting it which in many ways makes it harder to handle.
Here’s what brought it on this week.  Every morning as I’m preparing Lynn’s morning medications and nutritional supplements, he listens to his Bible lesson for the morning and then he plays a few songs off YouTube. He loves music.  He is a very talented musician and has a beautiful tenor voice.  Besides the fact that he can no longer play his guitars or hold drum sticks, he also can no longer sing.  His diaphragm muscles are too weak to sustain the slow release of oxygen needed to sing without having too many “breaks” in the lyrics. 
One of his daily exercises is to sing a little trying to strengthen those muscles.  I usually am not in the room when he sings and since he can’t sing very loudly (you need breath to project) I usually don’t hear him.  This week, however, I came into the room as he was singing along with Elton John’s, “I Guess that’s Why They Call it the Blues.”  I like the song as well, so I came into the room singing along.  As I was unhooking him from the peddlar so he could come into the kitchen to eat, we were singing along together.  I could just hear the sound of his former voice.  (Even as I write this, I have tears in my eyes and feel like crying.)  He could not sing a full verse and he would have to “cut out” at the highest notes, but the voice was still there. 
I miss that voice.
I think it was Lynn’s musical talents that made me fall in love with him in the first place.  I’m a sucker for a ballad singer…especially one who plays guitar. Plus he used to write me songs for special occasions that were beautiful.  He even wrote one for me that he sang at our wedding. (everyone say ahhhh…..)  For me, that was my most romantic part of our marriage and relationship. 
That’s pretty much gone now and I miss it.
I miss those times when we used to sing together with old songs on the radio. I miss when he used to surprise me with songs for special occasions.  I miss being in choir with him and practicing our parts as we drove somewhere.  I miss hearing his solos at church.  His voice could touch your soul it was so sweet.  I really miss it and I’m grieving that loss today.
I hope that it will return one day but I don’t expect it to.  During one of his hospitalizations, I was told his loss of lung capacity was significant and would likely decline further over time.  He’s much better now than he was but I also know that anything that affects his lungs could create a crisis for him.  Practicing singing will help make that more difficult but it won’t prevent it.
I guess the other part I miss is the intimacy that his singing gave us.  Our hearts connected during those times.  We can no longer be physically intimate and though we are closer now than we ever have been, the relationship is different when the husband has to have all his care provided by his wife.  The man wants so much to care for his wife, to protect her, to do for her and make her life better.  It’s the essence of being the husband.  When the wife becomes the protector, the provider, the one who cares for and does for both of them, it changes that relationship.  It’s still a good relationship but it’s different.  I miss my protector and I miss the romance.
I don’t know why I’m feeling this way all of a sudden.  I just got caught off guard by his singing…nothing else….but then I guess that is how grief is.  You think you’re okay and it sneaks up on you even as time goes by.  It’s just one more aspect of MS (or any life changing illness or injury) that we all live with…saying goodbye to what was and accepting what is.

Weathering the storm

Hurricane Irene has moved on now and we fared pretty well.  We lost electricity at 2 pm on Saturday and we still don’t have it back here at 5:30 on Sunday.  Our yard is a mess and we’ve lost everything in our refrigerator but I think the freezer food for the most part is okay.  We have a generator running a small air conditioning unit and a friend brought us another one for the freezer which also allowed me to hook up a TV and the computer.


Lynn is feeling really bad though.  Low pressure systems really hurt him.  He feels like he’s been run over by a truck.  He’s also emotionally hurting.  He’s been on the verge of tears all day because I’m having to do everything to recover from the hurricane.  He’s so frustrated because he can’t help or do it himself.  It has been difficult trying to help him and manage everything in the aftermath plus, I couldn’t sleep much last night.


It’s hard seeing him so upset over his loss of ability to help out. It hurts as a man to have your wife do everything for you and then also handle emergencies as well.  He feels so worthless at times and that’s so hard to see and so hard to help him overcome because the reality is, he can’t do those things anymore and he is limited on how he can help.  I try to help him keep his “manhood” by letting him help as much as possible but I often get frustrated because I just don’t know what I’m doing and it’s not easy for him to explain it to me at times.  I’m pretty dense with mechanical things although I do eventually “get it.”


The power company has us on priority but who knows when we will be fixed since there are probably hundreds also on priority with medical problems.  My daughter has come over to get the gas can to get more fuel for use tonight. Sure hope nothing in the freezer has gone bad since we plan to eat that!


If anyone’s looking for something to do, I know a yard that needs to be cleaned up!