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Death

I'll Miss You, Patrick

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

Transition

I got a text message early this morning from my son saying that his fiance’s mother, Leslie, was beginning to transition toward her death.  I hadn’t heard dying referred to in that way before but it made a lot of sense as I thought about it.  There are specific changes that occur as our bodies begin to stop functioning and prepare us to die.  For those who are followers of Christ Jesus, it prepares them for accepting their heavenly bodies and begins the process of ashes to ashes; dust to dust.  Tonight at 10 p.m. she finished her transition and she has now gone home to her heavenly family.
Anticipating his call (admittedly, not quite this soon) that she had died, I’ve thought a lot about how we transition our lives.  For Leslie, she no longer suffers.  She is being welcomed by family and friends who have gone before her and by a heavenly Father who’s love surrounds her in warmth.  She has no more pain, no more worries, no more fear.  Her transition to the purest form of bless possible is now complete.
For her family, they transition to sadness mixed with some relief.  They are relieved her suffering was so brief (she was diagnosed with lung and bone cancer just two months ago) but sad because they cannot have her with them physically anymore.  There will be many adjustments for them to make since my son and his fiance lived with her and her husband.  They will each assume new roles and new responsibilities.  It will be tough on all of them and has been since she got sick but they have also grown and matured so much in the last few weeks.  I am so proud of both my son and his fiance in how they have worked together and handled this difficult time.
I also have thought about the transition that occurred in our lives when Lynn was diagnosed with MS; then again when he fell and was left helpless on the floor for several hours till I could come rescue him; and then again when he came home from the hospital so weak and de-conditioned that he could not sit up on his own or do any self-care. We transitioned from being a couple fully involved in our church to a couple who only attend church electronically now.  We used to help others and now we need others to help us.  He used to build and create with his hands and now he must do so with his mind.
Transition implies a gradual change from what was to what is.  After the transition, you’re left with a new reality.  It takes a lot of adjustment and sometimes it’s a struggle. Sometimes it’s a welcome change; other times we go kicking and screaming but in time, if we’re wise, we accept it and move on.  We take a deep breath and move forward taking it one step at a time without looking too far ahead.
Leslie has now transitioned into her new life and her family are transitioning into theirs without her.  I pray for comfort and peace for them all and am thankful for their faith and the knowledge that they are not alone.

There are Worse Things Than MS

I got a text message from my son this week asking us to pray for him, his fiance, and her family.  His fiance’s mother was recently diagnosed with stage IV lung cancer that had spread to her bones. She has had a month of radiation and a couple of weeks of chemotherapy but she is not tolerating the treatment well (she has lost 28 pounds in a month and was already very small).  The doctors are recommending that they stop treatment and consider hospice.  Her only child, my son’s fiance, has been holding up extremely well during all this taking on the burden of support and caregiver for her mother; but it finally got to her when she was asked about a “do not resuscitate” order. 
My son and this young woman have been dating for about six years so I’ve grown very fond of her and when he shared this information, it really hurt my heart to think of her upcoming loss and what her mother must also be considering.   Next weekend my step-son (Lynn’s biological son) is getting married.  I have to wonder whether my son and his fiance will now rush to get married while her mother can still participate in the wedding.  It would be a very simple affair I’m sure since time will not allow for planning but I can imagine the desire of the daughter to have her mother there and the desire of the mother to see her daughter married.  Suddenly plans change when your focus is narrowed in on time and what’s of utmost importance.
I’m fortunate that Lynn is currently doing well.  He’s stronger and better able to move than he was at this time last year which is a blessing; however, his ability to do things for himself is no better and may actually be a little more limited.  But still, he is doing better so I’m not focusing on avoiding readmission to the hospital or making plans for greater support.  However, I know that one day, that will occur…just not now.
Sometimes looking at the long road ahead and the expectation that as he needs more support, I’ll be getting older and less able physically to provide the care he needs it becomes overwhelming.  On the one hand I hope that he won’t linger in a state of total dependence on anyone while he lies in bed unable to move or do anything on his own.  I know he had rather die than end up like that so if that point occurs, I hope he dies quickly.  But I hope that is a very long way off because even though it takes so much out of me to care for him as I do, I had rather have him as he is now than not at all.  We still share so much and still find joy in our lives and I hope that the blessing of being together continues for a long time to come.
So when faced with the awareness of how fleeting life can be, I realize once again that there are much worse things than having MS.  What he has is a nuisance but he still has life and joy and hope and that makes MS just A thing not THE thing.

What happens when the caregiver gets sick?

I picked up a magazine as I was waiting for Lynn to have an MRI last week and read an article entitled, “What happens if the caregiver gets sick?”  It caught my eye because I’ve allowed that question to surface just on the edge of my consciousness several times but each time it comes, I rationalize that I’ll handle it when the time comes and move on.  I realized,  however, when I read that article that I really need to do something other than just assume it will all be okay. 
The article commented on two different scenarios–what if the caregiver got sick and what if she died.  I had thought about what if I got sick…Lynn’s care would be taken over by our family members, right?  But then I got to thinking, “what if I was rushed to the hospital and didn’t have time to get everything set up for them in advance?  What then?”
Wow, that’s scary to think about.  Lynn could not go in the ambulance. Who would come stay with him?  There is no one close by but there are people whom he could call to come.  But if something happened to me, emotionally he would fall apart and I’m not sure he would know what to do.  Let’s assume I was incapacitated and could not communicate for a while.  No one knows what medications to give him when. My daughter is a nurse and could cath him but what if he needed more supplies, plus she works full time so she could not stay with him? The children are vaguely familiar with Home Health, but not who to call. Thinking about all that, I realized I really need to develop a plan in writing that communicates the what, when, who, where and how to make sure someone could take over in case I’m not around.
Then what if I died? Lynn says, if I die, he will too, just from depression and giving up and I think that might just be true for him.  He would be so depressed, he would become non-functional. Therefore, no only would he need care but he would be in no shape to help anyone figure out what he needed.
I realize I need to get our wills updated.  We had them wills when the children were little but we need to update that now that they are grown.  Lynn would not be able to figure out who to contact related to life insurance and forget him probating a will…he would not be capable.  So, we need to find a lawyer to re-write the will who will also agree to probate the will and get our affairs settled. I also need to write out all our information for our family to use. 
This stuff is not fun to think about but it’s really as important as what I do for him every day.  I put it off because I think I will have time tomorrow, or next week, or next month and besides I’m healthy.  But what has health got to do with it? Just this month, I have known of two deaths of healthy people my age or younger from unexpected events.  It happens and we do not always have time to prepare.
So my New Year’s resolution (a little late but at least I’m thinking of it now) is to get our affairs in order.  As with all things, it will be up to me to do this and even though it’s one more thing to handle, it’s something I really need to do.  I dread it though.  It’s going to take a lot of time and thought and I had just rather avoid doing anything I can put off that is not essential.  But this is..essential, I mean, and I have to make myself do this both for my own peace of mind and for Lynn’s safety.  Ugh….