I appreciate what I have…but Miss what I don’t!

i-am-thankful-for-my-struggleThere is a little boy who is dying tonight. He is two years old and he has cancer. I don’t know his family, but I still hate what their family has endured and what they will continue to endure long after their precious son has left them. I see updates on Facebook from the family. We have mutual friends and as I have watched their fight and witnessed from afar their heartache, I have pondered life and the unfairness that happens in our universe. I see Jim, struggling to keep his dignity and to stay a dad as long as he can. And I read stories about parents losing their children. If I could somehow make it so that I had to endure the frustrations and constant sorrow I am faced with each day to save a child, I would. But as much as I wish my suffering and Jim’s suffering could abate the pain felt in another home, I know it won’t. I know I will continue to watch as Jim fights his own battle the best he can. I am only a witness to the things I recognize as more heinous than watching Jim succumb to the plaques and tangles multiplying in his brain in another family…. Losing a child would be one of them. I am so, so grateful for Frances and Brad and somehow, dealing with the pending death (albeit not tonight or tomorrow) of my spouse, I cannot help but be so grateful for having them with us and in seemingly good health. It isn’t lost on me that I may be suffering a loss, but it could be worse. To the parents who are losing a child or who have lost a child, I am so sorry. I wish I could somehow take the suffering our family must endure and replace yours. I suppose it would make all that our family is going through worth it….if we could find some good in our pain by easing the burdens others face. I sometimes wish Jim would just die. Now. I don’t really want him to die, but as I have mentioned several times, I don’t want to be part of what is coming. It is this unbelievable awful thought process: I don’t want Jim to die, but I don’t want him to continue to decline in cognitive abilities and don’t want his children to watch him suffer in a way that they can’t possibly change or help in any way. I know that Jim doesn’t want to become the person he is becoming. It can cause so much internal stress thinking about it all, the best way to handle it can be to shut down. But dementia patients need you there for them for years, so you are not allowed to shut down for long. You must stay in the present, to help them and in my case, help our children. The irony cannot be missed: my partner, my go-to person is the patient. The stress and the heartache and the gut wrenching thoughts would be eased under normal circumstances because Jim and I would discuss them and he would be my sounding board and my help. I have come to realize with much clarity that even marriages in troubled times have two partners. Partners that can communicate. Partners who can help with whatever needs helping; dishes, yardwork, decisions on finances, disciplining the kids, vacation ideas, what to do with free time, what to watch on TV, what to do about life situations that happen with friends and family, co-workers, cable companies, etc. I have opportunity to sit back and watch relationships now with a different thought process and a much different appreciation. Even my friends who complain about their spouses (and as they do they usually apologize to me and tell me they shouldn’t be complaining to me of all people) have to recognize the simple pleasure of having a partner who is there, in the moment and who can carry on a REAL conversation and even if they are driving you crazy with the point of view they have, at least they have a point of view. At least they can listen and comprehend you are upset or need to vent or have ideas that they are helping you mold into realism.

The big question is would I suddenly appreciate Jim if he miraculously went back to the man he was 10 years ago? Would I find the fact he was able to be a husband and a father in such a magnificent way enough? Would I be content and appreciative? I certainly like to think so.

Since I am reminded daily there is no cure and there are no treatments that can correct his decline, it is a moot point. But I think it is reason enough to pause and appreciate where he is now and how much we have to be thankful for. Starting with two amazing kids who continue to bless us with love and lots of great memories. And a man who doesn’t give up and who tries his best, each and every day.

Frances and Brad in Alaska, July 2014.

Frances and Brad in Alaska, July 2014.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

7 Responses to “I appreciate what I have…but Miss what I don’t!”

  1. Jeri says:

    As I so often do on a restless night like this one….. I picked up my phone and checked to see if there was a new post from you Karen. And as I read it-once again I can’t help but be amazed that so many times we seem to be thinking and feeling the exact same way. It has been a tough few months for my family. Dwight has had two hospital visits……the last one 2 weeks ago…..and is now in a nursing home in their Alzheimers unit. I know it’s where he has to be, but that doesn’t make the fact that he’s there any easier to take. And you are sooo right……..we (meaning EVERYONE) living a life touched by Alzheimers, must try our best to live in the moment. I remember when I went to check out the “place”. I liked the “feel” of it and the fact that there were so many staff members to take care of the needs of their residents and was thankful there was a place just a very short distance from our house that I can walk to it if I want. Still yet, the “place” didn’t seem as perfect after he got there. Yes….there are many sweet, helpful and friendly staff there and yes it’s still very close to home……BUT IT ISNT HOME! That’s what I rangle with in my head constantly. I found myself longing for “what was” just a few months ago. But I Know that I HAVE to …….. like you said….. appreciate where Dwight is right at this moment……. because I know (sadly) that sooner rather than later I’ll be wishing I had these moments back too.

  2. Sandy says:

    Losing a spouse to Alzheimer’s is an ongoing grieving process. You are always grieving the new losses. I was just thinking about that this morning as I got up in an empty bed. Oh I too have such a different perspective on marriage now, how I miss those little things in our marriage so much. Yet I do cling to the little pieces/glimpses of the old Curt that we see…..it’s all so hard I know.

  3. Lee Ann says:

    They say that we come to this earth to learn something or teach something. And I’d have to say both you and Jim are learning and teaching a major lesson. One thing you are learning is that you are the “go to” person for yourself. You are stronger than you ever knew.

    After working for many years in long term care and hospice, I’ve found that you just cannot get through life without some happiness and some pain. Sometimes horrible pain. And yet these elderly people are able to smile and move on. some women had lost a husband and two brothers in the war, their bodies never came home. some women have lost many children. There are some very sad things that people live through. And its sad. But people pick up and go on anyway.

    I think they are on the edge of finding either a cure or a vaccine against AD. I can almost feel it coming around the corner. It may not help Jim. But it will certainly help the next generations. That Malaysia plane that was never found awhile back had a graduate student in a research study in her college she wanted to develop a vaccine for AD. She died and her possible cure died with her. But its close. I felt this same way when they started saying AIDS is a chronic illness, not a fatal illness anymore.

    Its sad that your kids have to go through this as a young age. But I am willing to bet that one of them will become a researcher for something like this, or develop major compassion for others through being sensitive to this. I know many doctors that went in to their specialties because they lived through something similar in their childhood. One doctor I know had a leg amputated at 10, he uses two cans and one leg now and he is in charge of a huge rehab hospital center with PT for people with difficulties ambulating. We learn what we live through. I bet your children will be better humans because of this. ((hugs))

  4. Kathy says:

    Karen, your comments are so thought provoking. My husband has been in an Alzheimer’s Unit for 7 months. I miss him. I have grown kids who are busy with their own lives. I miss Carlton. I miss talking, laughing, having a meal with him. I, too, have wished that he would just die. Not for me, but for him. I hate the humiliation that he has to endure with his caretakers having to see to his personal needs. He would hate it! I want to go on vacation, out to dinner, celebrate birthdays and Christmas with HIM!! But now there is no Him! He is existing, not living. I know when the time does come, I will miss him so. I am thankful that I can see him every day, that he has loving kind caregivers that don’t mind taking care of everything. We are actually in limbo, all of us who are fighting this terrible disease. You and everyone who is living with this hellacious disease are the only ones who really understand the emotional roller coaster that keeps going faster and faster! Bless us all!!!

  5. Andrea says:

    Thanks for writing our thoughts out loud. I was feeling guilty about some things that I think sometimes. I am constantly asking God to help me with my thought process through this. It is comforting to know I am not alone in thinking some of the things I do.

  6. Maureen d. Connolly says:

    Wow!!! What an amazing post! Filled with gratitude, compassion, acceptance, sadness, but also hope, even under such difficult circumstances. Thank you for sharing your strength and observation of living life on life’s terms.
    xoxoxo Maureen

  7. Joan says:

    And I’m thankful that my husband is pleasant and tries hard.Yet I am with someone who can’t process a thought,this is the new norm,so everyday must be appreciated because there are darker days ahead.

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