Leap Of Faith

201304_FreefallFly_PinSquare_smallIt is getting more and more difficult to share our story. Not because I don’t want to, but putting into words the decline, the heartache for our family, the frustrations that are commonplace and the dissipating conversations makes it real. Not that all of this hasn’t been real, but there were times excuses could be made or his fallacies seemed more aggravating and annoying than a sign of his disease and the difficulties that lie ahead.

I put the subtitle of this blog “Confessions of an Alzheimer’s Caregiver” for a specific reason. The main being this would all be MY point of view and MY emotions and take on this journey. Along the way I have tried to paint a picture of Jim and the kids and our friends, but it has been important to retain privacy for everyone involved except myself. When I started, Jim was very supportive, mainly because he trusted me. I take that trust and hold on to it dearly. Each time I write I try to envision what the old Jim would say, would think, would feel. I try to ensure I don’t misuse the trust he placed in me.

The line between what to publish and what not to publish seems to be less and less clear. I struggle to know the right answer. So, sometimes I remain silent. But his disease does not remain silent. It speaks to me each day, loud and clear.

Jim is declining. Not rapidly, but not slowly. His speech at times is not comprehensible. His movements are those of a much older person. He wears the same underwear, clothes, socks and pajamas until I tell him he has worn those same items for two days straight. Most of the time he goes and changes. Sometimes he comes back in the same outfit and tells me he did change. Most of the time a belt loop has been missed. Sometimes two loops. He eats bowls of cereal over and over again and says he hasn’t had any. He stopped walking the dog for a while unless someone reminded him but lately has picked it back up. He still goes and plays tennis, but needs reminders. He has stopped jogging almost altogether. He barely watches TV, but at times will watch a game with the family. He cannot put a puzzle together. Long gone are the crossword puzzles he devoured and the books he enjoyed. He has great difficulty hanging a coat or shirt. At times he struggles with his seatbelt. He still eats whatever we set in front of him. He gains absolutely no weight. He is obsessed with things and then forgets them completely. He has little understanding of time. He can still vacuum. He no longer paces around our downstairs area; he now just stands in one place for great lengths of time. Sometimes in the dark. He rinses dishes and thinks he has washed them. He puts the trash in the recycle bin and the recycling in the trash bin. He brings in the overflowing recycling container before the truck has come by. He feeds the dog food to the cats and the cat food to the dog. Sometimes I catch him with dog food in his hand, putting a few pieces on the floor at a time for the dog instead of filling the cup and putting it in the bowl. He puts things in very strange places. He can no longer read a menu and independently order a meal. He usually remembers to wash his hands. He will drink 5 glasses of tea before his food comes. He will wash his hair with lotion or conditioner. He will go to bed without telling anyone goodnight. He will laugh and throw out a joke at anytime. He still looks good when he has shaven and gotten some rest. He still craves being with his family.

So, this is where we are. He is in full- blown Younger Onset Alzheimer’s Disease form. Not Mild Cognitive Impairment.

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Over the past several months, there has been a huge transition in our family. Jim has continued to battle gallantly, but still becoming more and more dependent. As he has needed me (or someone) more and more, I have become suffocated and started having my own problems. My work was giving me more and more responsibility at the same time I was needed more and more at home. Both kids were needing me. Jim was needing me. My work was needing me. Something had to give or else I was going to end up either in the hospital or a mental ward. With much thought, I decided to step down from my job. This was a difficult decision because we need the money and I need the outside connection. I am often asked how we make it financially. I don’t have a magic answer. I save when I can and I spend when I have to. I don’t pay for his daycare yet, just respite care. I will write more about this later. After I quite, it took a while to really let go. My job was ingrained in me. But the one thing I realized was how little time I was spending with the kids, especially Brad. Our bond was suffering and what was important became more and more crystal clear: our children. I have not regretted my decision one bit. My stress level was cut in half. My ability to parent both kids has re-emerged. I can work on The Garner Foundation and volunteer at the kids’ schools. I can help Jim more and find ways to become an advocate I wasn’t able to before.

But slowly, I have been sucked back into a darkness. As Jim has declined, my will and my own strength has tumbled. I don’t have the outlet of work. I don’t have something forcing me up and out into the world. I don’t have to take a shower, do my hair and makeup or for that matter, get out of bed unless I really want to. This is not good. I have been suffering, as I suspected I would, when I decided to quite. I need outside stimulation. I cannot sit home all day with no purpose or agenda.

As fate would have it, Home Instead Senior Care asked me to help them with some upcoming Alzheimer’s programs. They asked me to write for them. They asked me to be part of their team, without the stress I was under. They agreed to pay me to do basically what I have been doing and what I am passionate about and what I will more than willingly get out of bed to do! This has been a lifesaver for me. The foundation has been a lifesaver for me. I wish I could find something to save Jim, but we all know I can’t. All I can do is keep doing the best I can, when I can. It is amazing how you really can learn to let the little things go. Especially when you don’t have a choice.

Sometimes, when you take a leap of faith, a net catches you and throws you higher than the cliff you jumped from.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (9)

9 Responses to “Leap Of Faith”

  1. Sandy says:

    Karen, thank you for continuing to share your story, as difficult as it is. I commend you for stepping down from your ‘paid’ job that brought you so much stress and congrats on your new adventure; when one door closes another one always opens. I attended a care conference for my mom today and although I know she is declining, to actually hear the people who are taking care of her say she is in the late stages of ALZ is heartbreaking, knowing there is absolutely nothing that I or any doctor can do to change it. I wish you and your family much peace.

  2. Diane Chadwick says:

    i can so understand about what to write….my mom has taken a huge downward spiral and I have not written about it in my blog. Would she want people to know how she has gotten….I don’t think she would want people to know but like you said your blog and mine are written from a caregiver prospective.

  3. Jeremy Smith says:

    please, when you see him wearing the same clothes, using conditioner for shampoo, not bathing, etc., be the caregiver that he so desperately needs. Lay his clothes out for him each day, help him with the shampoo. If you were sick, would you want him to let you walk around dirty? Don’t be mad at him because of this condition. He didn’t ask for this disease. Compassion. He can’t be independent anymore. Thank you for what you are doing, but Jim’s days are limited, your’s aren’t. Compassion.

  4. Judie says:

    Karen, you are so brave! Thank you for sharing your journey with Jim through this horrid disease. You and your family are in my prayers! I have walked thru this disease with my precious Mom.

  5. Terrie says:

    I can understand completely what you are going through. My husband did the same things. All I can say is be strong and let the little things go. Enjoy the time together and with family. I wish I knew then what I know now. There is so much I would have done different. I lost my husband a year and a half ago at the age of 61. He was diagnosed with dementia at the age of 54. You and your family are in my thoughts and prayers.

  6. Karen your blog brought me to tears, tears I haven’t shed since Joe left us. For some reason I can’t cry. This is not normal. my husband died and no tears. I cried knowing exactly what you are going through every day. Thank you for your blog and my tears. I need to cry to feel normal.

  7. Janet says:

    It is a huge leap of faith to quit your job and I’m so glad you were offered such meaningful work. Living one day at a time — keeping the focus on today — can be a huge help in terms of maintaining sanity. Anytime my thoughts turn to the past or I start projecting on what may or may not happen in the future my mood sinks. A very big hug. Thank you so much for continuing to write. God bless you and your family

  8. Ann says:

    ((((Karen))))…. I’m so glad you no longer have job-related stress to deal with – that in itself is exhausting. I think of you often and truly can’t imagine how you’ve been able to manage everything. You’re amazing. What a blessing that you can now work for Home Instead without the stress of your previous job. And, what a blessing to be able to spend more time with the kids and with Jim. Please take care of yourself and find outlets just for you when you can. Sending love and prayers.

  9. Chris says:

    Karen-Hang in there. I am glad to hear that you have realized your plate was too full and were able to re-align some priorities. While I’m still employed FT outside of the home, it was a difficult decision to please my husband in an assisted living center. God was sending all kinds of signs to me. When I finally accepted that, I found that my husband was being well cared for, my son had his mother back and we could all enjoy being a family for the limited time that we have. So, we pick Ron up and go out to dinner or lunch as a family without all of the worries and drama. It’s enjoyable and peaceful. Ron and I now have a regular Friday night date night. Old movies are played at his home each Friday night. So, we go to an early dinner and then to a movie and then I can tuck him in and head for home. So often we try to postpone tough decisions and stress over them. But once made and a new routine is developed, things get better. I am so happy that he is still able to be at home and so glad that you were able to find a solution that fit your family. Nothing is permanent. So, if this does not work, you can always rethink your decision and choose again-for the benefit of all. Prayers for you and your family!

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