Trapped Alive

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Sometimes when I write this blog, I have to censor myself. I don’t do it to protect myself, but to protect my kids, my family, or Jim. Sometimes it is because the reality of this disease is so harsh, so burdensome, so outlandishly crazy with the fact that more isn’t being done to help that I have to abstain from writing what I really want. There is a novel being written in my mind that would completely shock some and others would be like, “Yeah, I could have written that years ago.”

I am going to attempt to walk a fine line and discuss where I am and where Jim is. Actually a small facet of those.

I feel trapped. Trapped like a caged animal desperate for release. Trapped in a world I have little control in. Slammed against brick walls and thrown into a dark abyss of pain, selfishness and emotional upheavals that are unbridled and uncontrollable. I am stuck with Jim. I am stuck taking care of him and worse; I am stuck watching him become someone I don’t know. I am MARRIED to a person that can no longer use a hotel key card or who doesn’t understand that you can’t put the Costco cart inside of the World Market store. I bare witness to the mumblings and the utter disregard for clean clothes. I know it is politically incorrect to say these things, but I know I am not alone. I know that there are others who have these same thoughts. It is ok. It has taken me a long time to accept this. It’s ok because I don’t ACT on the thought of feeling trapped and suffocated. I am staying. I am here, doing the best I can. This is me, being me. Even when the kids were younger, I would sometimes be waiting for Jim at the door, ready to hand over the reins so I could have an hour of “me time.” And I love being a Mom and love being with them. But I have always needed my space.

When the kids were just babies I would read article after article on how to be the perfect Mom. You have seen these in parenting magazines….How to Raise a Giving Child or What Every Mom Should Do To Prevent Tantrums. I could never live up to the examples that were set in print. Now that I am a caregiver to my husband, I sometimes fall into that same old habit of trying to be the perfect care provider all over again. But this time, I am a little more mature (just a little) and I am being forced into a corner that will either allow me to excel or set my life on an uncontrollable  spiral. But this time, there are clear repercussions if I fail. My children will suffer at my shortcomings and so will Jim. If I don’t do this “right” I could lose the most precious and wonderful things in my life: my children.  I am choosing to excel. In order to do this, I must find a way to accept my faults. To accept my faults, I must be honest. And that is where this revelation comes in.

One of the things that Jim and I did well was accept each other. Sure we each had our little things we bitched and complained about, but for the most part, he let me be me and I did the same for him. Part of my appeal to Jim was the fact I was so independent. I loved being with him, but I liked my space. And so did he. It worked well. We did stuff together and we did stuff apart. He played sports, I hung with friends. We worked around the house together and watched movies together and then we would travel separately for work and it all came together nicely. Now, not so much. He is home. All. The. Time. I am told when I am not with him, he constantly asks where I am, when I will be back, looks out the windows and front door and paces. I haven’t seen it first hand, but I know this is typical behavior for an Alzheimer’s patient. But it isn’t typical for me. Or for Jim. I don’t do well with feeling suffocated. I need my time. To do whatever. It doesn’t even have to be anything major. Just going to the store by myself or walking a trail by myself or catching up with a friend makes a huge impact on my mindset. Over the holidays, I was basically attached to Jim at the hip and without me realizing it, I was subconsciously revolting. It is who I am. How can I change this? It isn’t cool to say you want some space but I NEED my space. I need my time to do whatever I want.

I have so little time left with Jim, shouldn’t I want to be with him 24/7? Shouldn’t I want to take him in; his smile, his laugh, his eyes, his hands, his everything? Shouldn’t I want to be there for every joke he still cracks and to guide him through his day?

No. I can’t. It isn’t part of my personality and even more to the point: I DON’T WANT TO. It is too hard. I hate seeing him this way and he still has a long way to go. And this my friends is the catch 22. I want to be with Jim, but I don’t want to be with Jim. There is a constant ebb and flow of emotions….. the reality is simple: I want to be with the real Jim and right now I am settling for an impostor. He has such a great attitude and still tries so hard and gives so much of himself….but he isn’t himself and sometimes it is too much for me to see him in this state, however amazingly good it is for someone at this stage of the game. It is such a far cry from the sturdy, autonomous, handsome man I have lived with since 1996. It cuts me to the core and sometimes I am just unable to simply be ok with the  man I am currently living with.

So, here I am. Being honest. I am not going anywhere. I am staying put, but in my mind, I am sailing the islands of the Caribbean or sitting on a dock overlooking a mountainous lake while reading a book or taking in the Northern Lights (on my bucket list) or snuggling with the man who always made me feel like a million bucks until he couldn’t anymore. And now it is up to me to make sense of it all just to stay sane enough to carry on.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

19 Responses to “Trapped Alive”

  1. Jorge Cordero says:

    Karen.

    As Jim’s long-time friend, I appreciate your sincerity. If it’s not for your account, how are people who are making decisions supposed to frame their opinions and their positions on something they know little about?

    I totally understand your trepidation about writing how you feel without looking over your proverbial shoulder before you post your thoughts on your blog. If you don’t, how are we going to learn about the pain, the burdens, the frustrations, the difficult times, the angst of making every day decisions? You are not only the voice of a care giver, but you are Jim’s voice. Jim would be the first one to say…”hell yeah, tell them exactly how difficult it is to be a care giver to someone with this disease.”

    I’ve said it before and I will say it again…Jim could not have a better voice, care-taker, and advocate. Love you guys.

  2. Chris says:

    It’s all about grieving the man you lost and accepting the man you have. Some refer to it as acceptance. Others refer to it a grace. I refer to it as life.
    I have been where you are. I’d like to say it gets better, but it all depends on your perspective.
    I lost my husband long ago, but I regularly visit a man who looks like him, has a great smile, speaks few words. We do a few things together each week. We share a meal or watch an old movie or walk miles & miles in the corridors of his new home.
    It’s much better than when he was home and I was constantly on guard and watching and worrying. Now, I know he is safe, being fed and making new and very different friends.
    As I have told many people, “This was not the retirement we had planned, but I am so glad we planned for retirement.” We’ve saved our entire life to take care of him. It is truly raining and I feel blessed that we had this retirement/emergency funds set aside. This disease most definitely qualifies as an emergency.
    Hang in there. We’re all in this together…

  3. Sandy says:

    Karen thank you for being so honest and open with your feelings. I’ve had very similar thoughts and feelings about my mom going through this horrible disease. You are not alone. In my eyes you are such a strong woman!

  4. Tom says:

    Karen I know how you feel as I am also there now. My wife of 30 yrs just turned 66, and this life is so far from the retirement we had planned. Her doctor told me on Tuesday she is just entering the advanced and final stage of this dreaded disease. She is next to me now, but she is rarely really here. She has a great disposition, smile & laughs a lot, but anything she says more than a few words makes no sense. I want to be with her to keep her safe, but I also want to be free. It is a constant struggle to make sense of my feelings, and make sure I am doing what is best for both of us. While I have taken her with me almost everywhere, the places we can now go are very limited and it is much easier leaving her at home with a friend or paid caregiver. We have been on this journey for 7.5 yrs, but the past month has been extremely difficult. For her 66th birthday, I decided to do a tribute for her by putting 5 photo albums themed around the centerpieces of her life – family, friends,children, crafts and outdoor activities. Over 250 pictures posted into 5 facebook albums. I went through every album, picture box and electronic file we had, as I was looking for some pics I never found. It was an emotionally trying experience, but I would much rather celebrate the living than what we normally do. The response from friends & family was very rewarding, but it showed me and everyone how far Linda has fallen, and how much of our normal life is a thing of the past. It was just something I felt I had to do as it may well be her last birthday and holiday season. I just want to let you know that your feelings are within many of us, and it’s not clear what we can do with them. Like you, I am not going anywhere, just doing what needs to be done. God Bless you Karen as you are so helpful for all of us on this path

  5. Lisa Bricker says:

    Karen, I see myself in your shoes day in and day out. I am 57 and it took 7 years to finally diagnose my husband after two job losses. It’s so important that you keep writing and speaking your voice. That energy has to go somewhere! I write too and I understand the torn loyalty about speaking our feelings.
    Namaste’ my friend

  6. Lisa says:

    I have been struggling with the me time for a while. I always enjoyed time alone in the house. I used to take vacation days to have it. Now my husband is home all the time. I find myself getting annoyed at him if he gets up early on the weekends. Even if he’s just upstairs, it’s the only time I have to myself to try to collect my thoughts. This just sucks for us all!!

  7. LaQuita Herrin says:

    Wow! You wrote the words I think, feel, live daily. Tears slide down my face. My husband was diagnosed 2005 EOAD, 2008 FTD was added. He just turned 50 in August.
    I Know exactly how you feel.
    Thank you for sharing honestly!

  8. Pamela Adams says:

    Thank you Karen! You have put into words, my exact feelings. I struggle with the guilt. I feel as if I’m letting my husband down, some days, I don’t even want him touching me, I feel so lost. Your writing gives me hope. You speak for us too! Thank you, I’m in tears, tears of release! GOD bless you!!! <3

  9. Karen Joe is further along than Jim is. One visit he was lucid enough that we had a conversation. I put that in my pocket of memories. The same day he sang a song I’ve never heard him sing. I think the song “Red Sails in thee Sunset” was one he sang when he was about ten at the Kiddies Matinée. I visited Joe yesterday, he kissed my hand over and over and he wanted to sit in my lap. I had him on my lap for awhile. Was he back to the age of sitting in his mother’s lap? He fell asleep and we eased him down on the couch. I sat with him another two hours before I came home. Last night in the bed I wouldn’t let myself think about the visit. I didn’t want to cry so some way I blocked out the visit. I wonder when this will end. Joe is tired and so am I.

  10. Wendy Sweigert says:

    I became my husband’s 24/7 caregiver over six months ago when his dementia ramped up after his cancer diagnosis. There are times when I go for DAYS not going to the second floor of our house, or leave the house for that matter to go to the store. We have hospice in place, but I have yet to really utilize them. I feel trapped as well but know our time is really short as his cancer has spread and is not curable. I feel guilty when I want to be anywhere but here. I feel guilty when I think that others have it better…so many emotions on a daily basis, all while trying to help our daughters navigate these waters knowing they are losing the first man they ever loved.

  11. Loretta says:

    Karen you must get your alone time! If you do not have family or friends who will stay with Jim for one day a week or a few hours several days a week then you must hire someone. You have to take care of yourself or you will be of no use to your husband or kids! Don’t try to take care of everyone in your family by yourself. Ask for help!!!

  12. Barb says:

    Thank you for your honesty. Without experiencing it, people cannot comprehend the nightmare that this disease is! Please keep posting, and don’t over sensor yourself. Also, It is not wrong to want or need time for yourself! Everyone needs some degree of space and the opportunity to reset; it is only after meeting that need can you be fully present with Jim and the kids.

  13. Janet says:

    Your feelings are completely normal and understandable. But you’re at the point where you need help, at least a few hours per day.

  14. Linda says:

    Hi Karen
    Oh my, you have verbalized the feelings and thoughts that have consumed me. It is amazing how we go on and on when we think we can no longer do this. I awoke this morning to my husband tapping me. I looked and saw a naked man with poop all over his legs. The bathroom was unbelievable…can I get through this next stage? I just do not know. You are in my thoughts and prayers, Karen.
    Linda

  15. Connie says:

    Everyone tells you what you need to do but here are a couple ways to get some help. Contact hospice to evaluate Jim. The gave me an hour a day to take a walk while they bathes, shaves and gave Glenn breakfast. Support of a Chaplain, social workers do nurse was also provided. They could also find a volunteer who would come and sit and chat or watch a movie.i could then go to the store or run an errand. Through the social worker and friends , I found a CNA i paid $12 an hour. I used her for 4 hours while I worked part time at night at a furniture store that allowed me to get out and be with other people. I earned slightly less than what I paid her.but the outlet was good for me. Start small but this helped me when I was feeling so trapped.

  16. Ann says:

    Karen, thank you a million times over for your honestly. I dealt with this disease with my mom, but I can relate to so much of what you talk about – in a slightly different sense, obviously. I still have so much guilt – especially the early years – for not having more patience, for dreading visits because I just couldn’t bear to see my uber-independent mom morph into a child before my eyes. Now, I would do anything for those moments, but through your words, I know I’m not the only one – and I’m not an awful person. I did my best every blasted step of the way. To go through this with your life partner, especially at such a young age, with the kids so young, I can’t even imagine. You are amazing, Karen. And your courage to be so honest will help more people than you can imagine. Thank you for that.

  17. Ruth says:

    Karen, Thank you so much for your honesty. I have wanted to write my feeling for a long time but didn’t have the courage to put it on paper. My husband is 60 now, diagnosed 4 years ago with EOAD. He has a genetic form, carrying two forms of APOe4/e4 one from each parent. His mom has it now but she is 86 years old and expected. His father died of Cancer 2 1/2 years ago, no sign of dementia. My husbands name is also Jim and we own our own business. It was his brilliant ideas and the blessing of God that has put us in a good place business wise, but when he was diagnosed I had to take his name off of everything. It has been a constant grieving process of seeing him lose more and more things that he loved. He has progressed slowly this year and it always gets me when he has a really bad day. I act surprised by it. I get mad like all of a sudden he should remember. My kids don’t understand what it’s like and they think I am mean. I work side by side with him every moment of every day. Both at work and at home. Not many breaks for me. He wants to do all kinds of things but I don’t have the energy to do them with him. He wants to travel but I am afraid I will lose him in an airport. We are in a clinical trial but I cannot say that things are better at all, definitely some progression. Short term memory is really short. He can’t pick off a menu anymore, only reads articles on his phone. Not sure what I will do when it gets to needing additional care. Thanks again for sharing your heart! We did the Alzheimer’s walk this year for the first time as a family and we raised $12,500.00!!

  18. Maureen says:

    A 12-step program may help you. It has given me hope when initially I felt hopeless. I look at life differently. I live one day at a time sometimes minutes at a time but always with grace and dignity. Gratitude and acceptance have changed my world. I adore my husband. He is the love of my lifetime. And he knows it. I can’t imagine how the feelings you have can’t negatively affect your children and especially Jim. And what you are doing to yourself is heartbreaking. I am praying for all of you. xoxoxo Maureen

  19. Sandy says:

    Maybe you should consider taking us up on our offer to have him in Connecticut for a few days.

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