Epiphany Time (Again)

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It’s been a rough week or so. This shouldn’t be much of a surprise because, well, my husband has Alzheimer’s Disease. I am fully aware of what is happening in his brain. I am fully aware that much worse is on the way. Yet, unbelievably, I am shocked when he is unable to recall what I just said or he no longer understands he is drying the vehicle instead of washing it, with a polo shirt and not a rag. At what point will I throw my hands up and just accept this fate? At what point will I just give in?

I started to realize a while back, with an unbelievable amount of guilt attached for good measure, that I am feeling trapped. Like a woman forced to endure a loveless, pre-determined marriage arranged by others. There is nothing lost on me at how this sounds. I understand that Jim has no control over his actions or his lack of ability to communicate or contribute to our relationship.  So, not only do I feel like I am in a situation where I have no say or have no way out, I then feel like a complete and utter ass for being such an un-understanding and un-accepting, un-docile wife. Yet, I recently had an epiphany: MAYBE JIM FEELS TRAPPED TOO. Huh? He did say something last year about wanting a divorce. It had come completely out of the blue while we were setting the table for dinner. He said he wanted one so he could move into his own apartment and not be a burden to the kids and me. At the time, I felt it was so noble and just like him to be thinking of us and to be searching for a way to make it easier for us. Now I am finally thinking a little more about his point of view…He does have to put up with ME and my abrasive reminders to change the clothes he has worn for two days or fix his belt that is not through all the loops and to shave and to tie his shoes or to eat lunch. Poor Jim is constantly being told what to do and now how to do it. I wouldn’t like that life very much. I don’t think Jim would (does) either. But (there is always a “but”) if I don’t tell him what to do, he walks aimlessly around the house searching for something he never seems to find. He has told me over and over that he wants me to tell him so he can do something. He tries to write everything down, but lately he can’t make out his own handwriting half the time.

I am not cut out for this. I am not patient and understanding. I speak my mind and move on. If my heart breaks; I want to cry, scream, rebel and get it out of my system. Then move on. If someone hurts me or misrepresents themselves or turns out not to be the cool person I thought they were, I have learned to cut my losses and….MOVE ON. But I can’t move on. I must stay in each moment and repeat myself over and over. I must steel myself for recurring heartbreak and frustrations. Then I must pretend that I don’t mind. I have never been good at pretending. I am supposed to accept this fate and somehow make lemonade out of lemons so our children have somewhat decent childhoods. All the while, let’s not forget none of this is really about me; it is about a wonderful, hardworking, intelligent, talented man who has been dealt the crummiest hand of all.

Now, epiphany number two: I am a horrible Mom. Not all the time. Just part of the time. For two reasons. The first relates to the previous paragraph. What fabulous Mom berates her children’s father? Enough said. The second reason is one that deals with time, money, stress and lack of “taking the bull by the horns”.  I noticed last week (because my 13 year old daughter, who I now realize takes on waaaay more responsibility than any 13 year old girl has the right to deal with, was away) that I was leaving my 10 year old son with an adult that could not react if necessary in an emergency; could not remember if they had eaten breakfast or lunch and didn’t really understand the concept of fixing something semi healthy; could not remember where our son was when he left with a friend; could not take charge enough to keep said son focused on the few things he was tasked to do while I was at work. Instead, he did exactly what any normal 10 year old little boy would do: played games, kept his pajamas on and watched videos and sports on tv. My head almost exploded when I arrived home from work to see that my list of things was not done by Brad, Jim had no clue where he was and couldn’t recall what had taken place that day and it became crystal clear to me: I now knew that Jim was not a responsible enough person to watch a 10 year old and if I left them alone again it was now officially on me if something happened. Talk about hitting a brick wall.

And my Mom wonders why I love beer so much?

So, this week Brad is in a camp, Frances is back and I am trying to make sure she just focuses on getting her own stuff done;  keeping an eye on Jim and the dog a little bit. A little bit. There is a very fine line that I am trying to draw around her to make sure she doesn’t get burdened with too much, yet contributes appropriately enough to make life a little easier on me and to help her understand the responsibilities that lie ahead for us all. She and I were walking after going for a jog together  last night and she was telling me how nice it was to get away and get a break from “all of this.” I could certainly understand her sentiments. But it was sickening to me that my first born was searching for ways out too. What terrific parent has a child that likes getting a break from home life? Isn’t that what TV movies are made of?

None of this is fair. I am stuck. The kids are stuck and worst of all, Jim is stuck. None of us have a way out. We only have each other. And with each other, we will make it through, but it won’t be as pretty, as happy or as idealistic as any of us would like or have wished for.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (20)

20 Responses to “Epiphany Time (Again)”

  1. Diane Chadwick says:

    I feel your pain…..my sister and I had a dose of what you are going through last year when my dad was in the hospital and we had to take care of mom who has AD. I think the stress put my dad in the hospital…..he hide the bad and the ugly from us the best he could, There was not much good in what he was going through, After a few months in the hospital and rehab dad was able to go to assisted living. Mom went with him because my sister and I were exhausted and we had not been taking care of her for nearly 2 years like he had. After several months in assisted living dad was able to come home and mom moved into the memory care unit. It was hard and it is expensive but dad could not do it alone and he knew it. We could help but it would require 24/7 care and he did not want us to interrupt our family and lives. It is the best option for our family. Not everyone can afford it and it is a struggle for dad but so far we are able to provide the care. It sounds as if Jim really needs to be in some type daily care…..adult care, assisted living or memory care. I shed many tears when we set up mom to go to memory care. I felt like a failure as a daughter but it does come to a time when it has to be done. Please be sure you have checked out all options for financing….this disease is expensive and can wipe out all of your financial savings. I continue to pray for you and the family. God Bless You!

  2. Lisa says:

    First, it’s hard to think you are doing the right thing for your kids in the summer while you work. There’s a lot a guilt for a working mom. That is without the extra responsibilites you have for Jim and because Jim is no longer able to help as much. It’s hard to always be the one that has to adjust and compromise. Then you feel selfish because you feel that way. I completely understand what you are going through. Beer is good :)

  3. Jill says:

    I’ve written to you before so I don’t want to come of as harsh. Since Jim is getting worse, have you considered in-home hospice care? I only used them a short while but sounds like it might be time. Please don’t think ill of me, I’m am still recovering and mom passed 3/22/2012.

  4. Connie Howard says:

    My 58 year old husband with Early Onset now has hospice come in 5 days a week to shower/brush teeth/shave and dress him. He wears depends and they provide that and some of his medicine. The hospice nurse comes in weekly to check on him. I have a chaplain who has been faithful to check on us and pray for us. Glenn cannot perform Daily Living Skills so that is how we got help. They also will provide respite care in a nursing facility for 5 days in the first 90 days of care and every 60 days thereafter. Basically Glenn’s medicare pays. I am basically homebound with Glenn and appreciate the one hour each day to walk for 40 minutes and jump in the ocean. This is my oxygen. I do have caregiviers come in when I work 4 hours four days a week at my own expense. For my sanity and well being and am slowly increasing that. Finding day care and repsite care is very hard. Glenn knows what is going on and resists going to memory care assisted living facilities. He is not ready for a nursing home which hospice uses for respite so we can’t take advantage of that service. Went to Bahamas on a friends boat and spent 3 of the 5 days dealing with issues on the phone at international rates and the nursing facility sent him to the hospital to Baker Act him. I understand his resistance to check out any other place. Spoke to an elder care atty and could get some help if he went to a nursing facility and we set up a qualified trust. Problem is he is not ready for that yet. Why can’t hopsice arrange respite in memory care facilities? Other option is to apply for medicaied wavier that 37,000 other people are on the waitlst that is 6 months to a year to get and that might be $1500 a month. Most care at Glenn’s stage is $4000-6000 a month. Frustrated at the lack of help available to someone who is not a veteran and under 62 years of age. I am hanging in there with you Karen.

    • Andrea Spencer says:

      Connie Howard, if you are reading this would you please contact me by email. I would like to ask you a few questions about your husband’s care. My husband is 48 with Early Onset, in stages similar to Jim’s per Karen’s blog. My email is mimiluv44@gmail.com. Thanks :)

  5. Kimberly Smith says:

    I know the “trapped” feeling all too well. As my husband’s Alzheimer’s progresses, those feelings get worse, not only for me, but my boys as well. At times I feel so lonely. Missing all we’ve lost and dreading what’s to come. My mother is moving in with us next Monday. She has Frontotemporal dementia and I will be her full time caregiver as well. What are the chances at the age of 45, you have a husband and mother, who both have dementia? There are times I would give anything to just fly away and escape from all the stress and sadness. But, like you said, we are stuck. All of us. Hang in there. Hugs, k. By the way, beer IS good, lol.

  6. Sherri Williams says:

    I personally prefer wine and tell myself that I and doing my health/heart some good as well as relieving stress. I too feel trapped and wish I could escape. Our children are grown with the last one in college. I work and there is not enough money to pay the bills and my Bob doesn’t qualify for disability because he set the record for naming the most animals and 3/4 of them were different fish and he has fished since he was 13! So of course he can name fish! Our daughter doesn’t understand why I don’t just walk away. Our “friends” think I am a bad wife that can’t provide for her disabled husband and have offered to him to go live with them and they will take care of him. I told to go if that’s what he wanted. Guess what he is still here with me. I don’t qualify for food stamps, or medicaid and he is not a veteran. So while you are stuck and things are bad , you and I are not alone. Maybe we should form a club! We could all take a bus trip to the beach! walk on the shore. Drink fancy tropical drinks and pretend we live in a different world! Even the gs money for a day trip to the beach would be good( I am in N.C. just off I-95). I say my prayers and ask God to give me the guidance I need to get thru and the grace for a good night’s sleep each night. Tonight I will ask the same for you too. As the song says” What doesn’t kill you makes you stronger!” so we are on our way to being the strongest women in the world!!! Hang tough ladies!

  7. Tamie says:

    The “trapped” feeling is second only to numbness. As my husband’s Early Onset Alzheimer’s progresses, life moves along not as hoped or dreamed, but instead on auto pilot in anticipation of the next emotional explosion – his, sometimes mine. We are both equally entitled as are you Karen. It is not fair that as young wives we have landed in this place called dementia, not fair that our husbands are captives of this horrid disease and our children in predicaments they should not even be aware of, much less learn to cope with. Thank you for once again sharing your brutally honest feelings – you help me validate my own. Thoughts and prayers for your family and mine.

  8. Opal Tipton says:

    I feel your pain Karen…..I’m in the very exact same spot with my husband. And what I so love about your posts are, they say exactly how we all feel. But you have that natural ability to put it in words. All I can say is, hang on. I know it’s hard. Believe me! Been there, done it all. But for now, I can’t bear the thoughts of a nursing home. He’s not there in the mental state yet. The physical, yes. I do everything but walk for him and feed him. Sometimes I do that at the end of his meals, as he gets tired of dealing with it, just moving his food around on his plate. And I want to make sure he’s eating enough. But for now, I can deal with it. Knowing one day, I won’t be able to. Thank God I’m in good shape myself! So we go from day to day. Thanking God we still can. So stay strong and enjoy the good times you are still able to manage, because in the future, they will be far and few in between…….praying for you.

  9. Jolinda says:

    Your writing is clear, honest and loving. You inspire so many around you, as you see here, and how could this ever be failing in the big picture of things? And loving to “get away” is part of any healthy kid’s childhood. That you have each other is what matters. You are loved and they are loved and this gift you give to Jim, you give to the world. Hang onto your humor and small moments of joy. <3

  10. Karen, “it won’t be as pretty, as happy or as idealistic as any of us would like or have wished for,” is the truest sentence about Alzheimer’s I’ve read in some time. It’s especially true of early onset Alzheimer’s. I lost my Dad to it and my grandmother to late onset at the same time and our family developed the mantra of “it’s all we can do.” All we could do sometimes was hide out in the laundry room and gulp wine out of a coffee cup, other times, all we could do was answer the same question a thousand times and still others, all we could do was be grateful for one more minute with these two people we loved. You (and your dear kids) are doing all you can do. I am sending so many good thoughts to you and hoping you will be gentle with your self. You are doing all you can do. Big or small. And it really counts.

  11. Jeri says:

    I read this on another Alzheimers blog and liked it……”you never know how strong you can be until being strong is the only option.”

    I think that describes “caregivers”as a whole, don’t you all? It’s just that sometimes we just don’t feel so strong and other times we just don’t want to HAVE to be strong…..we miss having someone around to be strong for us or atleast with us, right?

  12. I understand that feeling of being taken by surprise, even when you know it’s coming….

  13. Lisa says:

    Thank you for your honesty. Even though you probably don’t feel it, you are very brave. I haven’t walked in your shoes exactly. My mom had dementia and lived with us. She passed away in March. I am still healing. My husband will be 81 soon and had surgery in June. I have been thrust back into the role of caregiver. I can empathize. You and your family are in my prayers. I know that God will continue to give you the strength and the wisdom you need to get through this.

  14. Mary says:

    The key to moving to a different state of being is going to be acceptance.
    You have such a fighting spirit and a will to be strong! These are wonderful qualities that will forever serve you well. But right now, they are keeping you from moving to the next step, one that will bring you peace of mind. And that is acceptance.
    It is not failure to accept truth. Truth is right smack in front of your face every second.
    Yes, you all have been dealt a terrible, unfair hand that you can’t stave off no matter how hard you wish, how much you love, how chillingly you worry.
    Your children, especially.
    But Karen, I can clearly see that when you take that tremendously stong effort that you put into denial, you will start putting it into solutions, and every one will in turn benefit.
    It is a tragic moment when a mom cannot protect her beautiful, beloved children from awful truths and responsibilities above their age. But you didn’t give Jim AAA, fate did. You can set aside the guilt and grief and say, “This is our family now. here is what is needed of you.” Ultimately, despite the extra burdens, your children are going to know how strong they are….. IF you give them a clear path.
    And that means honesty, accountability, and fairness for ALL, including you!. Yes, they are having to be more responsible than before (no missing the bus, no “forgotten” lunches, assistance with household stuff, etc)
    But Karen, it will help them so much to have a positive way to react to this chaotic, heartbreaking time. Please trust me on this; they may not love it, but it will help them when stuff is clearly understood. They will mess up and rest you, and need to lash out when they’re sad, for sure. But they’ll be a part of the team instead of fighting against a terrible unknown. And you’ll be supported as well.
    Sending peace and healing your way!

  15. Michelle Fox says:

    I very much agree with Mary. As I have said many times, Karen, you have to dig deep and accept this new normal although there is nothing normal about it.
    You can no longer expect Jim to do anything, leaving him lists of ” to do’s” is setting both of you up for failure and frustration. You know this disease well enough to know how his mind is working….it is not doing very well. He needs to be able to accept the disease as well.
    It is a rotten deal, we all agree. I could use every vile word I know to describe this disease but to no avail. I learned to live and love with Alzheimer’s Disease and we were much happier. I only wish, I had Mom back, even for one last hug…. Bless you Karen, I know the struggle is tremendous and so very hard for you to accept.

  16. Jane Gayer says:

    My husband is 76 (11 years older than me) and in the mid stage of Alzheimer’s. I can’t imagine what it would have been if he had begun this journey in his 50s. You and I have very similar personalities, and boy, do I feel guilty most of the time. I was a take-no-nonsense professional which does not work at all with this enemy. Every day is some new reason to wonder how I will survive. And of course, I know my husband won’t. Thanks for sharing your story. (I’ve been following your blog for about 9 mos.) I think you are a perfectly strong woman and have continued to develop the super powers it takes. I admire your strength. Jim and your children are so lucky to have you. I really do mean “lucky”. Without you, life could become unbearable for all of them. As you well know, you have sisters in this messy confusing process.

  17. Andrea Spencer says:

    My husband is in stages similar to Jim’s. I give him towels to fold and have him pull weeds in the yard while I mow. He also pushes the cart at the grocery store and helps me load and unload the groceries from the car. It doesn’t matter that only some of the towels get folded or if they are folded the way I like. He also doesn’t pull all of the weeds and gets easily sidetracked. But they are not important jobs and it gives him something to do. One day he decided he would clip coupons from the Sunday paper and he spent literally hours moving them around the table, cutting some, trying to organize them in piles, etc. He enjoyed doing it because I didn’t tell him I wanted them done any certain way, so he didn’t feel he wasn’t able to do it “right”. I am a bit of a neat freak and like things done a certain way, so I am still learning to let go of what are essentially my issues with the way things should be done and give my husband some small tasks that he enjoys. He was an incredibly helpful spouse before EOA, so he really enjoys feeling that he is still contributing to chores and such. However, unlike you Karen, I work from home 5 days per week. I am able to be here to supervise him. If I did not work from home, I would have to have someone either come the house to be with him or take him to some sort of adult daycare. He can’t figure out how to use the phone or change channels on the tv and I would afraid he would accidentally start a fire trying to cook or have someone come to the door to sell him something (which he would buy), etc (endless list of possibilities). Please stop berating yourself. You are doing the best you can under difficult circumstances. I will pray for your children. They too are stuck in a situation that is beyond their control or escape.

    • Marsha Carpenter says:

      Patience was NEVER a virtue I had, not even a little bit. But my husband’s Alzheimer’s has taught me more than I could ever know I was capable of…and YOU are not a bad wife or mother. You are just trapped in this horrible disease that never gets better, just harder. Let Jim do what he can, if he does it wrong, who care, the world will still keep on turning. My husband built our last house, there wasn’t a thing he couldn’t fix, he was an accountant. Now we do puzzles for 5 year old’s and my latest gift was “pop up” books for 2-4 year old kids. I can’t remember the last time he could use the remote or find his own clothes or shave or bathe by himself. Little by little we keep what we have and learn to accept the rest. Some days he asks if we are still married, or introduces me as his mother, or thinks his son is his brother who passed away several years ago. We just “go” with it, I remind him we are still married, that Rick is his son, and then just let it go. Some day your children will understand. All of mine are over 40 and some still do not, but that’s okay. Some visit, some just call – he does not know who called 5 minutes later or who visited – but that’s okay too..we do these things for ourselves knowing we did what we could. Stop thinking you are wrong, most of what is happening is beyond your control. Get help however you can…at one point my granddaughter came two days a week & they both enjoyed it..he is too far gone for her to do that but she learned a beautiful life lesson and I will always be grateful. It doesn’t seem possible now I know, but there will come a day your children will realize their “gift” to Jim is the understanding that will come with time. You are constantly in my prayers. Take a deep breath, take it ten minutes at a time, kiss Jim and the kids – then you will have done your best.

  18. Lucy Chamberlain says:

    Thank you for being so open with your feelings, I identify so much. My husband Anthony is also early onset but he is further along I think. I help him dress everyday, and bathe him at night. We have 7 year old whom we adopted from Vietnam before Anthony was diagnosed. I am a working artist who was the main breadwinner for many years. Now it is very difficult to transition my life out of traveling and the psychic energy it takes to be a sandwich caregiver (thats what the woman from the Alzheimers Assoc. called it when you are the partner of, while with young children) seems to leave little room for my creative. I identify with the financial fear, the resentment, the guilt I fear for resenting my role, the worry our child will be burdened horribly as time goes on, and the deep sorrow and loneliness at the loss of my partner, the first love of my life (our son is the second). Thank you again for sharing all, I feel a little less alone today, a little more connected.

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