I have returned from Computer Hell with a new blog. I invite you to log onto the home page - www.thealzheimerspouse.com - and read it. Sorry it is not an upbeat one, but I can only express what I am feeling at the time. Maybe you have felt or experienced what I wrote about. Please post comments here.
Joan - you have expressed my feelings. It is hard to not feel this way and yes, I know be thankful for what you have but being human I don't (always) follow that. Others on this board are having more problems than I at this time but I know unless death comes first I will be at their place in the future. Thanks for saying what I'm feeling when we are in our church - among all our long time friends and yet feel left out.
Joan: you nailed it. listening to friends with normal lives and exciting plans for the future ... emotions run the gamut from rage, to it's just so unfair, what did we do to deserve this? ending in despair
Joan While my journey has ended I do recall those same feelings of despair especially during the last year my spouse was alive and I Knew that the end was drawing near. Having been associated with death due to involvement with the fire service I could see as well as sense the end. The signs was there and I knew what they meant. I also knew there was no stopping it. The frustration and despair became quite overwhelming and as you so very well stated it was because of what you were losing and others were still able to have even though they may even be older than you. We did not go out as you talked about and intermingle with others because she had long ago became unable to mingle or go into even a grocery store. While she would go in the car that was the extent of it and as soon as I came back out she was ready to go home and go back to sleep. Probably the most frustrating was the fact that asleep she was very manageable but it also required me to be beside her almost 24/7 which gave no respite what so ever. It is not an easy journey but as you already know life is not easy. But my faith carried me through it and I know that through my own experience that God will carry you through anything if you just let him. This a phase of life that probably is the most difficult that you will ever face in you life time. The only thing that I can think of that would be worse would be the loss of a child. God bless you for writing this blog and may He ease your burden and carry some of the load you are carrying. God bless you and all the others here on the site. Bruce D*
Joan, I am sorry you had such a tough weekend. We can all relate to the despair……I think it not only healthy but vital to be honest about our true emotions. If we hide behind the fake smile too long, the world comes tumbling in around us. I think we do more damage when we try to pretend that happiness is simply a choice and has nothing to do with the sheer hell we are being forced into to. Of course one does have control over their attitude, but we can not control much else in this journey. Sure a positive attitude is wonderful, but none of us can be upbeat ALL the time. It just isn't natural!
These are real honest emotions and I think it much better to admit them to ourselves and deal with them as they come. Not let them consume us, but certainly acknowledge them. Pretending, is just that, sooner or later one has to deal with these losses and the emotions that come with them. Better to just "face that fire, walk right through it" IMHO.
I guess I am one of the lucky ones who has never had to deal with envy of other couples. One never knows what goes on behind closed doors or what personal battles others are facing. Others will always have it worse than me, and not for the first time I have heard myself saying " there, but for the grace of God go I" I was never one to wonder why me, why not me seems more logical.
Ha. I think I'm spared from getting upset by observing other couples because I don't have a social life! Not that it's made this month much easier. For whatever reason, I tend to be in the "why not me?" camp too. Maybe that's not good. Maybe I'm just so smushed these days that I'm a little defeatist.
I know exactly how you felt, Joan. I had a similar experience last October. I would not describe what I felt as envy. Just an INCREDIBLE sense of sadness, loss, and grief for what was gone.
From my blog last October: “I’m also a little down about a trip to Boston we just took to celebrate our 25th anniversary. A few years ago, this would have been a wonderful long weekend get-away. This year it was just kind of sad all around.
One night we went to a comedy club. It was a cozy, dimly lit club filled with couples – all engaged in conversations – happy and loving. The men had sparkles in their eyes. Wow! I had almost forgotten what that looks like – having a partner sitting next to you who is engaged and engaging! We sat in silence for 20 minutes until the show started. It was all I could do to keep from crying, realizing I was never again going to have what those other couples have.
I need to remind myself of all the wonderful years DH and I have had together. We’ve been truly blessed because not everyone gets that. I’m very thankful to my mother for having taught me that no matter how bad I think I have it – there are always others who are far worse off. What is that preschool song?... Count your blessings, name them one by one, Count your blessings, see what God hath done! DH’s condition aside, I can count many, many blessings! Thank you God!”
just like with any grieving process the sadness and despair will crop up at odd times. the pre and post grieving, for what we have lost post AD and pre death. all that middle ground lost in a sinkhole. i know i get these feelings often when i see happy couples too. i think its very normal to feel this way under the circumstances.
Joan, you hit it right on target. If it wasn't enough that we feel guilty when we lose our patience with our LO, then there is the guilt we lug around when the green eyed monster creeps in when we find ourselves down and out because we SEE all around us what normal should be...and we live not as a couple anymore but as a caregiver not too different than a hired CNA for our LO with no plans to make that we will share in remembering, no anniversaries remembered, no birthdays or Christmas holidays...we will role play but the thing that makes it "real" isn't there anymore...worst is the frustration we feel as a spoiled cherry on top is the realization that most of our family members and friends just don't get anything about this damn disease. We can't win for losing.
When I saw this title for this thread, I crumbled. I am still crumbling. And I read your blog Joan, honest and raw as usual.
It seems to me, that despair has always been there, just hiding in the corner. Then, life comes at you in weird ways, someone dies, someone gets a broken heart, cancer, or your mate gets dementia. Despair is almost a daily thing.
I so want to become well myself again, to believe there is happiness coming. To not have this feeling that so much of the life I knew has ended, the carefree part, the silliness, the hoped for vacation or outing. That I have finally left my youth behind, and maybe, should have done so long ago.
YES YES YES there are worse things, more suffering and ugliness. But that does not negate our despair. And we have only know for less than two years, it feels like ten.
I saw my sister fighting death last year, you would think that would season me. Yet, I see tears and fears in him, a strange slow death.
I don't want to sound so hopeless, but oh I feel it. Will it end? Will things be good again?
In our environs, spending most afternoons socializing with neighbors while dangling from a noodle in the pool is the norm. When. the conversation turns to travel, shows, etc. -all the aforementioned triggers, my pat response is "enjoy it all while you can.
Joan, another wonderfully done piece! Thanks for your honesty and for putting things in perspective.
Despair can creep in, no matter what stage of dementia your spouse is in. Yes, you can be thankful for small things ... but at the same time, you can feel despair.
I find myself envious of friends and family who have lives unencumbered by this disease. Yes, they have problems and stresses from everyday living - no one has a perfect, carefree life. But they aren't caregivers, they have their spouses who are healthy, they have that partnership I so dearly miss.
Nikki, I love what you said about not pretending ... because I have seen people do that in this situation, with the fake, Pollyanna attitude while denying what is really going on.
That is why I love coming to this site -- people are honest about the emotions that come - have to come - when your loved one is suffering from dementia.
Mary22033, your comment about going to the comedy club got me thinking about all the shows my wife and I attended. Now there is no hope of going. A local group is doing "Man of La Mancha" this weekend. My sister suggested she stay with my wife so I could go. She, being single, doesn't understand that seeing a show alone is much different than going with a spouse. I know I couldn't enjoy it, so I stay home.
Joan, I have felt your despair. I have stopped taking DH to shows and restaurants. We only go with our children or friends who are mostly widows. DH can still go out, but never talks to me and when he talks to others he makes no sense. He enjoys being with a group,but has little to contribute. He seems to be failing this week, having problems with dressing and communicating. We have a sort of sign language where he points and I try to read his mind. He goes to a day program three times a week and the rest of the time we are at home. He pretends to read, does not enjoy TV. I read, watch TV and do all the rest of what needs to be done. Right now I need to complete the taxes. Today, is my birthday. I told him it is my birthday and he said I know. That is all.
Joan, as always you are unfailingly honest about the AD journey. Today I've been getting documentation together for our income taxes. I stopped involving DH long ago on this front. I was becoming increasingly anxious as I gathered everything together and feeling resentful that I do it all alone. Sometimes I feel like I'm in an ongoing episode of "Fear Factor" and I know I'll never win. My DH is not that bad yet. I just don't know what I'll do when he gets worse.
maryd-your cyber family wish you a happy birthday. Even though it won't be a happy one for you-it still matters. And don't mention taxes. Last year wasn't too bad because my husband was alive part of the year and I could still file jointly. No one told be it was a whole new ball game this year. With much help I am getting it sorted out.
I relate to your article, Joan, but especially the last paragraph. I, I think, have given up on the fact that we can go out and have a good time with friends. We went out to lunch with a group we get together with every other month and the only time he can interact is if they talk about old times. Then, he can talk their arm and leg off, but when it's regarding something recent, he's so quiet it's as if he isn't there. There will be no weekend trips together this year. He's already worried about our one week family vacation in a couple of months. He doesn't want to go. When I ask him why he doesn't want to go, he says he's afraid. He feels best, I know, when he's at home. When he knows he has to go somewhere he ruminates on it over and over and over. Easter Sunday is one of those days. But I can't get him to see that it will make ME feel better to go.
I try very hard not to think of what we can't do. It doesn't do any good to want what we can't have. But yesterday I felt like you, feeling overwhelmed and depressed and wishing for what I can't have. Today I feel better. I don't know why. Getting things together so I can get our taxes done tomorrow, like so many of you here today, isn't something that should make me feel better. Each day is different. What I do know, though, is that, even though I'm not writing on here every day, I take a little time each day to read what all of you write and I've learned so very much that I'm so grateful you're all here, because I would not have learned how to do and how to handle so many things without your help.
You've described Sid to a T. If an old friend is here and can talk with him about things that happened 50 years ago, he's a non-stop talk machine. Or if he's allowed to talk about his work experiences. Other than that.............silence. It's so, so sad.
This blog hit me really hard. It finally made me take a good, long look at what I had been feeling. Yes, despair is the right word. I even looked it up in the dictionary to make sure it covered how I felt: lack of hope, hopelessness. Exactly right. My whole life has been stripped from me—my husband as I knew him, all our plans for the future, whatever financial security we had, the love and support of both our families, and now we are losing our home. Why wouldn't I feel despair?
I sat down this afternoon and tried to think of one nice thing I could look forward to. I couldn't think of one single thing. I know that with my husband's condition, right now is better than it will be next month or next year. My own health is declining rapidly, from constant stress and work. Our money is gone. And the monster that really keeps oozing out from under the bed is this—when it comes time for my own final illness, and I need all the help that I've given to my husband, there will be nobody there to help me. Nobody to coordinate with all the doctors, see that the bills are paid and the kitchen is stocked, and take care of me when I'm feeling terrible.
How could we not feel hopeless in this situation? Somebody wrote recently that their therapist had told them that if they weren't depressed in this situation, that they were delusional. I'm not delusional, but something else… I feel like the very essence of myself is slipping away from me, day by day. I guess that's to be expected, when your whole life is about what somebody else wants and needs. But even harder times are ahead, and I'm afraid that I no longer have the resources left to meet those harder times. I don't think I've got one more crisis left in me. This week I start my tenth year of caregiving. What a very, very long time that is.
jank all you say is so true. we have a reason to despair when all is about the concerns and daily living of one we care for. no time for ourselves. i am so sorry for how you are feeling if you havent already, maybe speak to a clergy member or trusted family friend, or dr who you can ask for help to cope. depression can become our worst enemy. we are here for you if you need to let it out. we all have our days. divvi
The reality of all this comes new to me every day. At present our riding lawn mower is stuck behind the garden shed with something broken so the front wheel is not connected to the steering. See I'm really up on lawn tractors. The rototiller has a flat tire and I can't get the wheel off so I can take it to have the flat fixed. My son has tried to help me but honestly we can't really figure out what to do. My dear husband would have taken care of both and all I would have known was that he was about taking care of it. Those days are gone and I'm again feeling like a leaf in the ocean. He will never be taking care of anything again. Taxes are to be done this week and I'm not sure if I have everything we need gathered up. Just last year he was able to help me and I used the online tax form to get them filed. This year he has no idea if we have all we need and he isn't interested in even looking with me. I feel despair and fear that I'm not up to taking care of everything. He was so good with our finances and thinks I'm not taking care of our money. So anxiety, sadness, loneliness and on and on are my companions. I too wonder who will take care of me. I'm POA for my 90 yr. sister and it takes time and patience. We have two sons and a daughter. Daughter isn't reliable at all. Sons are more so but will they really have time or interest if I have a lingering illness like this. I won't borrow trouble with that kind of thoughts. Maybe some may wonder why the lawn tractor and rototiller? Well dh can still do those things and he likes being outside. I want him to do the things he can as long as he can. Maybe like the taxes next year he can't.
Joan I have also felt this despair. Not only with other couples (which they do not call to do anything with us anymore) but also with my 2 sisters. One sister and her husband travel 2 times a year and the other has shopping trips with her daughter and games to attend with her son (we attend some of his games, depends on how tired Dh is or I am). I have never been jealous of my sisters, but I am very envious of the things they can do now that I can't. Is that jealous. I really am happy that they can do all these things. They are very supportive of me and watch out for me. I would like to go to the grocery store without feeling guilty that I did not want to take my husband. There is a perk in one month I will get senior citizen discount if I take him. That sounded bad. My DH does not even walk beside me anymore, he is always right behind me. I have actually stepped back and on his foot. That is how close he walks behind me. I to feel that I don't know who I am or where I am going. I feel that by the time this is over I will not have any life left to enjoy. I love my DH, but I am lonely and want to be able to visit my daughters out of state, and work a full-time job. I really miss being at my job and seeing people everyday. We do all have our days, and some is just crying in the car when I do get out for a few minutes.