Hello. I'm a new member. My husband has had Alzheimers for about 7 years and I still can't seem to accept it fully. I keep waiting for my life to get better, rather that finding joy in the little things. It's just very wearing. Some days are better than others. Some days I'm just angry. Some days I'm just sad. Anyway, my therapist suggested I join a group of some sort so here I am. I'm sorry my post is such a downer. Blue
I'm happy that you found this site. It did so much for me when I was in your shoes. My wife passed away five years ago and after spending so much time here while going through the dementia years, I keep returning here every day.
You need to tell us more of your situation so we can offer some suggestions.
No apology necessary, Blue -- this whole Alzheimer journey is a down experience. But we used to have a thread on here called something like "Alrighty Then" where folks would post things that were sort of sadly humorous that their spouses did or said. I'll see if I can find it and bring it to the top to offset your down feeling. And welcome to the club!
Welcome Blue. We all deal with the disease in different ways but the basics are the same: sadness at the losses, sadness of our dreams gone; sadness of loosing our partner; anger at the disease; anger at ourselves; anger at our spouse which we try to hide because it is not their fault; and the list goes on.
For me I try to keep 'detached' so I don't think about the losses, but as these disease wears on (in year 11) and I wear out it is getting harder to detach and hide. Lately there is much more anger and I take it out on him which thankfully he forgets.
Feel free to vent - safe place to do and we understand. Not much most of us have not heard and/or felt and gone through.
I'm afraid that if you want your post to be a downer, you're going to have to do whales better than that. Do what I did. Open your window at 3 in the morning and scream out of it. That's what I did and I'm sorry to report it didn't make me feel better. Or the neighborhood, I would imagine. Never mind.
The group you are joining either are in the same boat as you or were in the same boat. Everybody knows as other's have said. At any rate, welcome.
Welcome Blue. We are here to listen, help & support you.
I can relate to your difficulty in accepting this disease. My husband has Alzheimer & I fought it tooth & nail. I didn't want to travel that scary path – I was going down that path kicking & screaming. I'd been emotionally "hanging on to my husband", hanging on to him for as long as I could & as tightly as I could – I knew the disease was taking him bit by bit, but I was not ready to give him completely to Alzheimer. Until one day, during a time when he'd been declining rapidly, I noticed I was feeling a bit better emotionally - that heaviness I'd been feeling was lighter. I realized I had finally “let go”. During this period of quick decline, the disease had taken a good hold of him & he slipped out of my grasp. I knew Alzheimer had won & I could no longer be in that tug of war – I had to let go. Letting go gave me a sense of peace. I certainly was not feeling great, but I felt a portion of that heavy weight had been lifted, so I was feeling better. My daughter & son both noticed the change in me, before I even told them about it. Now, I was still angry & upset about the disease & what it had done to our life, but to a lesser degree. Letting go is hard to achieve, but rewarding. I hope you find a sense of peace soon.
I also have been waiting for my life to get better, but it just doesn't happen on its own – I have to make it happen. I'm trying to find joys in the little things. I purchased a Daily Gratitude Journal to write all the good things in my life. I'm making an effort to think positively.
Thank you all for responding. I was feeling very alone. It's hard for me to open up about my life because I feel like I'm whining when I have so much to be thankful for. My husband has a very positive attitude and is still able to go to the bathroom on his own and takes showers and brushes his teeth when I prompt him. His children are pretty much not in the picture but my daughters help when they can. I try to be thankful but my depression gets the best of me. I feel like I'm hanging on by my fingernails sometimes. It is such a scary path, I agree. I'm so glad this is a place I can vent.
This kind of goes with what blue was saying. I was sitting here playing my computer games with him in the chair sleeping. The baseball game was on for him but he naps through it. Why I even try putting on something he could watch I don't know. I found myself wanting to have someone to chat with.
I had my headphones on playing Michael W Smith worship music and tears escaping my eyes. It hit how alone/abandoned I feel. He is here - but he is not. I can't share with him cause he doesn't care, can't have a conversation worth anything, etc. I am not near as lonely when he is at day care and I am by myself. In fact, I don't know if I do feel alone when he is gone.
He will be gone back to day care tomorrow. Yahoo!!
Welcome Blue. I tried to write yesterday but my system was down. Love the name. Wish I thought of that. This is a great place to come when I am blue. I used to worry that I was whining too much and saying the same thing over and over, but Lindylou and others straightened me out on that. Here we don't mind, can relate and will send virtual hugs and even lifelines ----*-----*-----*----* to hang onto. (((Hugs))))
Thank you all. It is soooooooooo hard to accept and let go. You would think after 7 years I would be able to. I'm working on putting my faith in God and knowing that He knows my situation.
Hi Blue, Please don't apologize to us for being miserable. Your feelings are your feelings and IMO, perfectly reasonable for someone who has spent years caring for a spouse with a terminal illness. We understand because we feel or have felt that way ourselves. Sure, some people are able to find joy in the little things (cups of tea, nature, etc.) and if that works for you, fine. But don't force it. My husband died 1½ years ago and while he was alive, I was completely consumed by his needs. The best I could do was to try to give myself a break from the stress and not to get too exhausted. It was only after he died that I was able to take pleasure in the little things. As the others have said, we are here for you no matter what kind of emotional shape you are in.
Welcome Blue! I can only echo what everyone has said. This is a place to cry, gripe, share your problems and your joys - and there are some, it just doesn't feel like it sometimes. This has been an especially hard week for me, we've had out of state company and DH is having a terrible time processing the change. As the week went on he's gotten worse - no amount of explanation helps. Trying to get through the night, since company leaves tomorrow. Each day brings a challenge with this disease, each day has to be faced, even though we wish we could just run away.
Hello. I'm new. My husband was diagnosed with AD in 2015. We are both 69 and live in our own home with our two rescue doggies. We are retired hi school teachers. His progression so far has been slow. I am feeling overwhelmed by what I know is to come. My mom suffered from AD for 8 yrs. I also cared for my dad who had heart disease. I have suffered from depression for many years, and both of us see a geriatric psychiatrist, who has been a comfort. My adult son and daughter live nearby and are supportive, but I feel trapped and isolated. We are fortunate to have long term care insurance. I saw how expensive nursing home care can be after my dad had to place my mom in a private pay home for six years. My husband is resisting my hiring a personal care person so I can go out once or twice a week by myself. My stepson and his wife live out of state and don't think anyone should ever place a loved one in memory care under any circumstances. Stepson doesn't have a realistic understanding of AD. When visiting a few weeks ago, he asked if his dad might regain driving ability! Uh, no. Thanks for letting me be part of your discussion group.
Welcome to a group no one ever wants to need but we are here for you. Yes, depression is something probably most all of us suffer at some time. Placement is often necessary unless you want this disease to take two people.
Welcome Lulu - We are here to listen & to support. I agree with Charlotte - placement is often necessary if you want to remain fairly healthy. The disease already took your husband, don't let it take you. Before I placed my husband my daughter told me the grandchildren had already lost their grand-father, she didn't want them to lose their grand-mother also. That had an impact on me & certainly helped in the placement decision.
Hi Lulu. Check the terms of your LTC insurance. It may cover respite time for you given that you do have a diagnosis. Your husband may be more amenable to using a benefit that you have/are paying for in terms of his willingness to have someone in. Another work-around might be for you to hire someone "to help you with housework" for an hour or so a week. Even if your husband protests, he will become accustomed to this person's presence, and then you can lengthen the time and modify the duties. Obviously the person you hire has to be in on the story and know that caring for or being involved with your husband is the goal. While it goes against the grain at first, loving deception can smooth the road.
Hi lulu, and welcome. That's great that you have the LTC insurance. My thoughts are exactly the same as what CarolVT says. Many of us have eased a personal care aide into the household by creatively explaining their presence. Try a few approaches and see what works. One thing that often worked with men my husbandwas to ask him to help me by doing some errands with the aide. He was delighted to get out of the house.
As far as your stepson goes, isn't it amazing how people who are so ignorant about the disease have such a strong views about how to treat it?
Lulu yes trapped and isolated I think we all can relate. You mentioned you have suffered from depression in the past well one thing you need to do for you and for your husband is take care of yourself if you go down you will be no good to yourself or your husband. There is nothing wrong with taking care of yourself sometimes we feel we are being selfish and feel guilty by looking at what is best for ourselves over what we may feel may be best for our spouse. Lulu i think many of us have felt that way but we have all needed to take the step and do what is best for ourselves to survive. Charlotte already mentioned this but worth saying again. I always remember one of the first comments made to me as we started down this journey “Alzheimers may get one of us but I will be dammed if I let it get both of us”.
So Lulu you have a family here that gets it welcome. I resorted to a bit of trickery to finally be able to have an aide come in didn’t feel good as we were always honest and open with each other but it was what had to be. Many of us have learned that fiblets are necessary and they are not bad they are what is needed to manage the situation. Good luck we are all here for you.
Hello Lulu. Welcome to our group. I am writing this to bring this topic above the spam. For the new folks, Joan started this blog years ago, before anything like this existed. There is years of history here. You can search and find tips to handle.just about anything that might come up. Joan has been having health issues and not able to manage the site as well as she would like. She is working on some changes. But in the meantime we need to ignore the spam as best we can. It is worth t to persist. I haven't found a group like this one anywhere even though there are now several spousal.support sites. Some of us are also on alzconnected.org just in case. Some great people there too. But this one feels like home.