Cookie, I think only those of us who have had loving spouses turn angry can understand. It was exceptionally hurtful to me when people said it as well. He had no more control over that part of his AD journey than he does over not being able to walk now. The disease affects them all differently, it is painful enough without blanket statements that can only hurt one further.
As for his SS check, the paranoia can be so difficult to manage. I can't imagine how hard that must to be to handle! I am no expert, but where he is the one dispersing the cash, I wouldn’t think there is anything you can do until he is deemed unfit to handle his finances and you can get POA or legal guardianship. We never had this particular problem and I have no idea how I would/could have handled it. Maybe others here have and can share their advice…..
unless you already have durable power of attorney for finances and healthcare, he may not be willing at this point to give you that. with the relatives involved now it may be the only way for you to proceed is to get legal guardianship. with his already being taken into custody and remanded to medication adjustments, it may be what you need to get this in order and then you will be the one to handle your financials. several folks here have horror stories of the savings being depleted long before they could get a handle on the situation so its not uncommon for an AD person to know how to go about diffusing the monies without your knowledge. dont wait, get with a certified elder law attorney and find out your options.
Got up this morning thinking "I am so exhausted" mentally and physically. I don't have any energy to do all the household tasks that wait for me. Then I think What's wrong with me because my DH is not even that advanced yet! This Dx and day to day living with all those reminders of what is and what will never be is sooo draining! I feel like As caring as family and friends have been, no one really knows how this feels. ONLY OTHER AD SPOUSES. I found a support group near me and went last week. I can't wait to go back!
Oh, I forgot the guilt part!I feel guilty for complaining. I feel so heartbroken for my DD. But, I too don't see caregiving as a privilege. It is just the consequence of our broken dreams.
Lorrie: True, no one really knows, I certainly didn't before it happened to my DH. But knock off the guilt, none of it is your fault. Guilt can impede your ability to do the best thing for your loved one and yourself. A support group is a Godsend, you are wise to do that, you will learn so much. And complain all you want here--you've earned it.
Betty You are so kind to respond . I am really touched by the caring people who are part of this site. Your words are what I needed to hear. Yes, guilt is an impediment.. Sometimes, it feels good to have a place to vent where no one judges You.
even though your DH is not necessarily advanced its still some of the most draining and mentally challenged times we deal with. those earlier stages where everything seems overwhelming and we have no built up immunities per se yet, well they are just horrific and quite debilitating. when you get to end stages you have formed some types of mental measures to deal with daily challenges due to the overall longer time frame. i still think those early to mid stages were the worst for me, and i am going on 13yrs this year and we are years into end stage and hospice. no need for guilt, thats easier said than done. but we know we do the best we can and nobody can expect more. it has to be enough. divvi
he was 66yrs old when we finally got a firm diagnosis.he will be 79 next month. if they are fairly healthy other than the AD it can happen Dazed. the mind is gone but the body is still healthy enough. once they become bedbound though things move quicker and i see considerable evidence the body is shutting down with so little exercise now. but even then hes lasted 2 more years end stage. i guess its the physical makeup that makes the difference. the only other meds are prilosec and blood pressure as needed as it fluctuates daily and an occassional ativan for sleep aide.. we just never know do we.
Divvi, Gus was just diagnosed at 65 and is in excellent physical health. When I think of you going through this for 13 years, it fills me with despair. I worry that I'm not strong enough, kind enough, enough of anything to get thru this for so many years. And then I feel so sad and guilty for that despair. I don't think I can do it and yet I know I have to. It's the first thing I think of when I wake up and it's what keeps me awake at night. I've always thought of myself as a problem solver, and this is a problem I can't solve or perhaps even cope with. And my mind just whirls around and around.
Lorrie, I am always exhausted too. This disease drains me mentally and emotionally. No one cares, understands, nor wants to understand what it's like to have a spouse with this disease. They see them in a different light because in the beginning to middle stage they can cover-up and even fool the doctors. I usually turn in to bed by 8 p.m. and close my door in my bedroom to hide away ....sleep by 10 and from midnight on toss and turn. Awake in the morning to face another crappy day walking on egg shells....hiding keys, mail and telling fibs. It's bad enough we deal with loneliness on a daily basis, but to live like this for 13 years like some...this is pure hell.
sorry friends, dont mean to cause despair!but yes sometimes the disease can last longer than the norm of 8yrs after diagnosis as they predict. but then too remember it depends on the type of dementia yours has too. sometimes the disease can hit a critical area of the brain that operates vital organs and its over very quickly. sometimes other factors like infection,stroke or heart issues can surface as consequences of the AD as well. it all goes hand in hand. not everyone will deal with so many years of caregiving. most do not. if any consolation, you do become more adept with dealing with the disease, controlling patience and frustrations, and turn a blind eye to everything except whats truly important. i think there are many of us here now past the decade mark. most also opt to place after some of the other symptoms become issues, so by no means does it mean you must be a handson caregiver for so long. you will still be an ongoing advocate if they are placed but it makes the way alot easier too. dont look too much at the future as we know nothing is the same for any of us here. this disease has its own mind and will have a very different path for each of our spouses.
Button My story sounds the same as yours. My DH too just diagnosed at 65 . I can just say that everything you wrote is exactly how I feel. I, too, wake up everyday with that sinking feeling that this dx brought. I can't sleep because my mind whirls on and on with all the different what ifs and what will I do scenarios. Trying to find a way get through this.. I found a support group last week and I think it will help to be connected to others who understand. Have you tried that? I also am now seeing a wonderful, compassionate therapist. I am fortunate to have excellent medical insurance Since I worked for N.Y.C. I am grateful for that. We need to reach out to find grab any "lifesaver" we can. So glad to have this site and all who share their experiences and strength.
Lorrie - I sat for 2 years before I realized was sitting there waiting for him to die when he was still early stage. We packed up, fired up the motorhome and continued our travels - only difference just I work now in the parks, not him.
I understand what you mean! Sometimes, I get those feelings too. It seems like I think Why bother doing anything
when I am just waiting for things to get worse. I really don't want to waste this time so I am struggling to find ways to still enjoy life with my DH now. Thanks for your example.
Oh Divvi, you don't cause the despair - it's this ugly disease. I aspire to be as strong and graceful as you are.
Lorrie - I'm exploring both the idea of a support group and/or therapist. Especially the therapist - I'd like somewhere I felt comfortable crying besides the shower.
And I think Charlotte's advice is excellent. Gus and I both have vowed to try to enjoy whatever time we have but I do struggle with "what's the point?" I think he's making a heroic effort, and I only hope I can follow his example.
Button Hear how you and DH talked about AD together . Since my DH 65 at dx and at moderate stage, we (daughters and myself)after much thought Did not use AD word. He tells everyone he has something wrong in his brain He takes his meds and I unhappy about not driving but otherwise doesn't Seem to think about or understand or worry about the future. Leaves me to act like all is fine. I too, cry in the shower or the rare Occasions I am alone in the car . Support group is like meeting for tea with all of you. Wish we could too!
Lorrie - I know I'm lucky that Gus and I have an early diagnosis and that he accepts it (tho I think he doesn't realize exactly how the disease progresses and that's just fine with me). I'm trying hard to "stay in the day" and not think about the future so much. It's amazing to me how much being able to come here and visit with you and the others helps. And thanks to your encouragement, I've found a support group and plan to go on Friday.
Divvi is right on--early and beginning of middle stages were much harder to deal with. Almost 8 yrs after dx, I still feel sadness but it isn't all-consuming like it was years ago. My focus now is keeping him comfy, safe and pain-free for the rest of his time. Moving him to an ALF 18 mos. ago has allowed me to have a more normal life and was absolutely the best thing I could have done for both of us. No guilt here.
As an aside, those of you who watch Downton Abbey--interesting that Edith is apparently somewhat involved with a married man whose wife lives in an "asylum". She asked why he didn't divorce her, and he said it was because it wasn't allowed. Will be fun to see where this story line goes.
Re: Downton Abbey - I thought AD immediately. I've been shocked recently by how many times it's turned up in novels, articles, movies, etc since dx. I guess I just didn't notice before.
Button I am glad you are going to try a support group. I hope you will find everyone welcoming and helpful as I did. When I was going, I thought just let me find even one person I can relate to. I go again tomorrow and I can't wait! Sounds so crazy when I have close friends who care and will listen . But, it's so comforting to be so honest and open with someone going through the same struggle.
When I first got involved w/AD, I thought of both 'Jane Eyre' and 'Jekyll & Hyde' and thought that the authors probably based their characters on someone they knew w/bizarre behaviors, probably what we know today as AD, but in those days, of course, no one would have known that.