I have returned from my vacation, and am back to doing 10 things at once. I invite you to log onto my home page - www.thealzheimerspouse.com- and read today's blog. It tells the story of how my relatives view me, Sid, and my caregiving.
You don't mention your Father--you have an added burden which I am not going to address here. But, as for my DH & AD, I've said this before - my children kept saying, 'Please, Mom, we don't want to lose you to the same disease.' Why did I stay until I'd used up my last caregiving breath? I think a lot of it has to do with not admitting that AD is what it is, wanting to believe that he can still do this, still understands that, and how can you 'put away' someone you love so deeply, how can you hurt him so? And another day comes and goes, and another day, and you do one more thing again, then again, and you get so used to your LO's behavior and routine, you sort of grow with it, you just don't see the decline clearly, and finally you realize you cannot do any more. Over the years I've read countless posts here and I know from experience that the CG does not truly see how bad things are--'he's not that bad, yet,' they say. And I want to write and say, 'yes, he is that bad, you don't want to see it.' And I want to say it with understanding and compassion, I want to say what my children told me, 'don't let the disease take you, too.'
Interesting that what my children saw, others did not. Several people were surprised when I finally placed my DH. He didn't seem that bad to me, they'd say. And that was because, as we all know, that they can so easily fool those who are not around all the time. But Sid was not able to fool those who saw him in Chicago in a confined arena where he could not pretend all the time. If they'd seen him casually, they wouldn't have noticed as much. I'll never fault anyone for whatever they do to get thru dealing with AD, but, yes, I waited too long for my own good. AD continues on its way whether the patient is at home or in a facility. And placing DH was probably the hardest, worst thing I'd ever done.
Joang, I agree with Bettyhere* on how hard it is to reach this necessary decision. Your family's take on this sounds right to me, and I would encourage you to follow their advice. If nothing else, you need to get your shoulder back to better function, and I think you could injure it further dealing with Sid physically. My kids told me it was time to place Eric, and although I always wished I could have managed on my own, I knew that they viewed the situation more objectively than I did. You will still be involved in Sid's care after he is placed, but at least you know he will have 24-hour coverage, 7/7. When we are in pain, or become sick, we can't take care of someone else, too.
Joang, we tend to keep our spouses with us too long because we don't want to admit the disease is winning. It was our children who finally encouraged me to place Phil, I couldn't see what it was doing to me taking care of him 24/7. They came to me and like Bettyhere's* children told me they did not want to lose me too. I placed Phil 11 months ago,it was the hardest thing I had to do but it was also the best thing I could have done. I am still very active in Phi's care, I'm just not 24/7 hands on any longer. Ruth M.
Interesting. Not even being able to witness your situation in vivo Joan, I'd say your son's assessment (go palliative, use pain relievers, make decisions yourself) seems right on the money.
emily's right. Plus, keep in mind that DayCare or actual Placement provides 2-3 or more persons doing the caregiving for each session or for the 3 shifts per day--and you're trying to do all that alone?
I see that and am fighting to get my DH Placed. I'll be posting soon on that dilemma. OT here.
Whoops. I didn't mean to give the impression that I or my family are thinking placement in a facility for Sid. What I am pursuing is Day Care, in home help with showering, respite services for me, and electric wheelchair rather than the walker. None of which I would have thought necessary 3 months ago. Things change fast.
Wasn't talking Placement for Sid either. Your situation is ideal for supplimenting with Day Care, etc. as you propose.I was just commenting that under either option you'll be enlisting more personnel; to do what you've been doing alone.
You know I've been advocating here, strongly for Caregivers to get help in early on; get and take respite as much and however they can get it. Classic responses have been along the lines of my LO isn't that bad; I can do my own housekeeping; my LO doesn't like/want strangers here. Think about being able to take care of paperwork, this website, your knitting business, while Sid is at DayCare and being able to relax a bit with him in the evening. Your time is best spent taking care of the things "only you" can do. Personal Care or in-home helpers can shower Sid, clean, do laundry, whatever. (I know some of that's covered already). As your family's saying, "It's about time."
we grow complacent with our spouses declines as we see them on a daily basis so its not as pronounced a loss. others can see dramatic changes over time. its true we do continue to consider our spouses more able to rationalize and comprehend more than they can most of the time. it becomes much more lonely as a caregiver when you realize they dont understand or acknowledge normal participations anymore. so we strive to keep up the facade as long as possible i think more for our own emotional benefit. your son said exactly what you needed to hear and has a firm grasp on the situation from afar. not seeing his dad over a year its quite apparent that hes lost much of his abilities. i agree you should try to take advantage of any help available and work on getting your personal health back in order as a priority. its very easy to hurt yourself with lifting and moving when you take on more caregiving issues as time progresses. there does come a time when we must sometimes force them into participating in activities that they dont necessarily want to do so we can get some relief. daycare probably is a really good idea at this point as well as some inhome help. its good to hear your family came together to give you a break. divvi
Joang, I had Phil in day care for close to a year before I had to place him. It was a great experience for both of us. I had sometime to take care of everyday things and he got to interact with others like himself. Phil is moving through the different stages quickly.Thanksgiving 2010 he was home and our family was here and it was a good day. Today, Phil no longer is able to walk,he barely speaks, can no longer feed himself and has been incontinent since September 2010 and recognizes no member of the family. It is so hard to believe the difference in 1 year. I'm not telling you to place Sid, I was just telling my experience. Each of us here have to do what is best for us and our spouses. I am so grateful I found your website as it helps me to know others understand what each of us goes through. Even our children don't understand how we feel losing our spouses day by day.
Joang, Yes, you should take the advice to heart. Maybe feel a little relieved as well to have your feelings/thoughts verified. However, I do have an observation, and please do not take offense. You stated that your son has not seen Sid, his dad I assume, for a year. Is that acceptable to you ? I would be heart broken if my girls did that to me and their dad. Linda
lannama, I can’t answer for Joan, but I can tell you that sometimes I only see my son & his family once a year. When they live so far away with families & lives of their own they can’t always just pick up & come for a visit. I moved far away from my family the day after I got married 42 years ago & I only saw my parents once a year. I guess when it’s all you know it’s not so bad. Anyway, with communication the way it is today you can keep in touch on a daily basis if you want.
He lives in San Francisco; we live in Southern Florida. 3000 mile trip. Money is a big issue. Neither of us have any extra - it's too expensive for me to pay for him to come visit more than once a year.
When we had money, and Sid was healthy and could travel, we were able to see him more often. Joel has been coming to see us since 2008, because I can't take Sid on a 3000 mile plane trip to have him sit in a hotel for a week. He can't walk from our den to our bedroom without his walker, never mind try to do the hills in SF.
Joan, I am so glad that you have such a wonderful son. I can tell that he care for the two of you very much. I agree with him too, that it would be easier on you to assume that Sid can't do anything anymore and if by some chance he is able to do something for himself, GREAT!!! But it could be disappointing for you and for Sid too to count on him being able to do something and then he couldn't.
Well, I still don't think Sid is ready for Day Care, but the agency called me today, and they are able to pay for 5 days a week, with me contributing $86 a month as a copay. I cannot pass that up, because if I do, I know for sure that if I pass on it, by the time my name comes up again, we'll both be MORE than ready. The case manager is coming to the house next week to do a complete assessment on him, and I will start him at 2 days a week. He has an activity already on Monday, and his support group two Tuesdays a month, so I figure I'll send him Wed. and Friday for now.
My sister said to absolutely go for it. Haven't spoken to my son yet, but I know he'll agree with her all the way.
When we were at my sister's, I had to help Sid shower, dry, and dress, because his knees hurt him so much he could barely move. When we got home, and I asked if he wanted help in the shower like I did at Arlene's house, he had no idea what I was talking about. He had completely forgotten that I helped him with his shower.
I guess the family is right. He's worse than I thought.
Thanks for the responses all. Joan, absolutely take the opportunity for Sid to go to Daycare. These places are all about the clients, and he will get lots of attention from many different people. It may take awhile, but he could look forward to going!!!!!!!! Linda
Take it Joan...I would in a heartbeat. I have a friend whose DH goes to day care, and when he comes home he says 'I don't know where I went, but I had a lovely time' My Dh is able to have 5 hours a week , but he won't go. I'm hoping next year as this horrible thing takes more of him I'll get some respite. Best wishes that it goes well.
The truth is that day care is more for the caregiver than the patient. I've heard it again and again, 'he's not ready.' But are you? Can you use more respite? I told DH that he was going to 'work' to help and that worked out fine for everyone, the staff was in on it, too. They understand, they've had plenty of clients, hopefully, your center will have lots of experience, too. You and Sid are lucky that he already has some activity. He should do well at day care. And it'll be good for you, too. I also got a stipend from the State of CA at the time and he was picked up and returned for something like $1.25, not worth my time and gas to drive him, so that was even extra time. Joan, and every CG, take advantage of every sliver of help that comes along--for yourself. You're worth it.
I started Jim in daycare 2 months ago. I had visited the facility 7 months prior and just wasn't ready then, especially sine he was the youngest. Most were In their late 60's and 70's. However, he began to take off walking (my 85yr old mom stays with him when I work). She could not chase him down the street, and the police brought him home because he went to the elementary school thinking it was the library. So he had to go to daycare. I call it the activity center. He LOVES it! The bus picks him up at 7am and brings him back at 3. They have a lot of outings, go out to lunch etc. I just had a conversation this moring asking my friend if she thouht his disease is really apparent. You see since we are with them everyday we don't notice how un- normal they are. Un- normal becomes our normal. I knew I was really kidding myself. Now I'm trying to ldetermine if he's ready for a nursing home . My attorney said we keep them a year longer tan we should.!
Joan--If the funds are available now, you may want to consider sending him more than 2 days/week. My husband used to go 5 days, and it was a great help to me. I'm sure you can use all respite you can get. It's great that during these economic times, Florida has funds available--our state has none and I paid $82 per day.
The funds were not available for a long time, and won't be again for a long time, which is why I am going to take them. I have no funds of my own to pay for it, so there's no way I am going to refuse. 5 days is too much for him. He has an activity on Monday, which he loves. He has another activity 2 Tuesdays a month. I figure maybe 3 days on the weeks he doesn't have the Tuesday activity. He tires very easily, and I'd rather give him the rest time at home a couple of days than have him rebel and refuse to go at all.
He's not a problem at home - he sits in his lift lounger and watches TV all day, but I'm always on edge when I leave him alone, because he's a fall risk, even with the walker, and unless I call to check on him, he forgets to check his glucose levels. Unless I write everything down specifically, he forgets where I am, and forgets what to eat.
As I am writing this, I am hearing him shaving in the bathroom. I told him twice that he had to take his blood and EAT before he shaved. In the time it took me to write this, he forgot what I said. {sigh} :(
I beg to differ - read all your previous post of how his behavior and demands has you stressed. Read back to what your family told you. That little statement sounds like you are trying to minimize the situation and please do not do it.
I agree with his other activities the 2 or 3 days will be a good start. I think anymore and Sid will definitely nag that you are trying to get rid of him or something like that.
Joan, I agree with Charlotte re the "he's not a problem at home". That isn't what is coming through in your blogs. My experience was that I didn't fully comprehend how high my stress level was until after I placed my husband and saw what life was like without the 24/7 responsibility. I had the best doctor's report since pre-dx and was able to discontinue a medication for a condition that apparently was caused by caregiving stress and left after placement!
What I meant about him not being a problem at home is that there's no chance of him getting up and shadowing me or wandering or pacing. He can barely move.
Marilyn is so right about not realizing the stress level until it’s lifted. I mentioned in my post from Chicago that when everyone else took care of him at my sister's, I collapsed into bed and napped.
The case manager is coming on Friday to assess him - it will be very interesting to hear her perspective.
Joan, you've been advising "Sooner rather than Later" since the beginning. The stress is different after placement, but it's still there. I was able to get away this fall on a fairly long vacation and it wasn't til I became so much more relaxed that I realized how stressed I'd been. Yes, you are under a huge amount of stress, so listen to all of us, as we listen to you.
Joan, With regard to day care. At my husband's visit to the neurologist in Jan. 2010, he mentioned that I should look into day care. I told him that Bruce wasn't that far along to go. He looked me straight in the eye and said "yes, he is. Do it now while he is still social."
I really thought he wouldn't go but he did. It was difficult at the beginning because he would constantly ask the aides when I was coming to get him. It did take him a good 6-8 months to become comfortable there.
My husband has been going now for about 18 months. I started with 2 days, then 3 and for the last couple of months he has gone 5 days a week. The VA covers the fee otherwise we couldn't afford for him to go.
deb, I can see the exact same scenario for us when I try to get him to go to daycare again. I am hoping that he adjusts as well as your DH seems to have. He still is very social & tries to talk to anyone who makes eye contact with him when we are out. I plan on starting him 2 days a week. We have a Veteran’s home 10 minutes away , but they don’t have any daycare programs. The facility I plan on sending him to told me that they were looking into getting VA approved & if that would happen I think it would cover our cost also. I plan on doing this next month so please say a prayer that it all works out.
This came at such a timely moment for me. One of the group members told me about this website. I am caring for my husband who is stage 2 to 3, depending on the day. I have been so stuggling with trying to decide if I can really tell how he is or if I am just filling in the gaps because we have been married for so long and I know him so well. I still haven't decided. At the moment he is home...is not incontenient, has delusions and some time at night hallucinations, he is getting somewhat crankie but not aggressive, he gets worse at night. He will eat what i give him, can feed himslef but not fix his own plate, will dress himself but his hygeine needs assist. My 19 years old grandson lives with us and helps to take care of Gpa when I am at work. What I have begun to do (again), is try to get out budget in line. We do not have nursing home insurance and I have no idea who I would pay for him to be there full time unless I were to sell everything we own. I have investigated the VA but that will also cost. There is a local nursing home that provides a 9 hour day care for 50$ a day and i could do that, if i can get the budget down to where we just live on my salary. I get so depressed and impatient. Our children do not live close and are not any help. i have given up on them. Thank God for Grandson John. And thank God I found this site. maggie Honnold, Casey, Illinois
I started a new thread to welcome Maggie - please post welcome messages to her under "Welcome to Maggie." I moved Divvi's to that thread.
Our VA hospital doesn't have a day care either. He goes to a VA contracted day care. I spoke with a social worker at the VA and she gave me the names of day cares they had contracts with that were closer to my home. I then checked them out and chose the one I wanted. The VA did all the paperwork and faxed everything to the center he goes to now.