I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Whether you have placed your spouse or are planning on placement, or just thinking about it, I think my story will be a help to you. Please post comments here.
Thanks for this, Joan. I'm meeting with business manager of dementia unit of NH on Wed., to try to arrange finances. They have a bed for DH on Monday - this was rather quick; and he will be going from home - not hospital. I have had to arrange all of this alone, and will still have to apply for medicaid the day of placement. Outfront costs are horrific -but I'm counting on qualifying him for medicaid. If not...well...homeless me, I guess.
I have no idea how I will react when that time comes next week. I only know I am so tired, so weary, I can hardly put one foot in front of the other. We had a wonderful marriage too, and my heart breaks every time I look at him now, certainly not the wonderful, funny, sensitive man I married. Now he doesn't know me some of the time. I only hope he doesn't know me next week. It will be easier for him and for me.
I'm so happy you are advancing through this terrible time, Joan. Thank you for all you have done for me and all the others who have found this wonderful place.
Joan I am so proud of you. Truly. What a tough journey this is. Just when you think you are getting used to it...POW!! the other night I sat out in my car in our yard, drank some beer, listened to music and sobbed and wailed for hours. It was primal, no one could have helped me at that point.
Vickie if there is ANYTHING I can do to help with your paperwork, if it is too much, let me know. I consider myself an expert. You WILL qualify by the sounds of it, and they will let you keep about $2800.00 a month income to support yourself, (spousal impoverishment) I feel so so sad for you, you have just been through so much and have been so helpful to us. I will be watching out for you.
I am happy to hear you are adjusting Joan. I placed my husband about the time you did. I too am adjusting. My marriage was not ideal so for me it was a relief. things are better between us as I can now go and visit and not be angry all the time as I was when he was home. I too am working my way through Medicaid. I was emotionally depleted and exhausted trying to accommodate all his needs. When I go he knows me but does not know where I live anymore. I cannot say I enjoy visiting because there is not a lot to talk about and I end up usually just listening to him talk about the past a lot of which makes no sense. I decided to get some counseling to help me through the grief process. I think that caregivers dealing with this disease have a difficult time with grief because they are still with us even though we feel and experience the loss. I had my first session today and it went well. She seems to think it will take about 6 or 7 sessions. She is encouraging me to get a massage to help with the stress. Honestly it has been knitting that has gotten me this far. Thank God for knitting.
I began to post on thread "Placement" but maybe this is the better one for the time being. Placement will be next Monday. ALF in the area will be the best I can afford. DH doesn't know what is happening most of the time. Can't be left alone. Every day he wants to go home. He needs help (physically) getting out of bed and off the toilet (when he uses it). I can't do any more. At this point I don't think I will ever be able to adjust to placement. Acceptance might be a better word for me or resignation. 24/7 help is out of the question. No family to help in the area. Like most here I am always second-guessing myself and thinking maybe I can go longer, do a little more, etc. I just can't imagine what living alone will be like.
I placed my DH 6months ago in a memory care unit of assisted living. This was recommended by hospital doctor after seizure like spells and 5 days in a hospital. At first it was a relief. After that I had all kinds of mixed feelings and shock at the costs for everything. He is doing better physically, but Alzheimer's symptoms have progressed. He has difficulty communicating. Last week was difficult. He was missing three front teeth on Monday, a permanent bridge. No one at the facility had any idea what happened. They did not even know they were missing! Three days later he had a huge bump on his forehead. No one knew what happened other than, maybe he fell out of bed. There are many high maintenance residents there and Bob is not demanding. He does not complain and is pretty easy going and happy. I have not made any changes in my life. I go every day,but I have started to cut my visits to no more than 2 to 3 hours. At this point he does not seem to miss me, but I do miss him and am lonely home alone after 52 years of marriage. His new bridge will cost more than $3000.
maryd--I'm not familiar with a permanent bridge, but it sounds like your husband's wasn't so permanent. I would think long and hard before spending that much on a replacement. Unfortunately, in dementia care facilities, anything that's not totally connected to the body goes missing sooner or later. Eyeglasses and false teeth are the most common, I think. It's not a great situation, but there are some tradeoffs we must accept once our LO is moved into long-term care.
On a lighter note, one of the ladies at Steve's ALF wears a wig (she has VaD and is very alert, compared to everyone else). It's a very ugly wig and I'm amazed that in over 2 years that Steve has been there, the wig hasn't gone missing! It would probably be a good thing if it did.
I think I agree with marilynmd. while in NH things go awry and missing. if he can eat ok without the bridge then its purely asthetic I would say. I would wait and see how he fairs without it for a while and ask aides how hes eating without it. hearing aides, teeth, glasses, anything like Marilyn says is waiting to go missing.
As difficult as Sid's placement was for me, it's not being home alone that bothers me. I'm okay alone, because taking care of him at home is what broke me physically and mentally. It's accepting that our life together is over; accepting seeing my once strong, active, capable husband sitting in a wheelchair, sleeping alone in a narrow hospital bed;knowing that he has no future - these are the things that have torn me to shreds. I've adjusted to it (kind of),because I have no choice. But every step forward for me is a difficult one.
for what it's worth Joan, you are doing far better than I was in this time frame. I understand what you mean about it not being alone.... I have my sister and family living here with me, so it wasn't being alone that hurt me so greatly either. It was being without Lynn. I went into deep mourning, for about 18 months. Like you I had no time frame, it took as long as it took. I had so many wonderful hopes and dreams to say goodbye to.....
Every step forward is difficult, but you ARE doing it. And Sid would be so proud of you ((hugs))
Vickie and Shirley, my thoughts are with you as you go thought this gut-wrenching time. ((Hugs))
Mary's. I also think you should wait on the bridge. My aunt had a bridge also. One day her daughter was looking for it, found it in the mouth of the lady in the next bed. Sometimes she would have to go check the laundry and often found it there. It may be wait and see how he does without it. Bonnie
The time has come for us for him to be placed. We live in a continuum Of care senior community so he won't be far away. I have put him there for a few days for respite so he knows and likes the place.. They have a medical center where we see the doctors, an alf, anursing home and skilled nursing home. They also have a cementary tucked away in the forest.
There is no choice, I simply can't take care of him anymore. He isn't safe with me as he is very stubborn with me and does what he wants. He can't walk without a walker and needs a transport chair when we go out. I just can't do all that he needs. My body is broken in so many ways carrying, stooping, pushing him.
Joan's description of missing the husband she once had touches my heart the most. He is a few years younger than I am. This disease has him bent over, stooped shoulders, shuffling,drooling and in diapers. Sometimes I break down and cry at how pitiful he looks. He is basically home bound and doesn't do anything now but sit in his chair and sleep. I get to see people everyday when I walk the dog, but he is in isolation at home now. We all know about the phantom visitors and family that are not there for some of us.
I am not concerned about being alone, I am already alone in so many ways. I have chosen to place him before the holidays so he will be able to have some holiday activities with his peers. I plan to participate, but don't think I will spend most of my time there. He was so depressed last Christmas. When we were accepted into this community, the first thing he said was "no more Christmases alone". Thus my reason for placing him now rather than waiting.
His dementia is FTD and is always oriented, just acts like a two year old with his ADLs. He does have memory loss. He watched his favorite football team lose again on Sunday. He commented today about how great it was that they won. I told him he must have seen a different game than I did. His quick comeback was "we'll when you have a mind like I do, you can think anything you want."
Sorry to be so long. Not anyone else to talk to about this bunch of mixed up jumbled feelings of sadness, mourning and a little hope thinking I might be seeing a light to follow for me that will bring me back into a world of MY peers minus diapers,poop, being basically invisible unless he wants something.
Thank all of you for your sharing and being here for my story.
Ps. I also am seeing a therapist. I tell him that he is my paid friend until I can make some on my own. Also going through the Medicaid maze. Everything in that direction moves in very slow motion. I have said to others that it would be a lot easier if all I had to do was just take care of him. Papers, hanging on phones listening to hours of music, red tape, the system messing up our records that are impossible to sort out. Off to shower, hope to be able to sleep and if I am lucky no disasters during the night and then start all over again at 6 am. Sounds familiar, doesn't it.
For my H it was not a bridge but there was an issue of things, costly things, going missing.
Do you have Ombudsman service in your state? They are usually through social service or senior service agencies and most are state/local funded. Even though my H did not qualify through normal channels due to his age I was able to get a representative to at least look into the situation.
You might want to look into it. Another issue for me was an undocumented fall with injury which should have been reported but was not.
Pavanne,
Although it turned out that it was not necessary, very little caused me nights without sleep like Medicaid. I won't rant here, but just want to send you good wishes because it can be a *****.
I too have recently placed my husband, and find Joan's and Pavanne's comments most consistent with my feelings----it breaks my heart when I see my husband in his wheelchair, slumped over, and realize that his last days---however many they may be, which is really depressing since there might be many since he is only 61!---will be spent in a small room, small bed, etc. We were fortunate to be able to keep him at home with 24/7 paid caregivers for many years, and I was planning to move him later this fall anyway in conjunction with selling our house, and then one Saturday morning he simply refused to stand on his own and we all agreed it was time. I had already chosen an assisted living facility closeby with a nursing home unit, so given that he was now wheelchair bound and it takes two people to transfer him, and they had a private room with a private shower in the nursing home wing, we just moved him quickly. He doesn't know the difference and has adjusted just fine. We decorated his room with favorite pictures and even one of his small stuffed ducks from his hunting days---since many of the residents are transitional, the staff comments on how nice his room looks. And it is at the end of the hall, so quiet, which he likes too. It still breaks my heart every day when I go visit----but one of my daughters summed it up well---the sadness is not necessarily because he has moved to a nursing home, the sadness is because he has this horrible disease and this is yet another stage that our family has to deal with and grieve through.
Today begins the 8th week of Clare's placement in the lockdown 32 bed dementia unit ("Reflections") of a nearby assisted living facility. As I've posted elsewhere, I did not feel guilty, only sadness, when placing Clare. This was probably due to 2 reasons. First, when I made the decision 6 months earlier to place a deposit to get her on a room wait list, I had already come to grips with the fact that I could no longer care for Clare by myself at home. And second, by having to wait more than 4 months for the room to become available, it gave me time to adjust to what was about to happen. Plenty of tears, both Clare's' and mine ... but zero guilt. Since placement, there is still sadness, but a lot of that has eased due to Clare's wonderful transition. She is genuinely happy there, enjoying the people and activities, although unable to tell me one single thing about her day when I ask her. One of my major concerns was about Clare being 67 and so much younger than everyone else in that unit. In fact, the ALF I wanted to place her in had only 2 people under the age of 83 in their dementia unit, so I passed on that one. Where she is now she is still the youngest by far, but at least there are quite a few others in their 70s and some in their early 80s who are still at Clare's cognitive level. I continue to visit daily from 3-5 p.m., a time when I am not causing her to miss activities she really enjoys and this allows me to bring her to her dining room right before I leave each day, facilitating the same departure routine each day ... hugs, kisses, and Clare goes directly to 'her table' to eat supper. I don't know if the sadness will ever leave completely. But, again, I knew this was the right decision to make, had no second guessing, and have accepted my 'new normal' knowing that this is what is best for both Clare and for me.
Vicki, Shirley - We all have Monday as the day we are placing our hubby's. Mine is still in the hospital and will be moved over to their LTC Lodge as soon as a bed is available. Seems to be a lot of members placing recently.
Yes, Amber, it does seem an awful lot of are placing our 'spice' now. After almost 11 years, I just can't do it anymore. The last two months have been horrible, both for him and for me. But the NH canceled my appt. for today- re-scheduled for tomorrow - so I hope the admit day is still next Monday. May it be a good,calm, peaceful day for all of us.
Joan, My husband died about the same time you placed Sid. A friend of mine, whose husband died in Jan of ALZ,, had to place her husband several years ago, earlier than she normally would have, for safety reason as their house had two sets of steep steps and she was afraid her husband might fall and get hurt though otherwise he was not doing too badly. So he was in a facility for assisted living and then NH for several years before his death. S always said she feels that by placing her husband, her time with him was more pleasurable though as you say it is very hard at first. Then her husband V died...The interesting thing she maintained is that it if far harder for those who don't place their spouse during and after the journey is over. She found that when V was finally released for the shackles of ALZ, though she misses him, her adjustment to the loss was easier and she takes comfort in knowing she always did the best she knew how to do for him. S is an RN. So I hope for those who have faced this agony of placement, that as time goes on, you too will find comfort, strength, pleasures and peace.