I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I am doing the best I can in my new reality. What about those of you who have placed your spouse?
Good to hear from you. I found your blog comforting. Have not placed my spouse, but have been getting things set up in the house more the way I want. And I to feel like I am deleting DH from my life. You are right it is not us, it is the AD.
As my husband's illness progressed his demands increased. For some time before his final hospitalization that lead to rehab and then ALF placement he was increasingly annoyed by any noise. Now, if he controlled the noise, such as the tv volume that was one thing. But if the noise was intrusive it was another.
The phone ringing was the worst offender, since I had already disconnected the doorbell. So, I had to manage the landline by removing the units from where he spent his time and setting the others to flash only. I had to be very careful making and answering calls too. Mostly I used my cell in my car.
It escalated to where he did not want me to talk at all.
The first morning of that hospitalization I knew that calls would be coming in nonstop. How could I manage everything with a mute phone and juggling back and forth to the garage with my cell? As I realized that this was not necessary, that I could set the phones to ring and talk in any room; the only word was relief.
I would also sit in my car and sing for a few minutes every day. Not being permitted to talk was difficult for me. After he had left the house I started voice lessons and continue with them. I can relate to your post so much. I can come home and sing my heart out, chatter to the cats- other things like those you mentioned. Relief.
With wishes for continued strength and resilience.
Joan, bless you. You have been through so much. I haven't placed DH yet, but our situation is somewhat the same. After a fall 2 wks. ago, had to call 911, to ER, sent home. Our bedrooms are on the second floor, but now, no more stairs. Got a hospital bed for him, moved a twin bed downstairs for me; our den on the first floor is now our 'bedroom'. Our dining room now has couch and love seat - everything is a mess. I am up/down stairs all day bringing things down for him. I've left most of my things upstairs, but have to be careful when I go up if he's not sleeping. Can hardly find time to take a shower! My life is turned upside down; my home is turned upside down; my finances are....well, you all know, and nothing I can do about it.
I know it will get better for both of us - it certainly can' t get much worse.
Joan, It sounds as if good progress is being made and that is a good thing. I placed my husband about the same time as you did. Although I am still dealing with Medicaid, I feel all in all it is going better. I did not have the bed issue because we slept separately for years--he on the couch and me in the bed. No amount of trying could convince him to move to the bed so I gave up that battle. I too have relief when I come home. Since placing him, I do not think I realized exactly how much I actually did do for my husband, mostly his ADLs. Just not having to dress, shower, shave, dealing with pee in waste baskets, listen to the TV cranked up so loud I could not stand it, fights over the temperature of the house, and my anger and resentment at this disease are such a relief. I can hardly put it into words. My husband has been very compliant and never really yelled or screamed at me to get him out of there. My kids are visiting so he is seeing more of them. Our relationship is better which is a huge plus as I see it.
I too am making house changes. I ordered a new couch and chair and my son moved in my old piano that was at his house and I am actually playing the piano again. It has been years and years since I touched it. Creating a new life is still in the process for me. I may decide to return to work after the first of the year. I do not know. When the loneliness comes, I focus on happy thoughts and things I want to do for me and the loneliness fades. One of the things I know I need to do is increase my social network. Most of my work friends have gone their separate ways and the other people I have met are associated with Alzheimers. Would like to connect with people who are not dealing with this disease. I know Sid has a lot more physical issues than my husband, but emotionally I was at the end of my rope. I cannot say I am riddled with guilt as some people are but sometimes that tape in my head says you should have kept him home longer but when it comes I just ignore it. I know placing him was the right decision for me. My best to you.
Joan you have no choice now but to reclaim your own life and it sounds like you are making a good start. take care of yourself so you can better see to the proper care for Sid.
Joan Thanks you so much for this particular Blog. Having placed my DH only two weeks ago I was reluctant to make changes. I started with moving his coffee cup and sugar bowl to the next shelf up and spreading out my Splenda and cup on the bottom shelf. I felt so guilty at first but then came the bathroom medicine cabinet then the shelves under the vanity. Next came the pantry where there were numerous foods that I never eat still packaged and in cans. So off to the food bank with them. Out into the garbage went leftovers that he liked and I didn't. I don't fill the cookie jar with oatmeal raisin cookies anymore as I no longer have coffee and cookies at 18:00 hrs. All the nuts from the cupboard are gone to DS as I will not likely bake anything just for me. If I want cookies I will by one or two at the bakery. Just a taste, not a feast. The freezer above the fridge is now empty except for the frozen veggies that I like and the kind of bread I like. I know it makes it look like I have purged him from my home but he is there and I a here and I need to try to move on to this new life I am supposed to build. Tonight I listed my house for sale as I find it just to much to care for and I will move to an apartment in the city where he is. I just don't want all the stress of the house. I am sleeping quite a bit more then normal but I am told that that is good as I am in need of catchup.
I placed my husband three weeks ago and immediately got sick - a cold, sinus infection, bronchitis, something - even the doctor isn't sure. So since he was placed, I've been doing as little as possible. Our living arrangement is similar to Marsh's. About 2 1/2 years ago we moved to an independent apartment in a continuing care retirement community. DH is now in a memory-specific assisted living unit on the opposite end of the same building. This makes it very easy for me to visit. I go over most days and spend about an hour with him, and I've taken him out a couple of times. It seems strange, but he was happy to move. I think that possibly he was more stressed than I realized by trying to act as if he were okay. It was a strain for both of us, for example, to eat in the dining room here, where people expect good manners, conversation, etc., given the disease. He says he likes it where he is, but he'd rather be with me. I tell him that I'd rather be with him too, but that I think this arrangement is best for both of us. He accepts that.
As far as moving his stuff in "our" apartment, I've done very little. First, I haven't felt good, but also I'm having trouble "believing" that I did the right thing in placing him, even though intellectually I "know" that I did. I haven't really grieved as I need to, mostly because of not feeling good, and I've have been sleeping a lot. His clothes, toiletries, and bed all "moved" with him, so that part is done. Eventually, I might change the bedroom he was using into an office/sewing room for me, but not for a while. First I want to stay with the changes for a month or two. When I'm thinking more clearly than I am right now, I'll make a decision about whether I can afford to stay in the two bedroom apartment or whether I need to check into moving to a smaller, less expensive one. There are so many decisions to make. I also have to admit that I'm still thinking that maybe I should bring him back to the apartment, even though the staff here and all of my friends tell me that I shouldn't.
It's all hard, and it must be more difficult for you, since Sid didn't want to go and is resisting being there.
Abby Thanks but I sure dread facing the things you have had to deal with, at least I can still hold him and make him laugh if need be. Death is so final and it my be very difficult. I know that he is deteriorating as even last night , he was unable to remember what he had for dinner at 5 p.m. One things good that has come out of his moving to LTC is that now they have all the nasty behaviour to deal with and he can't wait for me to come and visit and sits in the lobby waiting. He is on their backs about every little thing he sees that he thinks needs changing. That's bv Fronto. All behaviour and now memory. I am sure happy that I found this site when I did. I get so much advise and hugs. Well now I am off to visit him and he says I will wait in the lobby for you!! Much better relationship for sure.
Mary75*, I suspect you can see it by now. But if you are not seeing it your web browser is looking at a page it stored locally. Force your web browser to reload the page, most browsers have a reload button. Or try quitting the browser and relaunching it.
Since we moved some furniture to my wife's ALF changes to the home started with her leaving it. She took many picture with her that hung on the walls. I've made some more changes over the past 2 months, but I keep some things the same since she comes by the house on occasion and I don't want L to feel that we have removed all of her stuff.
Joan, I'm really pleased to learn that you are now starting to get on with your life. Today marks 3 weeks since I placed Clare. I continue to visit her each day from 3-5, and have already made changes in our bedroom, bathroom, and kitchen at home to make things easier for me. It just is what it is. With Clare having made such a wonderful adjustment to this new phase of her life, my sadness is much less than it otherwise would be, I'm sure. By the way, after trying to plug this site so often in my published articles, only to find the reference left on the cutting room floor during the editing process, my latest article does include a reference to this site. Clinical Geriatrics, a journal that now is only online, published my latest piece yesterday ... “Three Important Actions for Alzheimer’s Caregivers." You can Google that online journal or go to the link below to read this article:
That same article will also be published at the end of this month in their sister print journal, Annals of Long Term Care. The original version of this article, as well as copies of all of my previously published articles dealing with Alzheimer’s, may be found on my website at www.allansvann.blogspot.com.
Thanks, paul c, Joan's blog was there when I went to the computer this morning. Congratulations, acvann, on your articles. Well done! Good blog, Joan, as usual.
mary75* : I also can't get the new blogs the day Joan posts them. My DD ( who is more computer savey than I am) told me how to do it. Hit control and the refresh at the right end of alzheimerspouse address bar.
I am happy to hear that you are making small strides toward acceptance of your new living arrangements. Adjusting after a placement can be more difficult that adjusting after a death, especially if there are negative reactions from your loved one to the move. Then there is the quilt you feel because you made that ultimate decision. Please keep telling yourself you did the only thing you could do under the circumstances to keep both of you safe, and try to enjoy your visits with your husband. Take care.
I am happy to hear that you are finally starting to settle. And, I want to tell you how much I appreciate your ability and willingness to share this journey with us. You are so articulate and able to put your emotions and experiences to pen (so to speak) that it's almost like watching it all unfold on a screen before my eyes. It's painful to watch what you are going through and it's painful knowing that this scenario will most likely play out in our household, as well, all too soon. I do long for the freedom that placement will provide but I know that facing the reality moving him from his home and me will be another thing altogether. Thank you for your giving heart.
The refresh looks like a c with an arrow attached at the very end of the address bar (http// the alzheimerspouse.com et cetera) at the top of the screen.
I'm assuming you are using a windows program, not a MAC.
MaryinPA, thanks for your help. No, I use a MAC. Relaunching seems to be the key, although this was the first time I didn't see Joan's blog on my first try.