Reading these posts the tears started to flow I have always been an emotional person but makes me realize that even through I feel I am doing fine it is right below the surface. I so relate to all of the above comments and can empathize with all of you, I am right there with you. Lisa turned 61 in April and has been in care for just over a year, July 14 2015.
Anorthendboy in the beginning I went everyday and was told the same thing need to come less so she can adjust and too hard on me so need to take care of myself. now I try and go like you around 4 times a week. However I work that around my schedule more now rather than hers. In other words if there is something in my life going on I will visit around that rather than having my life always revolve around visiting her.
Like all of you The changes lately I have found difficult they just kind of happen and it becomes the new norm. A stage where more physical issues are evolving Incontinence, the ability to feed herself, instability, she can still walk in fact that is what she does all day but much more unsteady.
Right now I am trying to decide should I go and see her today, I have been there the last two days not much on my plate today but I am tired. She still recognizes me and is always happy to see me but the recognition is more a feeling of comfort rather than really knowing who I am. I have also decided I am going to do everything I can to make her as comfortable as I can, we are lucky that we can do this. I have a wonderful lady who sees her an hour in the morning and in the evening and another one that goes a couple of times a week. Gives me another level of comfort knowing that if I am not there someone else is watching over her.
Even though we are all at about the same stage of our journey everyone's journey is different. Sass you still have a young family to worry about, lindylou you have taken on the courageous path of carrying on this journey at home, Sass you still work full time, you see we all have differences but we are all in this together and are feeling the same emotions. I feel very fortunate I have been able to develop a life outside of the Alzheimers world this has helped me to cope. I am no longer living it 24/7 I now jump in and out of that world. It is not forgotten, it will never just go away, rather it has helped form who we are today. In the very beginning, just after diagnosis we had this discussion, in fact we had it many times, she was adamant, that when the time came for her to be in care, I was to start life again, this has given me strength to do just that, knowing truely that this is what she wanted. A wonderful woman, if you love someone you have to love them enough to be able to let them go. She did that for me. The tears are still flowing as I write this.
Rona, I don't think there will ever come a time when the tears aren't just below the surface. Even though we learn to go on without the one who is the other half of us, and learn to build a life, there is a part of us that will never quite heal. My social worker likened it to someone who, although he/she recovers from a heart attack, and goes on to live a long life, there will always be some scar tissue left around the heart. I feel like I'm operating with one leg, one arm, and half my heart missing. Like you, as I'm typing this, the tears are there.
I too am struggling with how often to visit my husband, who has been in a Memory facility for 4 years. For almost all of this time, I've gone almost every day, but now I feel depression setting in and this constant weight of grief, loss, sadness, and depression has made me too want to just hide in my house. I've come to the realization that he does not often know who I am and is content in his little world there. That's given me permission to visit less often. So now I go about 4-5 times a week. I don't feel guilty when I'm not there but I miss him so much that the only time I feel the weight lifted off of my heart is when I'm out of town. So, I go to visit my kids a few times a year ... and try not to drink too much at night ... and rely on sleeping pills to let me sleep at night.
Fiona68 We're no doubt facing the greatest struggle imaginable, and I feel what you're feeling. It's said, and I believe it's true, that the caregivers/loved ones are more at risk, and are dealing with much more heartache, etc, than are the ones with the disease. That's why it is absolutely essential that we recognize/believe that, and learn to not only look after ourselves, but also go on to build a life. We have much more inner strength than we give ourselves credit for, and it is this strength that allows us to go on and not just exist, but live. Give yourself permission to do whatever you need to do in order to accomplish that. Lastly, remember - you're not alone.
Really rough day after visit with my Sylvia. She's taken a further downturn; recognition of me fades in and out; she shouts in anger a great deal; very upsetting to see. Not sure how to go on from here, in terms of visiting and trying to relate to Sylvia. I know that what's manifesting is the disease, and that the incredible loving woman I remember is still in there somewhere, but the hurt and heartbreak is overwhelming.
I hear you so hard to keep going and watch the decline But I find it easier now than in the beginning when I use to go and she would be yelling pounding on the windows, following me when I tried to leave calling me all sorts of names. Now when I have to go I tell her I will be back soon and for the most part it is fine she is easily distracted.
Rona, You're right about it being easier to leave now. I used to have the same difficulties early on when it came time to leave. Sylvia would try to follow and beg me to take her with me. Now she's just unaware, and it's almost like it doesn't matter if I'm there or not. In it's own way, the unawareness is just as gut-wrenching.
I agree with you Rona and anorthendboy about how leaving now is easier, mostly because he is unaware most of the time. In the beginning, it was awful because he hated me for putting him there. He didn't think he needed to be there and thought he could do everything on his own. He no longer could understand how much he was actually forgetting and also how angry and agitated he was, scaring our son and making him not even want to come home. So, there I am, in a no win situation, making the decision to place him. in the beginning, visits were awful, because the second he saw my face, my husband would get this angry look on his face as he looked at me as the one who put him there. My husband was very non-verbal by the time he was placed so he didn't have ability to verbalize what he was thinking and feeling, he could only emote. And emote, he did, for many months. It's been a tough road and it's disheartening and sad when I go now because he doesn't seem to remember me any more.
Fiona68, I used to drink more than I do now. I was getting really depressed so I went to the doctor. I'm on antidepressants to help. I just went to the Dr the other day and was placed on a second one because I still was finding it hard to just get up and face the day. That's kind of necessary when you still work full-time. I also just never wanted to do anything including things that I used to find enjoyable. Fiona68, I like to hide in my house too! But I know it's not good for me to hide out here all the time. I'm hoping this new medicine will help me get out of this funk i'm in so I can attempt to get a life outside of alzheimer's.
My Sylvia is now in a wheelchair, but after getting over the initial shock and sadness, I realize it's the best thing for her. Obviously it almost totally eliminates the risk of falling, but also, she has adapted to it quite well. It now allows her to better participate in activities/exercises, so for that, along with her still recognizing me, I'm grateful.
What stage would guess she is in? Using the 7 stage method. I think my wife is in five. She still thinks it is just a little memory problem. She is very dependant on me. I have my own chronic pain problem. Makes it hard to be the 24/7 caregiver.
From the comments I've read, I realize I should probably be posting here, since my husband is in residence. True, I'm no longer in the thick of things, so all I can do is remember how difficult it was & sympathize with the ones who are still dealing with the day to day responsibilities & maybe offer some ideas on how I handled certain situations?
I'd like to know from the ones who have placed their spouse, how well they coped with that decision. My husband declined very quickly after he had pneumonia in January. My family was very concerned about my health because I was getting sick. They had been telling me for months he needed to be placed in a private facility. He is on a waiting list for the public long-term care which is subsidized, but it can be a long wait. I wasn't ready to place him & also I felt I couldn't really afford the private, so we got a financial advisor to look over our finances & he said if I was careful with my expenses, I could manage the private - of course the subsidized public would be better financially. About a month before I placed him, our social worker arranged respite for me - we placed him in a facility for 3 days & nights. He did fairly well there & after he returned home I decided to look into placing him in a private residence. The one I chose is close to our home & only had one room available on the locked memory care floor at that time & I knew I had to decide quickly because she was showing the room to others - I would have been on another waiting list had I not taken it. It was the most difficult decision I've made - I felt I was discarding him..... that I hadn't done enough for him. But, I realize it was the best decision I could have made. I cried everywhere for the first 2 weeks - I've never been comfortable crying in public, but I couldn't stop it. I cried at the residence when I visited him, cried while driving, couldn't get out of the car in the parking at the mall because I was crying & then cried again while I was shopping & of course cried at home. Then there were other issues once he was in residence, but I'll keep that for another time.
Nicky I can relate but what we feel is guilt and guilt is a useless emotion. I too was being told for quite a while it was time to place but so very hard to do. One of the best pieces of advice I read on this site was your loved one is never ready to be placed it is when the caregiver is ready. For me I knew I was ready I just could not deal with it anymore, it wasen't so much the physical work but more the mental anguish. I was an emotional wreck. I tried, daycare, I tried respite, but everytime it was a battle to get her to go then when in daycare I would just come home and sit exhausted, then pick her up and she would be all over me again it just was not worth it. She was on the list to be placed for I think 7-8 months I felt if I put her on the list that helped me to keep going knowing there eventually would be a change. Finally I arranged a respite stay for a week during that week I went to my worker and told her I just could not do it anymore I could not bring her home. I got a call later that week that she was placed.
I would visit everyday and those visits were not easy. Guilt you bet but after years of being the caregiver I knew that if something didn't change I was going to go down. It was just me no family close just me. So we are coming up to 16 months now she is doing ok some good days and some not so good days. I visit about every 2nd day but it is now around my schedule, Our visits are good but I still find them hard, hard to watch the continual decline. I have developed a life outside of Alzheimer's and it is good. I will be with her until the end but am continuing with my life that is what she wanted for me and that is what I am doing. What else can we do life should go on.
I know I did all I could and will continue to be with her for support and love and will continue to be her advocate, doesn't matter how good a facility is things do fall through the cracks. So Nicky, like me you know you have done everything you could for him, I know others will have told you that, now we both have to make sure we keep that quilt at bay, locked up somewhere and go on with our lifes.
Nicky, dear, placing is so, so hard. I cried like you - everywhere. Sometimes it just happened, I didn't know I was going to cry, and then I had to deal with the embarrassment as well. My husband has passed and there were many bad times, but placing him tore me apart the most. You aren't alone in knowing it was the right thing to do, yet feeling like a horrid person for doing it.
Every time I went to visit I had to put on a happy face, not only for my husband but for the other residents too. They don't do well with emotion and sadness. Along the way of plastering this happy face on, I began to feel better. Not normal. Not happy. But not crying so much. I think I actually went 18 months and the only time I cried was on our wedding anniversary as I was leaving the unit. I mentioned it to the nurse letting me out of the locked door and then burst into tears. She held me until it subsided.
Maybe it is Stockholm Syndrome. Maybe it is acclimation. Maybe your body just runs out of tears, but it does get some better.
He's been in a nursing home for four years now. Physically he's still strong as an oz but mentally he's declining. He also walks constantly around the facility.
I was in visiting him last week and was tiding up his room and putting his pictures back on his walls. He had been evacuated with the wild fires. I guess I was bugging him cause he said to me let's go. I figured we were going to walk around the facility but instead he walked me to the front door and opened it and said it was time for me to go!
Nicky, you don't have to talk about nursing homes here. That's not the idea of this thread and I know that because I created it.
Rona, that's how it happened for me. I put Dianne in respite and when it was time to take her back I said I couldn't do it anymore. Within a week she was placed.
That was almost six years ago (wow) and she passed away after being in there for just over three years. I"m still months from three years after she passed and there isn't either a shred of guilt left, nor any interest in what used to be a subject.
I went through more pain and misery for her in this disease than any other thing in my life and that's enough validation for me.
I went to the meeting we had at the respite home to sign papers and talk about crisis placement. Then I got into my car and cried like a little baby for a very long time before I was able to drive.
Somewhat like Amber's husband, my wife didn't know where she was or what was happening. She couldn't communicate in any meaningful way. If she could have, it would have been much harder on me to place her into professional care.
There are no right or wrong answers about this topic.
I'm in Kitchener-Waterloo Nicky. I saw you're in the Gatineau after living in Timmins. I've never been to Timmins but I've been to Ottawa and the Gatineau area a number of times. That's where I learned about beavertails.
edit - btw, I meant you can talk about residency issues in more places than this one thread.
Wolf, you're in the same area as my son - he lives in Guelph. Both my son & daughter graduated from the University of Guelph. My son stayed in the area & my daughter joined her boyfriend, now her husband, in Ottawa where he attended university. They settled in Gatineau since the housing is more affordable & both work in Ottawa.
Rodstar - I think he had just had enough of me fussing with him and his stuff!
Nicky - Canadian here too BC in the Cariboo in winter and on the coast sailing during the summer months. I have a new partner but will never stop looking after my hubby. He comes first. Just to let you know there is life after this horrible disease.
A few days ago & I received a call from my social worker telling me there was a bed available for my husband in a long-term care facility - it was very quick - a call one day & he's in there the next. He's been there 3 days now. OMG - I was not expecting such a flood of emotions..... I knew this was coming, thought I was ready...... here I go again back to those ever consuming emotions.....I'm finding this so difficult because I know this is the last stop..... I feel I'm starting over again - just when I had managed to start feeling a bit better a few weeks ago. I'm finding it almost unbearable realizing he needs to be in LTC at 67 yrs, while seeing the majority of the people there that are 10 to 20 years older than him. Of course, we all know how depressing & sad a nursing home is..... certainly not a mood lifter. I just want to get off this damn emotional roller coaster ride - who in the hell bought me this ticket anyway....
Yesterday, I went to my favourite exercise class with great music & lots of energy, the 1st one I've been to since he's been in LTC & I almost left halfway through the class because I came to tears 4 times - I thought of him constantly, just couldn't get him out of my head - kept seeing him sitting there in his room looking so sad & alone..... I feel I'm regressing..... I just joined the gym a few weeks ago & I didn't experience this - the classes made me feel good.... I will keep on going because I'm sure I'll enjoy the classes again.
I actually feel bad sharing my emotions, when I know lots of you are still in the trenches caring for your spouse at home.... I realize I'm getting a break from that life style of full time caregiver - and I know full time caregiving is more difficult than what I'm experiencing, well perhaps I should say it's a different set of emotions. Thanks for allowing me to vent.
I remember all these things Nicky. My wife was much younger than most of the people in her locked up ward. It was awful in every way although the place was nice and the staff really did try.
Then we're doing something normal and yet nothing is because these massive things are going on. I don't think it's fair to say that placing means you're getting a break. I think it's just a different variant of the anguish. We're not being tested - they have a disease which increasingly deteriorates.
so glad I found this. It was kinda silent for awhile. My husband has been in care center for about 3 years. It is close and I can go once or twice a day. He is unable to walk or take care of himself. His short term memory is gone, but we can still visit about the past. He know people--or most of them. He doesn't realize that he can't do things, I read the name of it once, but only remember it started with on o,
He tells me if I would only bring home, he could everything for hinself and help me. After 3 years, it is hard not to believe him. The tears and guilt come at such unexpected times.
As Wolf says, these are tough times/things to go thru. I never thought it would happen to "us".
Ditto to all the above. Lisa has been in care now for over 16 months and as wolf says it is a different variant of anguish. The beginning was very tough I was there everyday and use to think why do I put myself through this everyday the same she knew enough to be angry with me so when I visited I would get verbally attacked by her but then I would go back the next day and do it again. As things progressed no anger now just greats me with I love you and you are a nice man still says she should go home but really does not know who I am or what home is or means. I visit now 3-4 times a week the visits are usually pleasant enough and just get one of the workers to distract her while I leave. So not as hard but still have the feelings of quilt, why her, why has she been condemned to this life while mine goes on. Hard to watch the decline but Nicky it will get easier. It is ok to feel the emotions you do, it is ok to cry, those feelings and emotions need to get out. Hang in there.
Nicky - on to the next set of raw emotional upheaval. This is where we get the name of "Married Widow". They are there but we are on our own even more with them not being home physically. The first few months will be really tough but after a while you find a rythmn that works for you.
There's not right way or wrong way dealing with this next phase but it is now important for you to spend time looking after you and getting your health - mentally, emotionally and physically better now that you're no longer being the 24/7 caregiver. It's OK to be selfish and Look after yourself. Don't give this disease another victim.
Here are links to 2 articles in the New York Times. (Both apply to the U.S., not Canada.) If the links don't work, go to the nytimes.com and search. BTW, the Times allows non-subscribers 5 free articles per month (quite stingy), so it you can't get past the paywall, let me know and I'll figure something out.
The first story is about nursing homes that are evicting residents because their Medicare coverage is ending and they are being switched to Medicaid - "Complaints About Nursing Home Evictions Rise and Regulators Take Note."
The second is advice about how to fight an eviction - "How to Challenge a Nursing Home Eviction, and Other Tips."
No one has posted her for a long time but I will now.
Today marks 4 weeks since placement. I have gone through emotions that surprised me. First I felt free - free to have a life. Then the anger and resentment left leaving my feelings towards him as a wife towards her husband. There have been times of tears when I realize he has lost what freedom he had left, forever to be locked in a memory care unit for his own safety.
Times when I think I am rested I could handle him now. Saturday I brought him and his laundry home for 5 hours. I think he is at that place where the MH is no longer home (he didn't even want to sit in his chair) but the facility is not home either. We went to lunch, he got to visit with people in the park, he got to feel a little 'normal' for a short time. After 5 hours of repeating and/or saying nonsense stuff I was ready for a break. Thankfully when we got there they were serving dinner so it was easy to sneak out.
He seemed happy to see his new friends, especially the women! I am told he flirts with them and helps them when needed. One day as we were returning a lady was trying to escape and they could not distract her. Art grabbed her arm, turned her around talking to her and went walking down the hallway - my chance to sneak out.
I am waiting for the time he won't ask why he can't come home. I keep telling him he is there to give me 30 days respite. I am glad he can't count the days. I hate lying to him. I hate this disease - Alzheimer's Disease.
I laid in bed that night looking at his empty side reminding myself he will never be back there after 47 1/2 years. I have thought about bringing him home for a night but I think it would be too hard on both of us.
I don't feel guilt, at times just overwhelming sadness that life has changed like this.
I hate sneaking out. I wish I could give him a hug, say I love you, give him a kiss, say goodbye and leave (like when someone is in the hospital) but I can't. When he is further along I will be able to but right now I can only have someone distract him and sneak out.
Hang in there Charlotte I remember those times it will get better. Just remember he is in the best place for both of you. It is hard and still is after over 2 years of placement. Your new life will unfold and as time passes he will be come more and more settled.
Well Charlotte, I haven't posted for a long time either. Thought for awhile we were getting into a good routine but it was fleeting. Things go from bad to worse, not necessarily that he is worse but that I can't handle all the responsibilities. I am beginning to fold. Yet, if you just met him and talked for a few minutes you wouldn't think anything wrong. I feel guilty talking to the kids, they are to far away to help anyway. I had to leave the house today, to keep from shooting both of us, then when I finally came home he wanted to know why I didn't get something. Because I didn't think of it!!!!!!!!!! So tomorrow, I have a 10am meeting and an appt to have a part put on the car. I can drive the truck and he can take the car in -- but then he'd have to wait for me - doesn't want to do that. If I drive the car, I can't get over there till 11am, just when they go to lunch. So it looks like I'll have to drive the car, attend my meeting, go by walmart and pick up a tire for the wheelbarrow, then Lowes to pick up some lumber - but that takes the truck so guess, I'll have to drive one with one hand and one with the other, or get a chain and tow one. I don't think he knows how to get to the car dealers anymore. I asked and he said, well I've been there before. We have to have both vehicles in town tomorrow so not quite figured out how to work it. Maybe take the car in very early and ask them for a courtesy ride to my meeting - then see if someone can drop me off after. But that means I'll have to wait for it - and/or go back later with the truck to pick up the lumber. Would I feel better if he was put someplace? I don't know, can't even imagine what that would be like. Will I survive these next few months? Good question. He is the ultimate procrastinator, even in his good times. Used to be his joke, now he just forgets as soon as it passes between his ears. He still says he has a little memory problem, doesn't he?? Do I think anything more is wrong?? I've tried to say well, honey, it's a lot more than a little memory problem - you have lost much of your memory. But 2 seconds later he's forgot about it.So why bother even saying anything. We are still working on the house, I hired a guy to finish it up but --- things haven't gone well. Told him to just leave for a couple of days, come back Friday and I'll can see where we are. I give him instructions to finish the stairs, Hal contradicts me - not once, but almost every time. Need the bathroom window fixed, he says it can wait. Need to get that heat tape on the pipes, don't even care if they have to cut the back of the cabinets out now -- its cold and freezing at night ----- but he can do it, I'm just too impatient. He'll do it when he has time. Makes it hard for anyone working here to know what to do. Thanks folks, just had to get it out, if I start crying I won't stop and they'll have to put me away.
hugs oakridge. I know the feelings except I just got things done and my hb said nothing.
Today was a horrible day with him. When I arrived his CPAP was not there. Found it in the drawer taken apart. When I picked it up water came running out into the drawer. I was not happy. He has never used water in it. They said he must have put the water in and taken it apart. A big NO on the water - he wouldn't even know where to put it. They said 'well it hasn't been working right and he keeps taking it off'. Duh! With the water it fills the mask up with water and then he is breathing in water (I didn't say that to them cause it didn't come to me until later). I couldn't get it to work so came home and called the VA. A trip next Wednesday to Walla Walla sleep clinic to get a new one. How fun that will be - not.
I have noticed how much more tired, confused and emotional he is when not wearing it.
He had a dental cleaning this morning which went well but they found a small abscess above the eye tooth that is an anchor for his bridge. As the dentist told him 'he popped it', but then the hygienist stuck a needle into it to wash it out. That was not fun, his legs were crossed and tight - not very gentle in my book. He gave a prescription for an antibiotic so went to Walmart to fill it. Walking in I noticed from the back his pants were wet. I am thinking it happened when he was tensed up at the dentist. So, despite not wanting to I brought him home - I still had one pair of pants at home. By the time we got home they were wetter but thankfully the car seat was dry. I had him shower and put clean clothes on. Checked his 'butt' crack, which they are told to watch, and it was raw. Also, his groin was but thankfully not on his testicles yet. I slathered him down with the diaper rash creme. I told him if he keeps having accidents he will have to wear a diaper and his comment 'oh well'.
We went out to DQ for lunch then picked up his Rx, then took him back. For the first time he was crying cause he didn't want to stay. When I left he was still crying. He didn't try to follow me just stood there in the hallway crying. I don't know if being so tired made the attitude difference or just being so long. He asked how much longer he had to be there and I told him 2 weeks, that he had only been there 2 weeks so far. I hate lying but know it is necessary. Tore my heart apart. I tried to distract him but it wouldn't work and all the aides were busy, plus they were a little upset because I was upset about the CPAP.
I am waiting for the nurse to call me - they were in a meeting when I left.
I sometimes wonder who feels the worse, them or us. Yesterday was a turning point for me, should say downturn. Was a very rough time. The guy who was supposed to come this morning, and pick DH up and go to town for lumber, didn't. So I cancelled my appt, took the car in and we waited till it was done then came home. I'm going to put a blanket over me and maybe stay here for a week. Will tell our workman it's over. Maybe next spring but doubt I'll have him back. Nice guy but soooooo slow and always forgets or some such but I have reached the end of my rope. Simply cannot handle anything else or someone else in my home all the time. I've worried and stressed over a year now and he's still not got done all he was supposed to do. Nice guy, but I've reached the end of my rope. DH is much worse than people think because just talking to him a few minutes he sounds normal. Spend any length of time with him and you know something is off.
Well nothing new, you've all been through it. No sense beating a dead horse. It isn't going to change. Hope you get your problems with the care facility cleared up. I've decided I must come first for awhile. Won't do anyone any good if I am sick. Don't know if physically or mentally but know something has to give. Think I'll lock the front door and just hibernate for awhile. Cheered, we all need it.
Nurse has not called yet. No surprise there. Maybe later today.
Sorry about the work not getting done. Sometimes nice does not mean efficient. I think the choice to take a break from the construction work is good as long as anything left not done does not affect your comfort or safety.
I couldn't stop crying last night and tears come easily this morning. I sure hope he has forgotten about yesterday and resumed his life there. If he went to day care today that should help today. Wish I could win the lottery, then I could buy a house and hire 24 hour help!
I am going to switch to this thread since he is placed now. Had a good visit today. They still had not found his missing clothes which I let them know I was not happy about. I did have 2 pair of clean socks and underwear. I took in an additional 5 pair of socks and underwear and 3 t-shirts. No sign of his slippers. They said they are talking about using mesh bags to put their clothes in so they won't have to sort them. I reminded them not to worry as I will be doing his laundry for the foreseeable future until they figure it out. So I will go again on Monday - planning every three days for now.
Since my wife entered a nursing home 5 weeks ago, I have no sense of relief, just a feeling of guilt and sympathy for her. I am able to make decisions for myself, she is unable to. I will always ask myself if it was too soon for her to be there. No matter how good the nursing home care can provide, it cannot replace the one on one care of home.
I know what you mean. There are those that will go daily and spend much of the day with their spouse still giving them the care or supervising it but then are able to go home at night and sleep. What was the reasoning in placing her? Keep that in mind. Being their advocate can be just as much work as doing all the personal care.
How far along is she? How many years since diagnosis? How many years have you been together?
If you have read my journey since first placing my husband last September you know it is not easy on either of us. I went almost daily at different times because he was not getting the basic care I felt he should be getting. I removed him after 6 weeks. I kept him home until February and in that time I knew it was right to place him. That place didn't work out either so I moved him 4 months later. I had him home 5 days before placing him in the new place and, again, knew it was right. Personal care was not the big problem, but him wanting to take off - I was exhausted going after him. This third place is only 3.5 miles so I can go every day if I wanted to but that is too emotionally draining on him and me. As a result I only go every 3-4 days. He still gets angry when I leave since he doesn't understand why he can't come home no matter how much I tell him. He is adamant that he does not try to take off.
As for relief, I did when I was going every day the first placement. The second one due to weather getting there since it was 65 miles away was a problem because I couldn't check on him. Then as I saw what was going on, it seemed I was battling all the time with them for basic care. And, when I left he got angry and started crying. I was exhausted from the advocating. Now he is close, they know the history with the other two places, so know I will be checking. I can rest and now find I am no longer enjoying being alone as much as I did the last few months. I guess this is another phase.
When I checked out a place to try for respite care the manager said if I allow them to provide the exhausting personal care I can go back to being the loving spouse. At the time I was so exhausted and angry I didn’t think the word love would enter my head ever again. He died before I could arrange the respite care. Now I wonder if I should have placed him sooner because when someone made a comment (Facebook not here) I didn’t like after he died I went all momma bear like crazy and realized that love still did apply after all.
The good old days :) I came here this morning to read about what others have done and how they have handled it. Imagine my surprise to see my name almost 2 yrs ago. I would not have thought I was having those feelings that long ago, it seems like it's more recent. I thought I was in bad shape then. A year or so ago the doctor told me to look to placement sooner rather than later - of course he says he will fight it to the death and I believe him. Now the doctor agrees, he would not do well in a facility - but doesn't have an alternative.
I moved to the bedroom upstairs a few days ago. After a particularly rough time with him that sent me over the edge. He has no memory, long or short term, but when I talk to him he says he remembers me. Which he does -- but to him that's all he needs to know. I really think - somehow - in his mind he is the same person he always was. Last night we had another argument - which really isn't an argument - just me ending up screaming ---because you don't remember. He now says, I've convinced our granddaughter he's senile. Told him, I didn't do anything, anyone who is with him for anytime knows he has a "memory problem", which is how he always terms it, a little memory problem. Two days ago I finally just let loose with because you have Alzheimers Disease and the only reason you are able to live at home is because you're not violent and don't try and run away. I lay awake for a long time fully expecting he would find some way to kill himself after hearing that, since he's always said he would - and trying to decide what to do. But he didn't even remember. I love to sleep upstairs, always have. It's quiet, and the sun comes in bright through two big windows - as opposed to the bedroom downstairs with one north facing window. I've always said it feels like sleeping in a coffin but it was the room he wanted for a bedroom downstairs and would never accept anything else.
The bed upstairs, which we just use as a guest room now, is only a queen, not really big enough for two of us. I don't know what to do. I could put a king up there but truthfully, I really enjoy the peace of being able to go to bed, and go to sleep, then waking early with the sun. If I continue like it is, it will be the end of our marriage in a way, so far, we still act married, ie, sleep together.
He is reusing to go for his physical tuesday, threw such a fit you wouldn't believe, nothing is wrong with him so he doesn't need a doctor. Told him she would not continue to prescribe medication without seeing him at least once a year and he said he'd get a new doctor. So yesterday I asked if he was going to his appt on Tuesday, no, cancel it and tell her he would reschedule it later. No -- I'll cancel it, but that's it. I'm not going to play games with you anymore. When you run out of medication you'll either decide to go or die, your choice. Truthfully, he takes nothing that would cause him to be terminal...and if it did it might be more of a blessing that eventually having to force him into a home. Guess I'll go read a few more back pages and see what others have done. We've had an increase in Covid-19 deaths but mainly in nursing homes. A piece on the news last night was a man whose wife was in a home and he could only talk to her through the window screen while she was in bed. He is trying to force new legislation to let couples in this situation be together. I understand both sides, but I really feel like when the person is terminal anyway - there should be some allowances made. He said it is a small facility just 10 people. I know that the majority of deaths here has been in nursing home, very few young, normally healthy people -- mainly a few who have travelled to other countries.
Many of the cases involve people working in meat processing plants because the conditions are horrible and the owners would never consider doing anything to protect their employees. They even consider this a good thing because they hope to get liability protection and with the increase in unemployment they know they can replace employees easily.
For terminal cases it would be nice to figure out how to safely visit. Probably harder for small facilities since they would need to be able to isolate the residents who could get exposed. I would be upset if my wife caught COVID-19 from someone visiting their spouse or parent. So far my wife's facility has had only 3 cases and no signs of it having spread, but they just did widespread testing yesterday. My wife called me to tell me she was tested. To confirm that she was telling the truth I asked about how far did they go, she can the correct answer. And no window visits, they are not allowing for anyone who isn't staff on the property.
I am sorry it is so hard with your husband. One of our previous members (I don't remember her name here, only her real name) has a mother who fought for years against moving into either assisted living or independent living. She has Parkinson's and the house was a danger. After finally convinced, there wasn't money for full time in-house care and they needed to sell the house to pay for her care, she loves living in her new home.
Where my husband is now, which he was placed in a year ago, he fought going. But once there he was fine. You might look for a small home like setting (Rosetta are all built like a big home) vs an institutional setting. IF you posted about it 2 years ago - then it is way past time. Your health is more important than him. I know you say you will probably die before him, but then who would be there to advocate for him? In the meantime, enjoy your own bedroom. Don't feel guilty.
It is small - only 16 residents. I really believe those are better. I can only visit through the window screen. I have not been there since our anniversary on the 16th. Even though it would not be the worst thing for my husband to get Covid 19 and die earlier vs later from AD, I realize not all the families of those there feel that. And the staff does not want it either. That is probably why they have all agreed to the strict guidelines on what they can do when not working. The governor has ordered all facilities have to be tested - both staff and residents - by June 26th (I think). I can't imagine Art being OK with that swab stuck up his nostril.