...... last Friday my husband was taken, by ambulance, to hospital - dx - TIA and pneumonia. It also appears he has once again fallen to the next plateau in this Alzheimer's journey.
This week, as much as it broke my heart, I've had to sign documents to admit him into care. I don't know how long it is going to take for admission but, while waiting, he is being held in an acute care hospital so he will transition from hospital to care rather than from home to care which I just could not do 'cuz, quite frankly, I just wouldn't be able to let go of him even though I know I can no longer physically or emotionally look after his needs.
I'm heartbroken and running on adrenalyn right now and I can only pray that, in time, I'll be able to gather my wits about me and, as the nurses at the hospital have told me, be able to spend *quality* time with my husband while others look after his not so nice needs.
If you are so inclinded, please say a little prayer for us as we embark on this next stage of our journey.
I guess, to some extent...especially if you've been doing it for a long time...you would miss hands-on caregiving. I wish you well, Bar-bra. I hope the transition is as pain-free as possible.
Bar-bra, oh how I feel your pain. Jim has been in the hospital for 5 long weeks as we search for placement. Here in Maine there is a shortage of nursing home beds as the population ages. It is so hard to not have him here, I understand everything you ares saying. If there is any upside to your situation it is that he is in acute care. Jim went into the psychiatric unit for suicidal ideations needing a med adjustment and had several declines in his physical state. As his disease progresses he is losing the connection between his brain and his muscles (parkinsonian variant of FTD). So now they cannot let him come home and cannot find a placement. I'll pray for you! Can you include Jim in your? Arms around, Susan
Bar-bra, the conventional wisdom seems to be that by the time an LO is finally placed, placement was long overdue. You've done your best to avoid reaching this stage, but now that you're there, I hope you'll have an opportunity to fall back, regroup, revitalize. Then you'll be able to continue to be his best advocate while the professionals handle the day to day care. Prayers for peace of mind. (((hugs)))
Dear Bar-bra...My dh transitioned from hospital to hn. I too believe it was easier that way. John is very mobile so I take him out and even home as often as I can. Last night we went to our sons b-day get together. In a very brief time span there were 3 bathroom and 2 choking incidents. I guess I'm trying to say that palcement was the right thing to do and that decision is reinforced whenever we are away fron the nh and it's all on me. At first I stressed that he would be lonley or bored but that is not the case. There is always people and activity going on or he can go to quiet privacy of his room. Our time together now is quality. We hold hands and watch tv, take long walks around the facility. even cuddle in his bed and take naps. All these things had fallen by the wayside because of the pressures of 24 hour caregiving. I will be thinking of you and your husband as you make this difficult transistion. cs
Bar-bra, you and your husband are in my thoughts and prayers. May you now get some rest and be able to emotionally deal with the visits to him at the nursing home. Some say it's very difficult for them, so know that we are here for you with love and hugs.
Bar-bra, I can understand your concern, after almost four years of caregiving for my wife, about two months ago she took a turn for the worse and spent some time in the hospital. Her doctor said I was not going to be able to take care of her, that she needed 24 hour care. I was able to place her in a NH close to our home and am able to visit her two times a day. She has gotten where she will not open her eyes of respond to me very often. I am glad to say the NH seems to be caring for her okay. I do have hopice and they check on her two or three times a week. I really don't know what to pray for except that she never has to suffer pain.
Bar-bra I can remember all too well the quietness of the empty house the first night my husband wasn't in it. My heart goes out to you as you enter a new stage of your life.
Bar-bra -so many here have been where you are in placement, its never easy to have to accept they wont be coming home and that we are unable to provide essential care any longer. but its the right move and his needs will be met and you will have time now to regroup and visit him under less stressful conditions. give it some time, it will be best in the longrun for you both, divvi
Bar-Bra.... I was in your shoes this past week, when I followed the transport vehicle from the hospital to the nursing home that was chosen as my husband's new home. I hadn't had him at home with me for a couple of weeks after an incident that sent him there. I knew he wouldn't be coming home this time, but I guess inside my head, hope ruled eternal. It feels so final now that he is there, in his side of the room, he doesn't seem to care. As I watched the PT and one of the nurses do an evaluation of what he can do for himself, my heart sank. How had he come this far without my understanding??? Now, it takes two people to safely get him to his bedside toilet and it looks like he's forgotten how to walk. When he sits in a wheelchair, he can't even sit back, he's so bent. It's like his back has grown into a forward curl. I can't go see him every day. I'm one of those people whose spouse was undiagnosed while he spent our life savings with day-trading. I can't afford the time and gas it takes to get there more than twice a week. This is a very lonely and quiet house, not a home anymore. Hasn't been for some time. Anyone visiting would look around and not see a thing wrong. I just try to stay busy. I know your heart is broken. Mine is too. I thought I'd be here for him until the end....I guess that meant as the ever strong and able caretaker of his needs. Acceptance has NOT been my virture. I hope they can find a suitable placement for your husband very soon. It IS hard to let go and let someone else. You and all in our position are in my own prayers. There are many here who have gone through this and believe it or not, lived to tell about it. I just know that you and I have to go on with our lives. It's hard but can be done. (((((Love to you))))) Jen.....and feel free to e-mail if you need to.
my heart goes out to you dear Bar-Bra, I too had to place my dh it was hard to do but when I see him now I know I did the right thing, he has declined so much in the short months he has been there, I am trying to adjust to the lonely house, make no mistake it is hard but we have a wonderful cyber family here and they will help you get through this, we are always here for each other. Gail
Bar-Bra - I put my husband into placement 2 months ago. There was no physical or mental reason to put him into the hospital first so I DID have to be the one (with my step-sons help) to physically put him into the car and drive to the facility. I will tell you that it was the hardest thing I have ever done or ever will do. And it has been a rough 2 months. The house is lonely and my bed is empty but I know that it had to be done and I am slowly coming to terms with it. He is doing well. Hopefully a bed will be found soon and both of you can get on with the business of adjusting and settling into a new routine. Much love and hugs coming through cyber space from me to you.
Bar-bra you have my thoughts and prayers as you take this next step. I'm sure it's very difficult but you can do it and you will find strength you never knew you had. We are all here to support and love you.
My MIL went in to a NH from teh hospital, and that is by far the easier (if that can even be said) way. both of you are in my thoughts and prayers. We will all be there at some time, unless they pass before it happens. sometimes, that's what I pray for. what a difficult decision to make. My heart goes out to all who have had to make that decision.
As I read this thread my heart is aching for all who are having the pain of having to place a LO. It has to be the worst pain knowing you want your LO with you but also knowing the time has come for placement. As the time approaches for me to face that change I can hardly stand it. Just know that my thoughts and prayers are with each of you as you go through this ordeal. ((((((HUGS)))))
THANK YOU each and every one of you lovely people for your very kind words, thoughts and prayers ....... I know I've made the right decision and the decision which makes most sense, however, it a decision that I just have a hard time accepting but I know, in time, when my thoughts get all sorted out and I'm once again thinking straight with a clear head rather than a broken heart, I will accept this as another step along life's path. I've been told so many times that getting old isn't for sissies and I always laughed but now I truly know getting old really isn't for sissies ...... one has to be strong, strong, strong ......... I've been on this journey for almost 7 years now and been making all the day to day decisions, on my own, almost as long - my husband was only dx 7 years ago but the disease had taken hold many years before ..... I just didn't/wouldn't/couldn't acknowledge it.
It was funny last night when I got up to the hospital – there was my husband laying in his bed, no teeth and different glasses on. I asked him where he got the glasses from and he told me they were his. I said no, those aren’t your glasses and he was adamant that they were and told me he had two pair. I opened his bedside stand drawer and there were his teeth and his own glasses ...... guess he must have been up and taken them from the guy in the next bed ......... gawd – I’m glad it wasn’t the other guy’s teeth he took!! ......... anyway, I put his own glasses on him and his teeth in his mouth and took the glasses down to the Nursing Station ..........guess he still needs me in spite of having high priced help supposedly looking after him :).
Bar-bra - they always need us even when placed. We know them best and are often the ones to spot something that is wrong and ensure that it is corrected. We give them the love and attention that they need. The facility will do some, but there are just somethings only a spouse can do.
My husband no longer talks, can no longer walk or feed himself, but he lights up when I walk in to visit him. He wants his kisses and loves to hold my hand. His hugs are no longer what they were but he hums when I hug him. If he is in bed I can put his arms around me and he will still squeeze me (and hums to). When he first started humming during a hug all I could think of was the Campbell soup commercial 'mmm mmm good.....'.
You are his advocate. You can work with the facility to figure out things that he can still do and enjoy. You can make a difference on his being in the facility being a positive experience. Good luck to you ((hugs)).
Mine has passed through the stage where it was unh unh unh unh (rhythm of "mickey mouse club") and now is into WHOOOOOOOSH! when he walks. Somewhat more appealing.
I don't know if that's so strange......the other day I couldn't stop singing the old Mr. Ed song. A horse is a horse of course of course and no one can talk to a horse of course, unless of course the name of the horse is the famous Mr. Ed. People yakity yak and talk away the time of day, but Mr. Ed will never speak, unless he has something to say....................................................alrighty then............ ;o)
Susan L.....that's SO funny! And, as a matter of fact, I just came in from the barn about an hour ago....I was stressed and sometimes just like to go fetch something to groom. It soothes me....and I was singing "Somewhere Over The Rainbow" (the 'IZ' version) to my mare. Now, I can't get it out of my head!
I think we would all love to keep our LO's home until the end but if mine gets mean and meds don't work or if I'm not able to take care of him physically, there's really no choice. Like Therrja says, they will always need us.
I guess I am just not as loving as everybody else, but I do not plan to keep DH at home til the end if I can possibly avoid it. I know my body and I have about reached my limits on the stress I can tolerate. I'm going to say it right out loud, I am looking forward to the day he is ready to be placed.
Weejun you have to make the decision that is right for you. Nothing can stop the progression of the disease. There is no reason for it to claim you, too.
My own physician has made the suggestion that for my own health, I think about placing DH. He's no where near ready for that and it just shook me up to think about it. I can only imagine how you are feeling. My heart goes out to you. And you are in my prayers.
Weejun, so sorry, there is a very sad example of the toll AD can take. I'm with you about placement, I think. I'll be ready when the time comes, I think. But it's easy for me to talk, we're nowhere near that stage yet.
I had hoped that I wouldn't need to place him, even had visions of keeping him home until the end. It didn't work out that way. We can only do our best for them and sometimes our best means placement for both them and us. It turns out that it has worked out well for both of us. I got to enjoy him again and as he progressed to a wheelchair, he is in a place where there is lots of room for him to maneuver around. They also have activities that they include him in. I could not offer him all of those things at home. Placement does not have to be a bad thing.
((Bar-bra)) How is your husband doing? How are YOU doing? Any luck yet finding a nursing home? I don't know if it is easier taking them right from the hospital? As I too had to drive Lynn to the NH, it felt much like the ride with my beloved dog to the vets when I had to put him down. accccck. I am sure it is difficult either way!!
It is such a difficult thing to do, try to remember you are doing it out of love. Another thing that helped me a wee little bit was to remind myself daily, that IF it didn't work out, I COULD bring him back home. 6 months later and I still tell myself that every day. I can't think of this separation in terms of "forever", so I take it one day at a time. It is much easier for me to handle that way.
I wont lie, it was more horrible than even my worst of nightmares. But, I will promise you, it does get a little easier. I didn't think Lynn would ever adjust! But now he truly has. He is very comfortable, he is SAFE and the staff dotes on him :)
The most unexpected thing, and also the greatest blessing I could have ever asked for is that the separation though hard, HAS brought us much closer! His rage and anger towards me is completely gone. It is ALL love and kindness now. For us it IS about "quality" time. Every moment we have together is now gentle and sweet. We hold hands, we lay in the bed and watch TV together, he hugs me and every single day tells me how much he loves me, that I am his whole world....words I never thought I would hear again. * ok crying now.....
It IS hard, but no it doesn't have to be a bad thing... in fact, it can be gift beyond measure. Many thoughts and prayers for you and your husband ((Bar-bra)) Hugs of understanding, Nikki
Weejun, unlike a lot of us you have been here before. And you can see what keeping someone home too long can do. Caregivers DO die before their LOs if they keep them home too long under circumstances where they need help and are not getting it.
If you need to place him, you need to place him. Has nothing to do with emotions. Just with practical matters.
Boy, Nikki, you got me with that one..at this point I can't imagine G reverting to not thinking of me as the enemy and actually just liking me again. We have a long way to go.
Ohhhh, THANK YOU Nikki for such kind words and caring ……. they mean so much when it seems all around could really care less about our collective plights.
My husband is still in Hospital awaiting transfer to LTC – he could be there for some long time yet – it’s hard to read but he seems to have actually settled in to where he is – quite often when I go up to the hospital he is sitting in his wheelchair, at the Nurses Station, watching with wide eyes what is going on all around him and all the action. He is not able to express himself well so conversations are very limited. When he sees me he says “how did you find me”? so I smile, chuckle and whisper to him that I’m a very good detective ….. LoL !!!! – he always chuckles.
I find since he was moved from the Acute Care floor up to what appears to be the *holding area* for those awaiting transfer to LTC the nursing staff is totally different, they seem not so rushed, more interested in the patients, softer spoken etc ……. The area just has a whole different feeling about it.
Some times he asks really unnerving questions ……. One time it was “where are you going to sleep” – I just said “in my bed” – then I realized I should have just said “in bed”. Last night as I was wheeling him back inside after taking him for a walk for some fresh air (he in his wheel chair with me pushing ) he said “I don’t know where I’m going to sleep tonight” – I told him he was going to sleep in his nice warm, soft bed and have sweet dreams – that seem to make him happy.
I stay at the hospital each night and get him ready for bed myself - wash/shower, brush teeth, put dentures away for night, give him a drink before bed and then tuck him in myself, give him a kiss as I always have, stroke his head and tell him goodnight and sweet dreams - he always smiles ....... I then can leave knowing my day is complete.
He still does not seem to know me as his wife or by my name but calls me *the boss* …… LoL !!! Sadly, the other day when I said something to him about our Son he said to me “I don’t have a Son” …….. that about killed me but I didn’t correct him as I’m learning it is important for US to function in THEIR world and THEIR reality ….. correcting them only seems to cause more confusion and upset and, actually, to me it really doesn’t matter if he doesn’t remember me or my name or remember he has a Son …….. this really isn’t the man I married 48 years ago – this Alzheimer’s which bears my husband’s name – he’s not himself anymore but it doesn’t mean I love him any less.
This is all just so hard and like so many of you, I cry at the drop of a hat …… I seem to be able to go along for a while and even have some conversations with people and then someone will say a particular word and that just sets me off and I fall back into my ‘broken hearted mode’ …… I feel like such a fool when I do that plus I end up with mascara and eye shadow all *smooshed* all over my face – then I’m REALLY scary to look at – probably enough to make others cry ...... out of fear …… LoL !!!!!!
This damned disease causes so much hurtful, heart wrenching pain ……………
Bar-bra -the loving care you still take time to do for DH is wonderful. sending him off to bed at night with all those special touches is a true sign of the love you hold for him. they adjust much more quickly than we do thats for sure. hope he gets settled in his new home soon. in the meantime take care of bar-bra. divvi
Enjoyed your story, Bar-bra. He's so lucky to have you. Cry as much as you like. Yes, it's so important to accept their reality if you can. You're doing an amazing job.
John's doctor (neurologist) told me a couple of years ago to start looking for nursing homes for John....he told me that it was a good idea to place an AD patient before it really became a necessity. His thinking was that the staff would form a bond with him BEFORE he went through any horrific personality changes....and it would be more healthy for me as well as our relationship. I couldn't consider it. Never. Things haven't worked out as I imagined ...... that I'd be able to keep John here at home. Now that he's settled into the NH, I feel so "out of the loop" with him. I can't go there more than two or three times a week and the duration of our visits is getting shorter. I try to leave before things go awry...when he gets that look in his eyes, I know its time to say goodbye. He doesn't want me to touch him, hates pressure on him, so I can't lie in bed with him anymore. SOMEtimes he wants to hold hands, but not usually. He doesnt like noise, either, and will sometimes yell at whomever is making some. He's now soft-spoken and not abusive anymore. I'm noticing how childish he's becoming and he doesn't want to get up out of bed to let me wheel him around. Not interested in ANYthing. There seems to be nothing I can do for him. He DOES enjoy the milkshakes I bring him from the Hardees next door from the NH. I'm just lost about the relationship and am becoming very unattached, emotionally. I have my crying jags, too, still. I feel like I'm looking IN on the world, even though I AM trying to reattach to life. Trying VERY hard. Bless you for your love and care for your DH, bar-bra....and others that do their best, keeping your spouses at home. I just wasn't able to do it anymore. I miss having a partner.
I know what you mean about missing having a partner, stunt girl. I miss DH every day, cry most nights, even though he certainly wasn't much of a "partner" the last few months at home. I feel bad sometimes for placing him, but I know I had no choice, and I know I couldn't have provided the round the clock care that he needs, with working full time and trying to raise kids. Still, it's so hard. I miss talking to him, holding him, the way he made me laugh. Everything. I feel like I'm in a constant state of mourning, even though he's still here. I think this feeling of loss will never end. In a way, I don't want it to. When I cry at night, it feels like it's as close as I can get to being with him, if that makes any sense. Not much does these days.
Kelly.....I really do have a feeling at times that I'm betraying John, trying to get on with my life. Trying to socialize, get back to loving my sport, making new friends, restoring old ones....and actually going out to dinner or a movie with a male friend on rare occassion. I am fighting clinical depression, also, along with all the financial and other worries that go along with John's placement. I think I've simply found a new way to "medicate" my feelings of loss and mourning with all this new activity. But, it's healthier than being in a constant state of panic and crying, or staying huddled in the bed with the television on all day like I used to. I still have my crying spells. Lately, it hits me at night when I'm restless, or when a friend asks personal questions (which I don't mind at all) about "now, what?". I just swallow hard and switch it off, redirect my thinking, which I'm learning to do. Sounds cruel. But I have to learn to do whatever works....for my own sanity.