Hello, I’m new to the board, but have been lurking for about a year. My husband is, I believe, in Stage 7 somewhere. He’s in a wheelchair, age 87, has Alzheimer’s, peripheral neuropathy, and a few other things. He was diagnosed in late 2009.
He has difficulty expressing himself (can’t find the words), and has reverted back to his mother tongue. Most of the time he can’t process the information. For the most part, I understand him.
Problem – he has mobility problems, and just recently became incontinent, I’m having problems transferring him – he’s about 180, about 5’7”. I’m 4’10”, and am not about 123 (gained 25 lbs in the last while – stress weight) He should have been in LTC about a year and a half ago, (a nice place - but he refused the placement, as it was a bit far from home, and I would have to wait 6 months for a bedsitting room at the home.) We are now back on the LTC list. Doctor says he should be in LTC or respite NOW.
He’s now in respite for 5 days, but cannot understand why I can’t stay. He only feels safe when he sees me, and if I’m leaving in the evening he begins ‘why are you leaving’ ‘you should be with me’, ‘you’re not taking care of me’ etc.
The respite home is nice, but short-staffed, and the toileting is really bothering me. They require a lift and two people to move him. When he needs to toilet quickly, I ask them please to get him to the bathroom. They say ‘we are only 3 PSW’s on the floor, so we’ll be there when we can – I asked if they just let him soil himself and sit in it. They say, “we’ll it clean it up when we get there. Sometimes this takes – 25- 45 minutes. “I can’t let him sit like this, and have been moving him myself to the bathroom. I think they’re beginning to resent me.
Because of this and the separation anxiety (his mother died when he was 11, and he grew up in an orphanage (a good one, but still on his own and feeling abandoned), he has regressed back to that place, and I feel so guilty – I know I’m his safe place. He has never been aggressive, and now totally depends on me.
After the last few days of both of us being stressed, I found a place where we can stay together. It’s expensive, but we could stay together in the same room until end of life. The room is small, and I am considering moving us there together. At least then I can monitor what goes on with him, and he’ll feel safe. I do not think he has 2 years left in this journey.
SIL feels I should think this over very carefully, as I will be giving up my freedom totally, in a small space, and that I have to keep things in perspective. He said I should ask for the opinions of others in this situation.
I feel dreadful where we are now, and he has been a good, caring husband. My heart tells me to do this, and give him peace.
Any and all opinions and help would be appreciated.
I think it would be better for you not to move into the same small room as your husband. You say it is expensive. Might it be better if you used that money to leave your husband where he is and pay an aide to go in to help him to the toilet? It would take some planning. When is he most likely to want to go to the toilet? Is there an aide already in the respite home who could check on him? Does the respite home have their own aides for hire? Some do. I once had an aide, who had another patient under her care, spend 15 mins. every morning and afternoon checking dressings on my husband's arm (he would pull them off). I paid her for her time, and she did not neglect her primary patient. This aide was hired by an outside agency. According to the agency, this was not an uncommon request. You have to take care of your 4'10" frame. If you hurt yourself assisting your husband to the toilet, who is going to take care of you? And who will see to it that he is taken care of if you're laid up? I understand the guilt and his dependency issue. Many of us have had to learn to put that aside. It boils down to survival. Yours. You are the one who is going to have to see this through to the end. Even if that means leaving him for the staff to toilet. But try to get some help for this first.
Marg - I agree with what Mary said. If I could ask a personal question....if your hubby is 87 then how old are you? If you are around the same age then you really need to look after your health. This is just too much for you to lift a man that heavy by yourself.
As we all have said time and time again....Don't let this disease claim 2 victims.
Have you considered a skilled NH,they have more aides on staff. I am really happen with the one where my DH is.It has a 5star rating , is more expensive than ALF but will take Medicaid when our money dwindles down. Mt DH is only 77. I also think he gets more stimulation in the NH.
I also agree do not move in residence with him. you will be caring for him even though you are paying for the facility to do it. we know from input staff tends to let family do the nitty-gritty when they are with them instead of tending to them as they are usually short of staff. I know its difficult the toileting situation. but in a facility most I say 'most' are already incontinent and tend to wear depends. so getting them to a toilet every time they want to go is going to be an issue. it sounds horrible but they do tend to get comfortable using a depend at some point. we know its inevitable usually with this disease if they last long enough. the issue isn't going in the depend as much as having adequate help to change him regularly. with your tiny physique I would agree you cant do much on your own without risking physical ailments of your own. its all very hard but we must make adjustments when the time is right for placement. there are many many agonizing posts about so many here who have placed their spouses. most have adjusted well with time. take care of you. divvi
Marg, hoe can you possibly live lone with your DH in his shape? You cannot lift him. You will need to hire someone if you want him to have more care. You can't do this alone at this stage.
I totally agree with Mary. You need to not move in with him. If you were to move in with him, chances are you would continue to care for him even though you have help at the facility and that is not a good way to care for yourself. I have learned to not get caught up in the guilt although many times it still rears its ugly head. Guilt says that we have done something wrong or that we are hurting our loved ones. I placed my husband and gave up all my money so I could keep my health and sanity. It definitely does come down to survival. We cannot save them but we can save ourselves. I think the tragedy about caregiving is that if we are not careful we can lose outselves in the process and how sad is that? The unfortunate thing is that we do not realize what is happening to ourselves because we are so focused on caregiving. My husband when he was at home was very emotionally dependent on me to the point that I felt I was being suffrocated from his emotional neediness. I was up front with my husband in telling him that I was planning on placing him. Of course, he did not want to go but the final decision was mine and the final decision will be yours. He may never understand because they do not understand how this disease affects the caregiver. You can do this and you have lots of support here.
Marg, You are under extreme stress right now, and not in the right frame of mind to rush into making such a drastic decision. I totally agree with Mary and others here who have advised you to NOT move into a small room with your husband. You would be paying big bucks to live there, and probably not getting the assistance you need to care for him. You stated that your husband is in RESPITE for 5 days. Can he stay there longer, or do you have to move him somewhere right now? If he can stay, I think you should look into other options of care for him. It isn't easy for anyone here to make these type decisions. I know it hurts you to feel your loved ones pain and anxiety, but you have to decide what is ultimately best for you both.
I suggest you read Joan's blogs the last year before placing Sid. Her husband is tall and she is short. She about destroyed herself physically and emotionally trying to care for him.
He will adjust so I go with placing him as soon as you can find a bed for him in a nursing home.
SIL here. I am very glad for any and all feedback, it is very much appreciated.
I would like to add a few additional facts and perhaps ask a few questions as well.
The virtually sole benefit to the move would be that they would be together at night. Even now, whenever she is not there he becomes anxious and when she returns, keeps commenting on her not being there and wondering where she was. Imho this is the crux of the matter and while in some respects seems straightforward, it doesn't feel like it. What it boils down to is simply, is giving up the apt and moving into the shared room worth it. Otherwise, he would go to long-term care and she would keep her apt and life.
He was a very good man. I'm not sure if he is who he was anymore though, of course the exterior remains the same, he's still kind and has many of the same habits. This is the hard part. The fact is, I'm sure that even 5 years ago he would rather have died than put up with the indignities he has and would never wanted to cause her so much heartache. This gives me pause, I'm not really sure how much of the original 'him is left - this is the hard part and I really don't have enough experience with Alzheimers to know. The fact that he usually doesn't know me or her name is ... disconcerting. If he is still the same man underneath who we have loved, we would want to do everything we can for him. But with Alzheimer's ... I just don't know.
The room both would share is 16x16, it seems very small with very limited storage facilities. It seems like a very good place, privately run by folks who went thru similar things, so they are familiar with the issues. The staff seems compassionate and the staffing ration of 1:6 seems at least a bit higher than even the best government subsidized places. Being able to sleep together would be a benefit for him - tho for how long? And it would mean a complete surrender of private time and basically any sort of life. I should add that, who she may not like to hear it, the last year or so has taken it's toll health-wise and morale-wise, despite always being slender she has put on 25% more weight (sorry) and is extremely stressed. This is aside from any potential back issues related to moving him. One point I'm tried to make is that ultimately, the better/happier/healthier she is, the better it will be for him. Not only with regard to immediate care but the consequences of what happens is she injures herself (and perhaps him as well if he falls).
We appreciate all feedback, I don't want to comment on anything specifically yet. However, there was something I did talk about with her regarding staff care, incontinence, etc that divvi raised that would be helpful - the issue with toilets, depends, etc. What I did try to say was that this was not a sprint but an endurance race, it's not so much about the individual moments but the days. There are going to be times when he soils himself, at this beginning stage it is hard for both us and him to accept. It seems more callous by the respite staff (btw, a very good place) to say that they cannot come immediately when he needs to go, staffing levels, etc ... however they will be there to help clean up if necessary. From their perspective, this is simply routine and what they deal with all the time. Any feedback here would be helpful. Yesterday was hard, he needed to go and she helped him, risking her back in lifting, as well as him potentially falling. And the staff was a little snarky showing up 10 minutes later, saying she should have waited.
On the one hand, there is the feeling that if you love someone you would do anything for that person. What makes it complicated is determining the best 'anything' - in some respects, it seems to me that the better, happier, and healthier she is, ultimately the better it will be for him. And yet ... he does get so anxious and upset when she isn't there. The love and guilt are hard to deal with. It is very helpful to hear from folks who have also dealt with these issues.
kblues - I know when I first placed my hubby he was not happy and got very anxious.... pacing, yelling and swearing at me when ever I came to visit..... but slowly over time he adapted. It is just over 3 months and he has calmed down and settled in. I think now it is harder for me with the guilt and thinking could I have done more....the answer is NO!
Other members will tell about having the same kind of experience.....different behaviours and time frame but the end result is they all settle in, usually it takes about 6 months but sometimes sooner.
Marg needs to realize that you can't always do it all and do it till the end. She and you need to look to look after yourselves. This is a life sucking disease.
I may also add, that even if the wife decides to move in the facility with him, he may STILL ask for his wife and become anxious and a lot of ansiness--even if shes there!. just like he does now without her living with him. we know well the loss of recognition with spouses. so its a hit miss that she makes a lot of sacrifices to be with him and in the end it may not accomplish a lot. esp since hes already unable to recognize you and the wife at times now per your input above. I do understand the wanting to be with him and try to detract his apparent anxiousness but in the end they do usually adjust at a point. its a very difficult decision. I hope yall work it out.
Thank all of you for taking the time to give your advice. It is very much appreciated.
Firstly, I was at his respite home today. He was very happy to see me, and over the course of the day really began to relax. I reassured him (as we all do with our spouses) that we’ll always be together – because I can’t stay at night, I will be there tomorrow to spend the day. We talked (?) about the home, the staff, and the fact that the doctor said he has to be in care for his own sake. I said that when this happens, I will always be there every day, and we can spend time and eat dinner together.
One of the nurses came to speak with me – she firmly but nicely explained that they are trying to get him into a routine, so he can be toileted regularly during the day and avoid accidents, but this takes time. She understood my concern, and assured me that they really care about their patients. During the toileting they treated him with respect, in spite of the fact that he was so nervous and fearful of falling while being lifted. At the end of the day he began to trust them.
One lady sitting at the breakfast and lunch table with him was friendly (she doesn’t have AD), and I thanked her. She loves the place, and has been there for 4 years.
Because of weather conditions I didn’t drive, but took the bus. At 8 p.m. he began to worry about me getting home safely, and wanted me to leave. I know it was out of concern for me, and I haven’t seen too much of this side lately, so it felt really good.
So, I am breathing a bit easier.
I am 78 years of age – we have been married 43 years, but dated about 7 years before that. He knows he can trust me, but he’s still scared and feels vulnerable.
I am now seriously considering this LTC home for him, even though it was not on our list of favourites. The meals are excellent, and the patients seem to be happy and treated kindly and respectfully (have been observing today, and talking with a few).
Mary 75, the home I was considering yesterday was private, and the fees were about 3 times the amount regularly charged. I felt so desperate yesterday, but after all of the advice from the board, and the events of today, there is such relief. I will keep in mind your suggestion of having an aide help if things don’t go right. Hadn’t thought of that.
Jhourney, there are two other LTCs that we are on the wait list for – one has a really excellent rating, but the wait lists for these are about 6 months.
Kycaregiver, we have been having PSWs come in for a few months, at first for 2 hours 4 days a week, and evenings for 45 minutes, but there were always so many different people, and it is disruptive trying to work about mealtimes, etc. They were just for respite to get him used to new people, and I was having to spend the time with them in order to make him comfortable – his language skills have taken a real bad hit. About 2 weeks ago we changed the routine to have a PSW come in the mornings to help with bathing and dressing. It also was difficult to work around.
Another reason for his anxiety probably is that his doctor and gerontologist have told him he has to go into care, and he doesn’t know what to expect, plus all the different PSWs (while very helpful) have confused him. Sometimes he would say ‘can’t we just stay alone’. He’s always been very quiet and private.
CO2, I hear you – you can lose yourself in this battle. He has been sick with different things for 7 years – before that we were healthy and health conscious. If he gets into care, and begins to settle in (hopefully he will), I can begin to take better care of myself.
Charlotte, I have been following Joan’s journey very closely, and being in similar circumstances (but not have all of her illnesses) have really felt her emotional and physical pain.
Divvi, even though he doesn’t know my name, he knows who I am … if I ask my name, he will smile and say I can’t remember, but you’re my Liebling, or my Sweetie. I know he’s never been closer to anyone else. I have been following your messages very closely, and will continue to check, as you have very helpful information, particularly now!
Thank you, everyone, for sharing and advising. Margaret
Carlotte and Moon, it will be nice to be his wife and voice, and spend quality time with him. These last 7 years at home have been hard, and so much time taken up with caregiving. Although he has changed dramatically, he looks older, frail and you can see the AD, I still see him with my heart. I've been fortunate that he never became aggressive or delusional, and I really feel for couples where this has happened. Things to be thankful for! Thank you for your comments and advice. Let's hope today is even better.
marg, glad you're in a better frame of mind. It is very hard on both of you when a spouse is placed and as others have wisely counseled it takes time for everyone to adjust. Getting him into a routine at the respite home is very important-it helps them adjust better and more quickly, but it does take time.
I will be blunt...you accomplish nothing if your caregiving disables you or worse kills you. Then he will be in a nursing home and not have you to be advocate and wife. He will be alone. And clearly that is not what you want and not what he needs. And living together in a 16 x 16 room is not the answer either as others have stated above.
This is a difficult journey for everyone and the emotional havoc we all go through as caregivers (and yes our spouses too) can be devastating. But we all must remember we as caregivers have to take care of ourselves because without our love, caring and companionship they will have no one.
Here's hoping today is as good as yesterday. (((HUGS)))
Marg, you are very articulate and thoughtful, and I wanted to comment on that.
Food for thought: the room that you are/were considering, from the little we know, was a bit worrisome in that it cost 3x as much, yet was privately owned. That means that the owner could close up shop at anytime, or it could be shut down, and your money would be gone or tied up and you would be responsible for finding other accommodations for you and your husband. I like that the nurse at respire recognized and addressed your anxieties and gave you a plan of action as well as reassurance that given time, it will work.
The responses to your inquiry were filled with experience, thoughtfulness, and care. This place is an amazing resource.
Food for thought on the room: I live in a motorhome which is 9 x 34 plus a slide. We have lived in it for 10 years but now that I am stuck with him most of the time, it is getting smaller. I still can go back to the bedroom to be 'alone'. If you take that room there will be no place to go for 'alone' time. Especially if you are use to a large house, they can close in.
MARG,Over the past 12 yrs,I volunteered at the NH my DH is now at.I've seen several couples enter the NH at the same time. The children think ,Oh, this is great, Mom ans Dad can bein the same room together. Well, not one time has it worked out. Either Dad gets verbally abusive to Mom, or Mom starts nagging Dad to death, and they have to separate them. Presently, there is a couple,he has mild AZ,she has MS. They had to separate them to opposite ends of the building.They have also had to have them not eat at the same time in the dining room at the main meal. Poor man is hen pecked so badly he stops eating. I keep him engaged in conversation uyntil she is almost done and then take him to dining room. I seat him and give him a hug and ask if his wife will get mad.He says it's" OK it feels so good".Please think it over very completely before you share a room.Y our DH will adjust in a short while.And so will you.
Hello again, Today was not so good. When I arrived about noon, his wheelchair was lined up in the hall with others, waiting for lunch. As soon as he saw me, he said “I have to go, I have to go”. I thought it was toileting, but now I’m thinking that he just wants us to get away for a while. Then he starts saying that he misses me so much, etc. etc. He gets a bit carried away, and I keep reassuring him that we’ll always be together, even though he may have to stay in a LTC. I have to begin to change the subject to something else.
I helped him with lunch, and then back to his room. He begins acting up again, saying that I can’t leave him, etc. It’s so raw, and he called me his mother today, then reverted back. As mentioned, his Mom died when he was young, and after she died he ended up in an orphanage. Even though the Home was good, he never had visitors, while others did, and the staff gave him jobs to do during family visiting hours, probably to spare him from seeing other getting gifts, treats, etc. Later on, he went into apprenticeship ($5.00 a week to start, later $17.00), but received not a penny of that money – it either went to the Home or the City for his maintenance. He would run home at noon for lunch, to save carfare, in order to buy a chocolate, or something. I am wondering if he’s now back in that place – when his Mom was alive he was safe – when she left, his world fell apart, and this is what he now fears. Probably too much information, but I know him, and in spite of the disease, my instinct is to protect.
However, knowing that he has to be in care, I have to toughen up for his sake and mine. The thought of putting him in an LTC and not visiting until he adjusts is heart-wrenching. Will have to think about this, and consider all the advice you’ve all given, through your experiences.
Have decided NOT to take the home where we would be living in one room. That’s definite.
I pray that I have the strength to do the right thing, however that plays out. But I have to listen to people with experience, who have gone through this. As you have said, it is not a sprint!
Marg, have you considered just telling your husband that you both have moved to whatever LTC facility you move him to, instead of telling him that he has to move to a facility? I told my husband (as we entered his room for the first time) that we'd both moved and he accepted the move better knowing that "this is where we now live; your room is here and mine's down there". Of course, "down there" was never clarified and I never offered to take him to my room. If he had asked to see it, I'd tell him some fiblet like "they are painting the room now" or "they are cleaning the carpet today" and distract him with a snack or something. When I left him, I always told him "well, I have to go to work for a while" and NEVER said the word "home" again. I never tried to reason with my DH at this stage, I just said whatever would help to calm him down. His sense of contentment and safety is my entire focus.
I didn't stay away from him until he adjusted; because his adjustment took a few months. I visited almost every day, but I'd just walk into the room (no purse or coat) so that it seemed I'd just been out of the room for a while. I'd join him in the afternoon's activities and then stay with him until they sat down to dinner. Then I'd say "I have to go to work" (I worked at that time but "I have to run a few errands" also works).
I hope these ideas help you. This is a terribly painful time and I wish you the best of luck.
Marg I do have one question - you say he is in respite: how much rest have you gotten? Seems you are there every day all day doing much of the same thing you did when he was at home.
As for LTC you answered your own question in your first post: He should have been in LTC about a year and a half ago
Fiona 68 - You deserve the award for 'Getting It.' You don't use logic, you don't explain, you don't let them make decisions, you are in charge. It's all about keeping life as calm as possible and understanding their reality--which is no longer the same as yours. Good for you!
Bettyhere - thank you, thank you - what you have said will be my mantra going forward. Am just a few weeks from placing my EOAD husband and am dreading it as he will not go willingly, even though it is probably past time. Fortunately, I have the support of my children but am still fearing the emotional upheaval for both of us that lies ahead. However, as so many on here have said in the past, as caregivers we have to look out for ourselves and for my sanity I need this placement and just have to hope the adjustment doesn't take too long.
Charlotte, you are right – it is supposed to be respite for me, but just having him in a LTC is a huge step for us. It seems that a bed will become available here within a few months. If I can keep him calm until he settles in and feels safe, then I can back off a bit, and start taking time for me. At least now I don’t lift him or toilet him or cook – my time is spent keeping him calm, taking him for walks in the wheelchair and making him feel cared for. It makes him contented.
Fiona68, I love your suggestions - because of my age he knows I don’t work, but I can tell him (and have done so often) that I have a ton of work to do (housework, paperwork, etc.) Now I will just pick one of those jobs, and tell him I have to go and get it done before things get out of hand. He IS trying to help me – the other day he said I should leave early to get the bus and get home safely – today when we ate, I fed him first, and he kept saying that I should eat my dinner before it got cold … he told me that without me he would be finished - little things, but they mean he thinks of me and cares.
Bettyhere*, I agree with nbgirl – simple, and something I will paste on our bathroom mirror. Every day it will be a reminder. I am a slow learner!
He was to be in respite until Feb. 10th, so I told him tonight that we would be coming home tomorrow morning. Got home and received a message that his stay can be extended for another week. Because I promised, and he has to trust me (he doesn’t forget my promises, which I have to stop making!), I decided to have him home for 2 days, then tell him that the doctor says he needs to go back. I’ve kept my promise, (I already told him repeatedly that the doctor said he has to be in a LTC for his safety) and I know he will remember that. Somehow I think it will work. Please, God!
Today was a better day, and he is getting used to the staff. This is going to work out, just slowly.
Thank you all for your input and advice. The support is so much appreciated …
This is a long hard journey and there are no absolutes in caretaking because each and every Alzheimer's patient is so variable. The common bonds as caretakers/spouses is that we want the very best for our spouses and many times in the process of caretaking we forsake and overlook our welfare and health. We need to place ourselves first, as selfish as this sounds, because without our health and physical well-being we can not care for our spouses properly.
Alzheimer's is an horrific disease and placement is not easy, but give it time. Slowly you and yours will adjust and it will work out. I know it's difficult, as I am in the process of struggling with a placement as well. It's tough so go easy on yourself.
Bettyhere, Thanks so much for the kudos. That is high praise coming from you and has really lifted my spirits tonight. Although I am typically comfortable that I'm doing what is right for my DH, it certainly helps to hear praise from one who has survived this disease. :)
Hello again, My husband is back in respite for another week. It wasn’t such a good idea to bring him home, because he had to readjust to the LTC; first day back was hard.
I have taken to heart the advice given – making no promises when he asks how long he will be staying, etc. …just say that I’m not sure, and gently change the subject. He’s trying SO hard to accept his stay, but feels vulnerable to everyone – this hurts the most –his feeling of powerlessness. Spent all yesterday with him (first day back), and 7 hours today – took him to try an activity (curling), and intend to get him involved in other activities that are going on every day. Try to make it fun, and let him know he’s loved and safe.
Had dinner, and then his table mate, a lady as sharp as a tack, invited us to see her room, so my husband could see how comfortable it can be; she is very kind and always talks to him, even though he doesn’t always know what she’s saying.
One upset - after lunch there were two PSWs changing him – he was in a lift over the toilet when I arrived and they hadn’t seen me come in. One of them ordered me to stay out of the room in a rude manner; the look of confusion and upset on my husband’s face and her abrupt attitude made me see red. Having learned from THIS website, I stood my ground, told her firmly that I was NOT in their way, that they had plenty of space to work, that it was my husband, and I had a right to see what was going on. I also told her that I did NOT appreciate her attitude. She then apologized a few times. I was considering reporting it, and may still bring it up, but she got the message.
All of the other staff are pleasant, and there are, as yet, no problems. From the time I come, I spend my time with him, and they have thanked me for giving his pills, feeding, etc. I know you will be thinking I am doing their job, but until he settles in a bit, my feeling is that this is the right thing for HIM.
Fiona68, I keep a light and positive attitude with him, telling him that I have to catch up on my work, don’t mention ‘home’, and Bettyhere* I am trying to get into his world right now, and trying to ‘get it’ for both our sakes.
Lulliebird, thank you for your advice. You’ve had a very tough time of it, and wishing you the best in your placement.
Charlotte, we visited his doctor during our break from respite; his doctor is so supportive, and explained to my DH why he should be in LTC, that they were both ‘big guys’ and hard to move around, that he needs more assistance, etc. He always makes my DH feel good, which hopefully makes DH try to understand why he needs LTC.
Thank you ALL for your advice and support. We don’t have half the problems of some of you, and wish all well.
Hello again, Still having problems with my husband’s adjusting to respite. His stay was extended to Feb. 25th, and then to another facility until March 4th. while we wait for a bed.
He is slow at following instructions (hold on while getting on the lift for toileting), when being washed in the morning, etc.; the speed with which they have to do things, have him confused. Everything is rush, rush, rush, and they’re gone. (I understand they have a lot of people to deal with.) He is then left in his wheelchair with the TV on for most of the morning, and to him it’s just noise. He just waits for me to come (just after lunch), and the tears start, and he keeps saying in his broken language – ‘you let me down’, ‘where were you’, ‘what were you doing’. I shave him, taking time to be gentle, while talking to him. Then take him, most of the afternoon for a walk or to any entertainment. They’ve had some nice entertainment, and he smiles and seems to enjoy. But then the sadness ‘we belong together, and should be always together’, ‘I cannot understand why you aren’t here with me – I need you – it is so hard for me to say something, and I get all mixed up – when you are here you can help me.’ He’s in such distress, and it is breaking my heart.
I’ve tried to put the guilt aside. Two days ago I asked at the nurse’s station to speak with the nurse – (I wanted to ask her if she could speak with the doctor, and see if there was some medication to ease him through this time). There were PSW’s at the station, doing their reports. One PSW (young) asked me what it was about. I told her it was private, and asked if she was the nurse. She said no, but then got really pushy, and kept insisting on knowing what it was about – was it about a staff complaint – I said no, just private. She was insistent and rude, and I got very upset.
I found out WHO the nurse was, and asked to speak with her, but the nurse kept ignoring me. I then turned to the nurse who admitted DH and had just come to the desk, and asked if I could speak in private. No privacy – she asked what it was about, (all the desk staff listening) and I said again, its private - the rude PSW then began snickering about me, and I lost it – told her she was rude, and I was reporting her, and I wanted to speak with the person in charge. (This is NOT the way I usually operate, but my nerves were shot). The admitting nurse then invited me into the conference room because people were listening to the exchange between me at the PSW, and the head nurse in charge of staff came from another floor. The admitting nurse told her I was upset, that the nurse on the floor had pushed me off and ignored me.
I told her I wanted to speak in private, because I felt my DH was back in his mind to very sad days when he was alone after his Mom’s passing, and could she ask the doctor to reconsider giving him something to help ease the transition. I told her that I was taking care of my DH from 1pm to 8pm, and other than toileting, they were not burdened with a lot of work for him. He was not a lot of trouble to them - I only wanted to know if the doctor would reconsider a medication.
I put this in writing, about the issue at the desk, the rudeness of the PSW, my reason for wanting to speak with the nurse, etc. and sent a copy of DH’s family doctor who said he would be his doctor on record, his gerontologist, the doctor who is at the NH, and CCAC.
Thinking that DH might pay for all of this, I mentioned it, and she said the PSW would not looking after DH.
With the exceptions mentioned, the staff have been good – at the beginning they said he was resistant (when changing him at night), but I said it’s because his body is stiff, not resistant, and his mind is slow. He just doesn't always understand.
What would your suggestions be re: a medication to help him, or anything. Seroquil was mentioned by his family doctor, but the hospital doctor refused – they say it is too powerful, and he might try to get out of his wheelchair and fall. (When having previous surgery he was given strong narcotics for pain and he ended up in hospital with a bowel impaction.)
Any suggestions? I’m trying so hard to be calm, and handle this, but how?
Margaret, I wonder if a small dose of anti depressant might work, my guy is on 10 mg. of celexa. It also tends to make one more relaxed and a bit sleepy. They have been slowly weaning him off Seroquel, down 100mg. to 25mg now. I am hoping the Celexa will be enough. The seroquel was for him in the earlier stages when he was still walking , and falling...
You poor dear I feel so for you. What a great wife you are, and my heart goes out to your husband. I will be hoping and praying for a good outcome for the both of you. Please know you are doing all the right things, and in my way of seeing things....the angels in heaven weep with joy when they see such love.
Margaret, sorry to hear that your poor husband is being treated so badly.You are doing the very best thing possible in speaking out and expecting more from the staff, keep it up! And if his Dr is able to visit him at the NH, that would be even better. Coco is very wise and her suggestion of an anti depressant is a good one. Lexapro is also one of some excellent medications for depresssion in dementia, it was one that worked very well for my DH for a long period. And it really sounds as if your dh is depressed. Keep demanding better treatment from the NH, it is very difficult I know but it must be you who speaks for your DH whilst he is there. You have been very impressive to date! And I send you good wishes for even more strength and courage. All the very best.
Thank you, Coco, for your kind wishes. He does take 20 mg. of Celexa per day, and I am hoping his doctor will see my letter and think also the lines of just giving him even an increase in that or something like it to relax him through this period. I wish your Dado the best, and know that you are in his corner when it is needed. Cassie, I had not heard of Lexapro, but will keep this in mind. Thank you also for your support. It is what keeps us all sane.
I am hoping my letter will allow the staff to see him as a person, not a number. Since speaking up it seems they have been on a personal level more considerate and kind to him, and he was feeling much better today. Other than toileting, they do not have too much work with him. It is a good NH, other than a few people. We are going to get through this (fingers crossed).
Dear Marg75 -- I am so sorry to hear about this because I know how hard you are trying and how difficult it is to see your DH in such a state. I really don't keep up that much on meds, but it sounds like others have good advice. Please know that we understand and are thinking of you. I send you strength.
Dear Bettyhere* There is wonderful advice here from others in similar situations, and the support gives us strength of see it through. Maybe I will hear something today that is helpful (although it’s a holiday here). Thank you. I am optimistic that this will work. Margaret