sept 21

[PalSal]

Real medication problems. The home had been telling my daughter things were going well but the nursing notes express a different view point. I am amazed at how the staff do not seem to be coping with what I believe must be pretty standard Alzheimer's behavior. They are saying he disturbs the other patients, he tore down a shower curtain in some incident, and he threw a lamp. Also, that his sun-downing is really severe, and That he does not sit alone and must be with someone all the time....that he is not sleeping thru the night which makes it difficult for the night nurse.
He has the added issue of language as they all seem to be speaking German there are at least two on the staff on the 4th floor who speak English but of course they are not there 100% of the time.
I went over for three hours just laid with him in his bed while he slept. He would startle awake about every 30 minutes, I would just get him to stay in bed. Hopefully, he will adjust and they will work out the medication issues. Another problem is he is so much younger and not used to going to bed early....like the 90 year olds on his floor. But really I was there at 7 pm and only 3 our of the patients where still up on their feet....all put to bed.

 

[jennifer1967]

thats a long night. even for 90 yr olds what time do they get up? what happens about their night time medication? even if it was only paracetamol thats a long time to go and how do they admin the dose of 2 four times a day. theres not enough hours. one size doesnt fit all so why has your husband have to go to bed the same time as the rest and can he be left up until the other 3 goes to bed?it just feels weird that the majority are put to bed en masse so early

 

[PalSal]

This morning is a meeting with the administrative staff....management of Nick's home. My expectations of what his adjustment time and exactly how care in the home would be provided, proved to be optimistic. Not surprisingly because I have a tendency to try to look at the bright side of things. Once again I must look at the bright side and be positive as I suggest changes to their operations. I do not really expect they will change....but I am making them aware that I , (and the professionals I have spoken to from Nick's Dr., Dr. from the memory clinic, the Director of Aging for the Canton, and the local aging advisor of the village) find their policy of 3 staff from 9pm to 5 am and no one placed on the "protected floor" which has 14 patients, unacceptable. The night staff only answer to alarms which is just incredible. But it is a financial issue and I have found out that there are no regulations or recommendation which would force them to change their policies. (there are regulations regarding children and ratios of staff to child, but nothing similar for the elderly, which is unbelievable) The nursing staff, with whom I am working well and have great respect for, are behind me and they themselves feel the night shifts are understaffed and more staff should be hired.
My part in all this, I never checked what the conditions were at the home at night time. I went at different hours in the daytime but I had no access to the home after 6 pm. So, I made incorrect assumptions. That is my responsibility in the situation. I should have been more questioning.
Nick has had so many problems; adverse reaction to 3 new medications they tried, then going without any meds from Oct 21....his Alz behaviors increased but he is physically improving a little, and insomnia, which brings on behaviors and more confusion. My gentleman who never was violent has become so, (he was a tall, strong man who never needed to prove himself but at public school as a boy and teen, he boxed....I never ever saw he resort to fisticuffs but now he is in the home) and he stands and just shouts and shouts . When I arrive, I am quite strong with him and tell him to "shut the "expletive" up" that he cannot shout like that, and he stops. But I guess the staff is not allowed to be that direct and strong with him as I am. I now go over and sleep a few nights each week, they have a folding cot for me to sleep on.
Nick always seems glad to see me for moments when I arrive but then he returns to his confused and agitated state. I do not feel like he really knows me, although the staff say he asks about me all the time .....where I am etc.
I just would say that, as carers cannot underestimate what happens when we place our loved ones in care homes.....the adjustment can be so difficult for all.. I read similar experiences here on TP but did not truly understand the meaning until this experience happened for us. Seeing him so frightened anxious and unhappy day after day is tragic and wearing- I cannot help but question the purpose of his life as it it.

 

[canary]

((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))) @PalSal
It does not sound like either of you are in a good place at the moment.

It can take a long time for someone with dementia to settle - it took mum a couple of months and she settled in very easily, even though we had a few weeks of her packing to "go home". Im sure the constant changes of drugs arnt helping him to settle either. Nevertheless, I am wondering whether his needs are actually too great for this home. Is it a dementia home, or is it mostly for the frail elderly? I get the feeling that they do not have much experience in dementia. Not having anyone checking on them at night is awful - many, many people with dementia are up and wandering during the night. You should not have to go in and continue his care.

Re the constant asking for you: my mum recognised me till the end, but I have read so many posts saying that the person with dementia can be distressed and crying because they dont know where their wife is, all the while their wife is standing in front of them. It may be that Nick is wanting the you that he remembers from when you first met. Care homes with experience with dementia should recognise this.

I know it is very early days, but I am wondering whether this is the right placement for him. I know finances are a burden and it may be that more suitable homes may be more expensive, but do keep an open mind about finding somewhere else if he doesnt settle.

 

[jennifer1967]

where i worked we used to check on them at least every hour. how would they know if he fell out of bed, needed a pad changed, a drink, etc. i thought that was what you were paying for 24/7. what do the night staff do all night? need to ask if they have had any training. some training is mandatory.

 

[Weasell]

I am so very sorry to hear what you are going through.
What is the total number of residents the three night staff look after?
I ask because if someone presents challenging behaviour through the night then at the time it takes place they need two staff, not one. This is not only to protect the staff but to ensure the patients are well treated.
Other enquires you may wish to discretely make are ,what tasks do the night staff do through the night ? because if the answer is laundry and cleaning then you ‘dilute‘ the staffing potential even further.
Hopefully they will solve the medication problems and he will then settle in well, but I think I might be investigating other care options. I might think of it as a little project to keep me from worrying so much.
Also If , despite what you have communicated, they have underestimated his level of need, then is a higher contribution of money available from the state ?
But hopefully you are just having a settling in blip, and things will quickly sort themselves out.

 

[None the Wiser]

Oh @PalSal! This is no rest for you at all. It reminds me of a few weeks ago with my husband in respite. My husband became aggressive, didn’t sleep at all, and wasn’t eating. It has taken a month back at home with careful management to get him back to something close to where he was before he went into care. It made me completely rethink what is best for him.
I do so agree with @canary I wonder if this is the right place for your partner. It really isn’t right, and downright dangerous, that they are being left all night with no one around. It worries me that a home should expect dementia clients to use a call system!
I wish you well with finding a way forward. There don’t seem to be any ‘ideal’ solutions for any of us. Take care.

 

[Lone Wolf]

This morning is a meeting with the administrative staff....management of Nick's home. My expectations of what his adjustment time and exactly how care in the home would be provided, proved to be optimistic. Not surprisingly because I have a tendency to try to look at the bright side of things. Once again I must look at the bright side and be positive as I suggest changes to their operations. I do not really expect they will change....but I am making them aware that I , (and the professionals I have spoken to from Nick's Dr., Dr. from the memory clinic, the Director of Aging for the Canton, and the local aging advisor of the village) find their policy of 3 staff from 9pm to 5 am and no one placed on the "protected floor" which has 14 patients, unacceptable. The night staff only answer to alarms which is just incredible. But it is a financial issue and I have found out that there are no regulations or recommendation which would force them to change their policies. (there are regulations regarding children and ratios of staff to child, but nothing similar for the elderly, which is unbelievable) The nursing staff, with whom I am working well and have great respect for, are behind me and they themselves feel the night shifts are understaffed and more staff should be hired.
My part in all this, I never checked what the conditions were at the home at night time. I went at different hours in the daytime but I had no access to the home after 6 pm. So, I made incorrect assumptions. That is my responsibility in the situation. I should have been more questioning.
Nick has had so many problems; adverse reaction to 3 new medications they tried, then going without any meds from Oct 21....his Alz behaviors increased but he is physically improving a little, and insomnia, which brings on behaviors and more confusion. My gentleman who never was violent has become so, (he was a tall, strong man who never needed to prove himself but at public school as a boy and teen, he boxed....I never ever saw he resort to fisticuffs but now he is in the home) and he stands and just shouts and shouts . When I arrive, I am quite strong with him and tell him to "shut the "expletive" up" that he cannot shout like that, and he stops. But I guess the staff is not allowed to be that direct and strong with him as I am. I now go over and sleep a few nights each week, they have a folding cot for me to sleep on.
Nick always seems glad to see me for moments when I arrive but then he returns to his confused and agitated state. I do not feel like he really knows me, although the staff say he asks about me all the time .....where I am etc.
I just would say that, as carers cannot underestimate what happens when we place our loved ones in care homes.....the adjustment can be so difficult for all.. I read similar experiences here on TP but did not truly understand the meaning until this experience happened for us. Seeing him so frightened anxious and unhappy day after day is tragic and wearing- I cannot help but question the purpose of his life as it it.

Do not blame yourself. From your previous posts, you clearly have done everything you possibly could. There are many aspects to weigh up when considering a care home, and proximity is a very important one. You never really discover what a care home is like until your loved one is living there. Is there a cantonal or national body which regulates the care home system? Inadequate overnight staff levels are a safety issue, particularly when there are residents with no capacity to use the call alarm.

 

[margherita]

I do hope today's meeting goes well
One day at a time things will improve.
Thinking of you, @PalSal

 

[Grahamstown]

but did not truly understand the meaning until this experience happened for us

How true this is! Admission to a care home is just another way of caring for a person and it’s not always a satisfactory experience. I always feel that the carer is between a rock and a hard place, getting some relief from the relentless work of caring and seeing that it has its limitations. Perhaps the trick is to weigh up which is worse and settle for the least worse option.

 

[PalSal]

Thanks for all your responses. As I said there are a total of 112 patients ( residents) over 4 floors. 14 in the protected Dementia 4th floor.
Changes have been made and the 3 staff on duty from 9pm to 5 am are now called out from the 4th floor . There is an alarm floor pad if he gets up in the night. That has been in place from the beginning. But we feel that there should be more staff. But as I said in my earlier post.... there are no regulations or recommendation which would force the home to change their policies. (there are regulations regarding children and ratios of staff to child, but nothing similar for the elderly, which is unbelievable, in this Kanton)
So anyway, a little progress has been made with that change. But more staff is really required and I do not think that suggestion has been taken on. The chief of nursing was defensive and my daughter and I did not feel she was at all supportive of her staff.
He continues to have terrible insomnia . I can only hope that this will change.

 

[canary]

He continues to have terrible insomnia . I can only hope that this will change.

The problem is, that it may not be insomnia - it may be that his internal clock and his daily biorhythms are broken. Im afraid my mum was one of these people with dementia who was up wandering around every night. The staff were completely unfazed by this behaviour, chattered to her and made her tea and toast. She would often go to the lounge and join the others who were also awake.

 

[Grannie G]

But we feel that there should be more staff.

I think most of us with experience of care homes feel the same @PalSal, especially at night and during the weekends.

These care homes are businesses and even though carers are on very low pay, the rumming costs of the homes must be astronomical.

I don`t know the answer other than government provision ensuring care homes are a service rather than a business but we will always remain at the bottom of the barrel.

14 in a dementia unit is good in comparison to some. There were 17 in my husband`s care home and only two staff on duty at night time, with one on call. A few were active during the night time and it was accepted their body clocks were out of sync and many napped during the day.

 

[PalSal]

Really tired. Kind of in a state of limbo. Not sure what I will get up to today. I have things to do in the house. It is beautiful here, I should take a walk. Not sure if I should visit Nick or not.

So, Nick has had really bad time again this entire week, lack of sleep being the biggest issue. On Thursday night we heard from the nurses he was crawling on his hands and feet and striking out at them if they tired to help him to his feet. When I saw him on Friday he could not hold his head up and did not want to get out of his chair.

Things have been going from bad to worse here. But thanks to our daughter's calm and considered approach to medicine and her ability to compartmentalize, we avoided a Friday night emergency hospital entry. I have really been in bits. (She is a pediatrician --but did have some training in gereatrics in med school ) But thankfully, Nick got some sleep at last late Friday night and he slept much of Saturday.

He will have a visit from his GP for some blood tests on Monday. But sadly, I fear this change of routine and environment (living in a nursing home) kicked him into a endgame scenario. I really do not know. But his condition has been very bad the last week. He is barely reachable, so confused and anxious, we are unable to give him walks or exercise which adds to his physical deterioration. I thought the swelling in his hands and feet and calves was from the meds, but our daughter feels it is most probably from lack of exercise.

But the doctor has asked the questions of food tubes etc, to which we have said NO!. Luckily, Nick made these medicals decisions some years ago and we have his written/signed wishes for the doctors and the team (Actually they all have copies of his wishes).

This is not how I envisioned Nick's time would be in the nursing home. My expectation was that he would be cared for (all the hard stuff) and I would go in everyday, take him for our lovely walks, go out on our normal village errands and have a coffee, be loving and kind to each other. I expected this to be an opportunity to love him. again and not be so wrapped in his physical care. This rapid deterioration was not part of my plan (my ego tells me I have power and I think I can control life. Ha!) and I am really having a hard time seeing him suffer so. Our daughter, was very sad and emotional last night after she went over to meet with the nursing team and together the nursing team and she had a telephone conference with his neuro psychiatrist. I watched the children so she could be with the team participate on the phone call.

I must pray for God's will, and that Nicky does not keep suffering-whatever that means-recovery at some level from current crisis or final release. I am not sure his body will give up....but the last parts of his mind and brain are going fast

I am not sure if I am over dramatizing what is happening……I am not sure what I can do to help.There is of course a I little guilty voice that says, that I caused all of this by my inability to go on with him at home. I know I did not cause this it is the disease….but by my decisions I speed it up. But the truth is I could not go on any longer at home.

 

[Grannie G]

It`s terrible for you @PalSal.

My husband also seemed to go downhill following his admission to a care home. Someone on the forum asked me to consider if his deterioration was caused by his transfer to residential care or if I had decided on residential care because of his deterioration.

Fortunately for me he rallied and I did have good visits, although was unable to take him for hoped for outings. He was admitted in February and by the time the weather became warmer he had become agoraphobic

This disease moves in different ways and none of them are good.

.

 

[Grahamstown]

My heartfelt fellow feelings are with you as you endure the worst of times, which you had not anticipated. I remember those dayes and the conflicting feelings, wanting the suffering to end but the price being too high. Your suffering seems to go on and on, and I think and hope that pouring it out on TP that gives you some relief.

 

[PalSal]

Thanks Granny G and Grahamstown. It is interesting to me that I have come and read and been active on this support site for so many years.....but until one experiences the next thing, it is really hard to understand what happens with the progression of the disease.
I am grateful for all those years when I was able to provide for his needs at home. We did have some good times in spite of the disease. I need to hold on to that. And call up what I did do for him for a long time, not what I did not do or what I did wrong. I did the best I could.

 

[Grahamstown]

And call up what I did do for him for a long time, not what I did not do or what I did wrong. I did the best I could.

I still have those feelings and think that it’s one of the unintended consequences of looking after a person with dementia or indeed any chronic illness. I worked in nursing and midwifery for many years and I still remember times when I felt that I had not been as forebearing as I might have been, but forget the times I was. It’s the same remembering my husband, could I have been more patient, sympathetic, tolerant, insert adjective of choice. I didn’t have years of struggle but neither did I have the years of at least a semblance of a life. It all went downhill relatively quickly. Enduring is key and the hardest thing in the world to achieve, inner peace helps but I find that difficult too.

 

[canary]

I think a lot of people with dementia go down really quickly at the end - I know mum did. She had been in her care home for well over two years and had settled well and seemed fairly stable, but the end came so fast (although she lingered before the final end). I suspect that this decline had already started before Nick moved to the care home and the move shone a cruel light on the true level of the progression. I think it was only you propping things up that stopped you seeing how bad things had become. Im sure the deterioration was nothing to do with you.

 

[PalSal]

Yes thanks for your comments, TP friends. I think "propping things up " is exactly what I did for many of the last years. But it did work.....only I could no longer do it. Thanks to all for your comments and support.