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sept 21

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
Good morning TP friends,
Two nights of sound sleep for me. What a simple delight.
Yes, well the actual day did not go as well as I had hoped. The nurse (who is the head of the dementia floor) was not on duty as she said she would be. They must have been having some kind of staff meeting on Monday. So actually handing him over was not very smooth and I was quite upset. Because I could have waited for another day.
My daughter phoned on Tuesday to find out how things went. Monday night he woke up at 2 am and did not go back to sleep, so they phoned the internist and got some meds to help him sleep. The doctor phoned me to tell me that they have a limited to supply to whatever they are going to give him to help, but it is not a long term solution. Merely to help him settle in.
Then the nurse phoned me and apologized for the less than smooth handover. I would never have complained to them, but my daughter (who is a Dr.) had no problem addressing the issues and clarifying things for them which I guess is good. My Nicky has a strong advocate in our Mimi. It is difficult as my German is high German and not the local dialect, and in time so stress it is difficult to communicate. Nicky barely speaks anymore.....but that they can deal with.
So, in the afternoon, I dropped off 16 individual cups of Movenpick ice cream. And some more boxes of Scottish shortbreads which he loves. I have told them that he likes his ice cream every night before going to bed.
I spent the morning going over the finances again with the lady from the local government, to see what help if any we will receive. (one has six months to do this paperwork) But as I had been worried about this forever, I want to know what help I will receive and plan as best as I can for the future. I will let things settled and self pay , just have to see where it ends up. His going into care was always what I wanted to avoid financially, but professional care is now required and I am at long last ready to accept that my life will change too. As keeping essentially two households, his care home and our home, running is going to be expensive. We had a comfortable life as long as I could keep caring for him at home. Now he will have what he needs, and the truth is I do not know what I need, not as much as when I was young.
I am looking forward to seeing him on Friday. The care-home asked me to stay away until then. I am surprised how emotional I am on and off throughout the day, it comes in waves. And I am not thinking how bad the last few years has been only about how he used to be......and then I get so very, very sad.
 

canary

Registered User
Feb 25, 2014
13,663
South coast
And I am not thinking how bad the last few years has been only about how he used to be......and then I get so very, very sad.
Of course you are - it is to be expected. Moving into residential care is a huge milestone in caring and is always accompanied by guilt, doubt and second guessing ourselves. What we want is our old OH back and it is difficult to be reconciled to the fact that it is not going to happen. Your head knows this, but it will take a while for your heart to catch up.

Im glad you are sleeping now
(((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
 

Grahamstown

Registered User
Jan 12, 2018
1,724
80
East of England
My heartfelt good wishes to you in this next stage of your life and for that of your dear husband, for whom you have given your all. It’s a continuum but in different places and because of his severe difficulties it seems that it is the right place. Grieving for what could have been is one of the worst aspects of this disease and I can empathise with that. There is no answer for that but to examine the grief and build up some immunity to the pain, not allowing it too much space in your life and gradually it is not allowed to dominate.
 

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
you have made the decision out of love for your OH. i still have mine at home but even losing him bit by bit is like grieving and you have no doubt felt that before him going to the home and will probably feel more but you are still caring for him and loving him with the icecream he likes and the shortbread. hope he settles and you have more good nights sleep.
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
I have now had 5 nights of sleep which is restorative.
My youngest son and I visited Nicky yesterday for an hour. It went amazingly well and he sat with us in his room for an hour. He hugged us and told us how wonderful it was to see us. Forever my beautiful English gentleman. They brought us coffee in his room and we had some of his treats. I pretty much fell apart afterwards and today I am feeling really sad and weepy.
The chief nurse of the floor visited with us for about 45 hours and talked about a few things to clarify again. She feels it will just take time for him to join the routine there. But she commented on how polite he is. It has taken time for the entire staff (all the shifts) to come to grips with the degree of his disabilities. She said because he looks so good and is younger than most patients (one woman is 56) , they were a bit surprised by the level of needs he has. I do not understand why they are surprised I have filled out so many forms and spoken with so many of the staff in this process....but it is what it is. The staff too needs time to come up to speed with his needs requirement. It will all happen in good time.
In the meantime, I am making some photo albums for him to have in his room. Perhaps the nursing staff can talk to him about his pictures and his life.
They have asked me to limit my visits to once or twice a week while he adjusts. So I will go again mid week. I just pray that eventually I can visit everyday and perhaps eventually take him out of the home for our walks. But at the moment they do not want me too.

I would be very interested to hear how those of you have made the switch to care home are handling that? How often are you visiting? How long do you stay?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,962
Kent
Hello @PalSal

I visited every other day and our son visited on Sundays.

I used to go around !0-11am and leave as lunch was served, or go after lunch and stay until tea time. Meal times were a distraction and helped me leave without upset.
In the beginning I was offered lunch. If my husband was upset I accepted but decided this was not a good practice so avoided meal times.

My husband was always in the communal sitting room because I had stipulated I did not want him alone in his room so I left my coat in his room and eventually I think he thought I lived there.

I stayed a coupe of hours at least and included other residents in my visits. This is because I hoped it would help my husband feel among friends and not isolated.

Everyone has different needs and it takes a while to work out the best routine.

In the beginning, until I trusted the staff, I visited at unexpected times just to make sure no shop window was being dressed.
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
Hello @PalSal

I visited every other day and our son visited on Sundays.

I used to go around !0-11am and leave as lunch was served, or go after lunch and stay until tea time. Meal times were a distraction and helped me leave without upset.
In the beginning I was offered lunch. If my husband was upset I accepted but decided this was not a good practice so avoided meal times.

My husband was always in the communal sitting room because I had stipulated I did not want him alone in his room so I left my coat in his room and eventually I think he thought I lived there.

I stayed a coupe of hours at least and included other residents in my visits. This is because I hoped it would help my husband feel among friends and not isolated.

Everyone has different needs and it takes a while to work out the best routine.

In the beginning, until I trusted the staff, I visited at unexpected times just to make sure no shop window was being dressed.
Dear Granny G,
Your advice along this journey has been invaluable. Thank you so much for telling me exactly what you did and how you handled the adjustment to the care home. I think every other day should be my goal......
Today I am making enchiladas (one of Nick's favorite meals) and will take him a few.
All the best.
Sally
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
I had another visit yesterday on my own. I made homemade enchiladas , which Nick loves. So, I took over three to him at about 10:30 am. He was pleased to see me, but he did not cry or anything. We sat on the big terrace and he ate an early lunch of enchiladas. Afterwards I tried to engage him in the 3 big photo albums I had made for him over the weekend. But he is really beyond all of that. But it will be fun for visitors to look at with him, something to engage in.
As the nurses had told me. He was "helping" them in the nursing staff room when I arrived. They let him sit with them when he wants company. He is used to being around a busy woman watching activities and it seems that is where he is most comfortable. They say he is walking the halls with to other "guests" on occasion.
Nicky was not all that interested in my being there. The initial delight in my arrival just passed to a "reboot" and he was more interested in the cats. I am delighted he is not longing for me,, and somewhat pleased he is indifferent to me.
He was well groomed and they were not expecting me so that made me happy. His room was being cleaned when I arrived.
The nurse was quite clear his evenings are bad.....but that is just the way it is. They seem to be handling the situation and the disease. So, I am content. I am feeling much less emotional after only a week. It is clear that he is much more far down the road than I thought, he will be accessed for care level for the insurance company based on what the nurses have to do for him for a month. That will be very interesting.
The important thing is he is not ever alone. He seems to feel safe.
And I am much less emotional with 8 to 10 hours sleep each night.
I was so glad to see him and he has deteriorated so much over the last year but I was just too close to it all to see. He is now getting what I could no longer provide, and I do not have to worry that I placed him there too soon. It really was time I was just having difficulty seeing it.
I stayed an hour and 45 minutes but it could easily have been 15 minutes.
Thanks for all your support dear friends. I will visit him again on Friday. The children will visit him next week and I am off to Venice for a week.
 

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
I had another visit yesterday on my own. I made homemade enchiladas , which Nick loves. So, I took over three to him at about 10:30 am. He was pleased to see me, but he did not cry or anything. We sat on the big terrace and he ate an early lunch of enchiladas. Afterwards I tried to engage him in the 3 big photo albums I had made for him over the weekend. But he is really beyond all of that. But it will be fun for visitors to look at with him, something to engage in.
As the nurses had told me. He was "helping" them in the nursing staff room when I arrived. They let him sit with them when he wants company. He is used to being around a busy woman watching activities and it seems that is where he is most comfortable. They say he is walking the halls with to other "guests" on occasion.
Nicky was not all that interested in my being there. The initial delight in my arrival just passed to a "reboot" and he was more interested in the cats. I am delighted he is not longing for me,, and somewhat pleased he is indifferent to me.
He was well groomed and they were not expecting me so that made me happy. His room was being cleaned when I arrived.
The nurse was quite clear his evenings are bad.....but that is just the way it is. They seem to be handling the situation and the disease. So, I am content. I am feeling much less emotional after only a week. It is clear that he is much more far down the road than I thought, he will be accessed for care level for the insurance company based on what the nurses have to do for him for a month. That will be very interesting.
The important thing is he is not ever alone. He seems to feel safe.
And I am much less emotional with 8 to 10 hours sleep each night.
I was so glad to see him and he has deteriorated so much over the last year but I was just too close to it all to see. He is now getting what I could no longer provide, and I do not have to worry that I placed him there too soon. It really was time I was just having difficulty seeing it.
I stayed an hour and 45 minutes but it could easily have been 15 minutes.
Thanks for all your support dear friends. I will visit him again on Friday. The children will visit him next week and I am off to Venice for a week.
so glad its working out for the best, enjoy your trip to venice
 

Sarasa

Registered User
Apr 13, 2018
1,846
So glad the first week went well, that you are getting some much needed sleep @PalSal and that you feel more positive about things.
Care homes in Switzerland obviously don't have the same issues as British ones have over the problems with Covid.
 

None the Wiser

Registered User
Feb 3, 2020
114
So pleased to hear that you’re getting some sleep and that your OH is settling. I’m envious that you can visit. I’ve just had to take my husband out of respite care as he wasn’t settling and didn’t sleep at all for 4 nights. He is very very nearly at the stage where I think he would benefit from permanent residential care, but I’m very reluctant indeed as many of our care homes aren’t allowing any visiting, or are on strict once a week booked visiting lasting a maximum of 45mins. I’m not sure how I’m going to mange for the next few months, but having him in respite and knowing how very anxious he was really didn’t give me any break.
I’m sure you will have times when you grieve, but your visits will keep you connected.
The financial side of things is yet another hurdle. So difficult when we have no idea how long residential care will be needed.
Good luck with your newly configured life.
 

Grahamstown

Registered User
Jan 12, 2018
1,724
80
East of England
I am off to Venice for a week.
I had a week in Venice for the first week of September. It was very restorative and a mini pilgrimage for my husband where we had been together so many times, partly for his work. It was painful at times but found the nature of the city, especially so quiet, that it was soothing. I wandered at will, had lovely food and found the people, mostly locals, very kind and pleased to see me. Have a wonderful time.
 

Jaded'n'faded

Registered User
Jan 23, 2019
947
High Peak
It can be a shock to see how a loved one behaves in a home, particularly if they are not aware you are there. It makes you realise how much you were actually 'propping them up' before and that in reality they are worse than you thought.

Take heart, @PalSal , at least you know now that your decision wasn't 'too soon'.

I hope you have a wonderful trip to Venice :)
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
Thanks TP friends. I did not sleep last night too much coffee during the day. I must be aware of those kinds of things as it makes for a very hard day today.
I dropped in again on Nick on Wednesday. It was ok. He and I had coffee on the terrace and some Swiss bakery treats. I stayed about 45 minutes then went on my way. We had some hugs and I held his hand in the sunshine . He wanted to tell me about something he was seeing off in the distance but he could not find the words. But I just nodded and acted like I understood. It is so easy to be kind and loving in this environment, I am starting to feel the relief of not having to care daily, which is helping to remember that I can direct love his way when I am with him.
Take care and stay healthy all.
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
Hello friends,
I had a great trip to Venice. I am now home and visiting the nursing home daily.
As with other members, I am at the moment standing by as various drugs are administered to help the staff with his behaviors which I coped with so many years without drugs, primarily with exercise. But in the end exercise alone, did not alleviate his high levels of anxiety fear and confusion.
We went to his trusted neuropsychiatrist yesterday, who was unhappy with the drug which was given by the young GP when the nursing staff contacted the GP for something to soothe and settle him at night. That has now been changed and will no longer be used. The nursing staff and our old family friend and geriatric specialist are happier with another drug. Which we will now try. But with the drugs it is hit or miss I guess.
I was warned and accepted that there will be side effects from the drugs......we can already see it with the risperidone - which is a more halted gait, and Parkinson like hesitation. But the intense anxiety and fear is lessened.
I am trusting the professionals....we are a long time into this disease process and I do not expect miracles. My goal is his comfort physically and mentally as best they can achieve. Unfortuantely that comes with side effects.
Nicky is always happy to see me , tells me he loves me and wants to be cuddled. We had a nap together one day in his small bed. Since my return from Italy, I am visiting daily and taking him for small walks in the park and doing some local errands like the post office together and a bakery coffee. Now that I am not sleep deprived I can feel and behave lovingly. Life is so much better someone else handles the dirty pants, the constant going to the toilet and all the endless care which is required.
Nicky looked pretty good when I took him out yesterday to the doctor. They had cleaned him up well and he was presentable.....not as spiffy as when I took care of him but all was good.
It was our youngest son, Jamie's 28th birthday. Jamie came with me to help as I was worried that Nick would find it difficult to get into the car. He did not. After the doctors visit we went out for cake and coffee. Jamie was about 11 years old when his dad was diagnosed. He has grown up with the disease and watching his father keep deteriorating with time. It has not been easy but he is a good son and has been so helpful to me since his return from university in England about 5 years ago.

So for those folks who are in the medicine dilemma , I can only say I am going for Nicky`s mental comfort......seeing him in such a high and intense state of anxiety the last months, when I could no longer give him any comfort , makes me aware that the nursing staff have their hands full with him. I much trust the process and hope that eventually we reach the goal that our trusted Prof wants which is only risperidone. But we will have to wait and see.
 

TNJJ

Registered User
May 7, 2019
1,788
cornwall
Hello friends,
I had a great trip to Venice. I am now home and visiting the nursing home daily.
As with other members, I am at the moment standing by as various drugs are administered to help the staff with his behaviors which I coped with so many years without drugs, primarily with exercise. But in the end exercise alone, did not alleviate his high levels of anxiety fear and confusion.
We went to his trusted neuropsychiatrist yesterday, who was unhappy with the drug which was given by the young GP when the nursing staff contacted the GP for something to soothe and settle him at night. That has now been changed and will no longer be used. The nursing staff and our old family friend and geriatric specialist are happier with another drug. Which we will now try. But with the drugs it is hit or miss I guess.
I was warned and accepted that there will be side effects from the drugs......we can already see it with the risperidone - which is a more halted gait, and Parkinson like hesitation. But the intense anxiety and fear is lessened.
I am trusting the professionals....we are a long time into this disease process and I do not expect miracles. My goal is his comfort physically and mentally as best they can achieve. Unfortuantely that comes with side effects.
Nicky is always happy to see me , tells me he loves me and wants to be cuddled. We had a nap together one day in his small bed. Since my return from Italy, I am visiting daily and taking him for small walks in the park and doing some local errands like the post office together and a bakery coffee. Now that I am not sleep deprived I can feel and behave lovingly. Life is so much better someone else handles the dirty pants, the constant going to the toilet and all the endless care which is required.
Nicky looked pretty good when I took him out yesterday to the doctor. They had cleaned him up well and he was presentable.....not as spiffy as when I took care of him but all was good.
It was our youngest son, Jamie's 28th birthday. Jamie came with me to help as I was worried that Nick would find it difficult to get into the car. He did not. After the doctors visit we went out for cake and coffee. Jamie was about 11 years old when his dad was diagnosed. He has grown up with the disease and watching his father keep deteriorating with time. It has not been easy but he is a good son and has been so helpful to me since his return from university in England about 5 years ago.

So for those folks who are in the medicine dilemma , I can only say I am going for Nicky`s mental comfort......seeing him in such a high and intense state of anxiety the last months, when I could no longer give him any comfort , makes me aware that the nursing staff have their hands full with him. I much trust the process and hope that eventually we reach the goal that our trusted Prof wants which is only risperidone. But we will have to wait and see.
Hi! I have always wanted to go to Venice.. Lovely..
I’m glad you have had some time out as it’s been a long time coming.
It’s good to hear Nicky has settled in and is doing as well as can be expected. 😀
 

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
glad you enjoyed venice. you sound much happier now than what you were when you were doing all the caring. youve become a wife again without any of the pressures you were experiencing before he went into care. at least you can visit every day and have a bit of life yourself. i cant remember if its respite or permanent but hopefully its permanent. you went that extra mile and then some so enjoy your visits and take care jenny
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
Thanks Jenny. Yes, it is good to feel compassion and love again towards him. Living alone is a new experience for me. I have not really settled into it yet. But I am enjoying not having to cook at all.....just eating when and if I want too.
 

marionq

Registered User
Apr 24, 2013
6,158
Scotland
All you wrote @PalSal was how I felt when John reached that stage. It is truly heart wrenching but when we have given our best and are exhausted there is no more to give.

I hope things have worked out for you both.
 

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