sept 21

[PalSal]

Two months today Nick has been living in the CH
As I have said the experience and reality of the CH did not align with my expectations.
Last night, a few family and friends gathered outside at the home of a couple who have hosted our American Thanksgiving potluck feast for the last 25 years. Only 10 people allowed to gather outside at a private home and we had beverages outside under the half moonlight, for about one hour and 10 minutes. We all brought our usual specialties, I made the pumpkin and pecan pies. I felt very outside the group, a bit of an alien, somehow. I am sure it is just me. The everything was divided up and we each took the feast to our own homes for eating. I ate with my son and my daughter's little family. So, that was lovely.

But everything celebratory seems odd and strange without Nick, he is alive but not a part of life. I am not sure how to deal with it. It feels rather false to be joyful without him especially while it does not seem possible that he will have any joy again. Many of on TP wrote and share about the issues of going on with our life. I really thought I had always done this over the last years. Last year Nick did not attend this celebration because of incontinence issues, and I left early last year as it was painful. It is different each holiday wondering what we are to do.
What do you do when your OH is in a CH? Unless he is vastly improved by Christmas there is no way he can come to a Christmas feast with the children and grandchildren even the current scaled back version....but perhaps he will be able too.. I cannot imagine. Do some of you just spend the day at the CH with your OH?

 

[Susan11]

Two months today Nick has been living in the CH
As I have said the experience and reality of the CH did not align with my expectations.
Last night, a few family and friends gathered outside at the home of a couple who have hosted our American Thanksgiving potluck feast for the last 25 years. Only 10 people allowed to gather outside at a private home and we had beverages outside under the half moonlight, for about one hour and 10 minutes. We all brought our usual specialties, I made the pumpkin and pecan pies. I felt very outside the group, a bit of an alien, somehow. I am sure it is just me. The everything was divided up and we each took the feast to our own homes for eating. I ate with my son and my daughter's little family. So, that was lovely.

But everything celebratory seems odd and strange without Nick, he is alive but not a part of life. I am not sure how to deal with it. It feels rather false to be joyful without him especially while it does not seem possible that he will have any joy again. Many of on TP wrote and share about the issues of going on with our life. I really thought I had always done this over the last years. Last year Nick did not attend this celebration because of incontinence issues, and I left early last year as it was painful. It is different each holiday wondering what we are to do.
What do you do when your OH is in a CH? Unless he is vastly improved by Christmas there is no way he can come to a Christmas feast with the children and grandchildren even the current scaled back version....but perhaps he will be able too.. I cannot imagine. Do some of you just spend the day at the CH with your OH?

It's difficult. I spent Christmas eve with my daughter, her partner and son at the CH. They put on a lovely buffet lunch in the family room which has been decorated beautifully. We then spent Christmas day celebrating at home whilst Mum enjoyed all the Christmas activities and lunch at the CH. One of the carers rang in the evening to tell me Mum had joined in with everything and had enjoyed her Christmas day. I told Mum how lucky she was to have two Christmas Days. Susan

 

[PalSal]

Here in Switzerland the primary celebration is on Christmas Eve. So, my children go to their Swiss partners/ spouses for that day and evening. We normally have Christmas morning here at my house then go to dear friends for the Christmas lunch and celebrations (English style, Turkey, white sauce, Brussels Sprouts etc) I grow up with a different menu for Christmas (as we have turkey for Thanksgiving).
Christmas at the CH for Nick would not be much fun, it is an isolating experience for him in so many ways.....language primarily. But at the moment he can barely walk. He would have to improve greatly to consider bringing him to an event. And the grandchildren are not allowed to visit.

 

[margherita]

Hi PalSal, I am sorry about Nick's deterioration and even more sorry about your sadness and guilty feelings.
Nick would have deteriorated even if he had not been moved to a care home. He has had dementia for twenty years and worsening is the unavoidable development of his desease. Thank goodness he is not at home. How would you have coped with it?
((((hugs))))

 

[PalSal]

Hi PalSal, I am sorry about Nick's deterioration and even more sorry about your sadness and guilty feelings.
Nick would have deteriorated even if he had not been moved to a care home. He has had dementia for twenty years and worsening is the unavoidable development of his desease. Thank goodness he is not at home. How would you have coped with it?
((((hugs))))

Thanks Margherita, I am sure you are right. But living out the last years of the this long goodbye with all its ramifications is hard. We all at TP have this burden..
I was just reading in another post that someone husband`s is threatening suicide. Here in Switzerland assisted suicide was an option in the early stages of Alzheimers , but a person must be fully aware of the decision.(You may remember the publicity about the assisted suicide of the UK auther Terry Prachett, ) I personally would take such a considered path.....I think, but I have not been put to the test. Suicide would be a different path, different suffering.
Nick did not want that, he never looked at where the disease would take us both. He was in complete denial regarding the pain and suffering and financial ruin we would have to endure. I am sorry to say it was very selfish of him, but it was his choice to want to go on ......now he has no quality of life, it was only with me that he had a quality of life which was good, and I was no longer strong enough to give it any longer.
I made the choice to support his decision, and as I have said here many times, he was part of all his children graduating from uni (the youngest middle school, high school & uni!), two weddings and now eight grandchildren, but he was only aware of the first two grandchildren....he was too far gone for the rest. So, he did live for a long time a fairly full life......
I just know I have no answers to anything.
I miss my music ....the sinfonie, my classical choir and my rock band. I am spending two to three hours each day with Nick at the car home. Trying to help my daughter with the children a few times each week and now Jamie (our youngest ) is at last wanting to learn to drive so we are driving together a few times each week. I am playing Mahjong every two weeks, it is a reason to put on my makeup and get dressed properly, to see my three friends.
It is difficult times for everyone. Is your husband still at home with you?

 

[PalSal]

Happy New Year TP friends.
I am going through the motions of life. With the COVID, it is amazing but I am still able to visit Nick everyday. I can now take him outside and he barely walks, but I get him some fresh air and a little outside movement most days. Yesterday he did not wish to go. My cold hands signalled to him it was cold outside. So, he just slept in his chair and I played solitaire.
Nick and his home and all its workers will be vaccinated tomorrow, and then again in three weeks. That should make things less problematic.

No real news, I just feel very numb and introspective. Do my best to find moments of joy, some days are better than others, usually when I get a good long hike...those are the best days.
Hope you are all staying well and healthy.

 

[canary]

Happy New Year to you too. I am hoping that 2021 will be a better year.
I am glad that Nick will be getting the vaccine so soon, that will be one less worry for you.

Please look after yourself. You are grieving for the Nick you are losing
((((((((((((((((((((hugs))))))))))))

 

[PalSal]

Dear TP friends,
I am not posting or even reading the posts of others as often.
Nick has now been in care since Sept 21, 2021. It has been a difficult transition where like many carers has been one of doubt and questions. I really felt that I was well informed, but my expectations about how it would be were still quite unrealistic. And the transition into care plummeted Nick beyond what I had imagined.
Yesterday was his mothers 94th birthday. His sister organized a zoom call. His mom is bright and although starting to fade a bit, she is in good physical health her hearing is very poor, but she still enjoys her reading and life. The Corona life limitations have been difficult, but she has managed to stay in good spirits. His mother told me to give him her love, I will. I am not sure if he will understand….I guess he won’t. But where is this all in the scheme of things. His non existence. I go almost everyday to the nursing home, (I can go into his room and visit, but am not allowed in the common rooms) I confess I am spending less and less time with him and he drifts further and further from me. I usually go and place hot packs on his neck then put him in a recliner in his room, turn on music, and he is asleep. I sit and play solitaire, or read. I spend an hour to two hours. I pat his hand and am just with him, he sleeps and is restful. He is well cared for, I am grateful for that. But of course, he is not loved but cared for by the workers. I just go, I am not sure how much love I feel either but I feel devotion and duty.
I find it difficult to understand what the family away (or even here wish to know) his siblings, his children in Norway. what do people really wish to know about our life now. I do not know if people really want or wish to know the reality and the way it is for Nick and I now. I am fine and getting plenty of sleep at last, but the family gathering yesterday makes me aware of the long and lonely experience, Nick and I have had together. We did try to make the best of things for a long time. Things are ok for me, but I still feel like life is on hold. But I guess everyone feels that way with this COVID- and with placing a loved one into care.

 

[canary]

Hi @PalSal

Its good to have your update and hear that Nick is being well looked after. Yes, it is a sad and lonely existence and covid is not helping one little bit. I too am in limbo and wondering how long this will go on for. I think the only thing we can do is just take it one day at a time and keep on keeping on.
(((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))

 

[Lawson58]

You have been looking after Nick for so long that it must be difficult coping with his absence. Your long walks took up a lot of your time, time that you spent together. And suddenly you are visiting him in care, and he is not responding. You go home under Covid conditions and need to fill your days, fill the gaps that Nick once occupied. I can't imagine what that feels like but I have to say that you are discovering how much your life has changed, changed as far as Covid will allow you to do so

Perhaps this is a time for you to rest for a while, find peace after all your hard work and just simply BE.

 

[marionq]

@PalSal it is always sad when a long-standing member of TP is in need of comfort and we cannot meet that need. Now I am on my own I am certainly rediscovering me but a decade or so too late! Try and combine as best you can your duty to Nick and your responsibility to yourself to stay well and find a new and different happiness.

You will be asking yourself many questions and examining your memories of how things ended up where they are. That is inevitable but you are very resourceful and it is essential that you don’t let introspection get you down. Smarty pants here has done that so often and it is not a good idea.

Best wishes.

 

[PalSal]

Dear friends,
Thanks for your response. Yes, I try to stay connected and I am grateful that I am still relatively young 66. The thing is I ponder, what do people really want to know? The reality of my life, or do that want to think that now that I no longer care for Nicky 24 hours a day I am free .....but of course we all know that is not what happens . It is really too much for most folks to face such a change in an individual that they love.
So, I do what I can to stay with it all despite this COVID. After reading your lovely messages I booked a hot stone massage. Now I am relaxed and feel very cared for myself.
I am walking in the woods and mountains a few times each week. But very little music or art at the moment.
But I am grateful to Great OutDoors. Do my best to find joyful moments in everyday ....and it works most of the time....But this long haul isolation is so difficult on everyone. I do hope things get better....

 

[PalSal]

Nick on Saturday.

 

[Lone Wolf]

The thing is I ponder, what do people really want to know? The reality of my life, or do that want to think that now that I no longer care for Nicky 24 hours a day I am free .....but of course we all know that is not what happens .

Hi @PalSal,

In my experience people do not really want to know the reality and always underestimate not only the impact upon the sufferer but also the impact upon the partner carer or family member carer. This applies to even the most empathetic of people. As so many on this forum have indicated, it is only those of us closely involved who really understands the impact. Which only intensifies the absolute sense of loneliness that many of us feel from the situation that we and our loved ones with dementia are in. And to make things worse, here in the UK many of us, including myself, have been denied any form of normal visiting for nearly 12 months now. So I cannot even do the only thing that I want to do, which is to be with my loved one throughout this difficult journey.

I really enjoyed the photos that you have posted. Ann, my English partner of 36 years, and I used to spend spring of every year in Switzerland for many years until sadly her increasing Alzheimer's put an end to our annual trip. We loved to walk along the myriad Wanderweg, with spring always such a lovely time of the year. But despite having a Swiss parent, I always found that after about 6 weeks I began to feel suffocated by the Swiss culture and was more than happy to return to the UK. Just little things like disapproving stares in the supermarket, or from crossing the road against a red light or even on a number of occasions putting rubbish in a street bin would you believe!!I don't know whether there is an element of the culture that exacerbates your feeling of isolation.

 

[Izzy]

Such a touching photo @PalSal.

 

[PalSal]

Hi @PalSal,

In my experience people do not really want to know the reality and always underestimate not only the impact upon the sufferer but also the impact upon the partner carer or family member carer. This applies to even the most empathetic of people. As so many on this forum have indicated, it is only those of us closely involved who really understands the impact. Which only intensifies the absolute sense of loneliness that many of us feel from the situation that we and our loved ones with dementia are in. And to make things worse, here in the UK many of us, including myself, have been denied any form of normal visiting for nearly 12 months now. So I cannot even do the only thing that I want to do, which is to be with my loved one throughout this difficult journey.

I really enjoyed the photos that you have posted. Ann, my English partner of 36 years, and I used to spend spring of every year in Switzerland for many years until sadly her increasing Alzheimer's put an end to our annual trip. We loved to walk along the myriad Wanderweg, with spring always such a lovely time of the year. But despite having a Swiss parent, I always found that after about 6 weeks I began to feel suffocated by the Swiss culture and was more than happy to return to the UK. Just little things like disapproving stares in the supermarket, or from crossing the road against a red light or even on a number of occasions putting rubbish in a street bin would you believe!!I don't know whether there is an element of the culture that exacerbates your feeling of isolation.

No not really I have adjusted to the Swiss sense of order. But it is true, that like many Europeans the Swiss tend to live their lives in one place (global travelers who return home eventually) . So, they have plenty of old friends and have little need to expand their personal circles it is hard to create friendships with the Swiss. I have a few good friends. But it is a different story for my children and grandchildren who are Swiss. I am the outsider.
But there are many advantages to my life here. Number one being close to my children.

 

[margherita]

they have plenty of old friends and have little need to expand their personal circles it is hard to create friendships with the Swiss. I have a few good friends. But it is a different story for my children and grandchildren who are Swiss. I am the outsider

Hi @PalSal , when I retired in 2014 , I moved to the small village where my husband had chosen to live after he had retired some years before.
I didn't arrive here from far away ( 150 km) , I am not a foreigner, yet I couldn't make friends with anyone , despite being a sociable person.
It is not they don't want me, they simply don't need me.

 

[PalSal]

Such a touching photo @PalSal.

Yes, She loves her Punka.

Hi @PalSal , when I retired in 2014 , I moved to the small village where my husband had chosen to live after he had retired some years before.
I didn't arrive here from far away ( 150 km) , I am not a foreigner, yet I couldn't make friends with anyone , despite being a sociable person.
It is not they don't want me, they simply don't need me.

Yes that is just how it is. My neighbors took 10 years before they spoke to me, now we are "du" ce.

 

[PalSal]

Hello TP friends,
We are now 5 months into the care home.
I go, Nick doesn't really seem to know me. Some days I am able to be of some comfort, others there seems to be no indication that I am more than another unknown person moving around him.
He seems well cared for. I go in most days for 2 to 3 hours., really turns out to be 5 days each week.
I am no longer trying to take him outside as he does not get any joy from it. He is overwhelmed by noises , the excitement of everyday life. He seems to be least anxious in the enclosed walls of the dementia ward. So, depressing.
So, I just go to his room (very grateful to go to his room) and sit and read or play solitaire or do some written correspondence. I confess I do not try to talk to him, what is the point, I no longer understand what he mumbles and I have nothing to say. It a sad situation for us both.
He is now only eating baby mushy food and drinking protein shakes. He seems to prefer sweet things not the savories. He is extremely thin now.
His perception is very bad and he walks into walls and plate glass windows even when I am right there with him.(I am no longer allowed to walk with him in the halls, I am hoping that will come back soon as all of us get vaccinated) I often find he has shuffled himself into a corner, where he is just standing when I arrive. I have no idea how long they leave him like this. But it happens when I am there too. And the staff have much to do. I do not think they leave him like that for too long.....I hope. But it is tempting as he cannot hurt himself in a corner.
He has some padding on his hips, as he has had a number of falls. Not really falls once again perception problems. He tries to sit down and misses the chair or couch and goes down on to the fall. Or at least that is what they tell me is happening. I am aware that he can no longer sit down on his own as it happens when I am there. The chair recliner we bought at Christmas lifts up and meets him which is good as he no longer wants to sit down, and becoming very afraid and calls out as you sit him in a chair.
I called a friend whose husband is not demented but living in a home as his feet have been amputated and he has diabetes. He has been in a bad way for a long time and in care for at least three or four years. She and I had a good moan last night. In the end is it is still on us to go and support our husbands as no one else will. One good friend of ours did visit Nick two times but was overwhelmed by Nick's condition. The children do not like to go and are too busy. So, it is still my job. I do not have to do it 24/7 which is a blessing and I am branching out a little bit now. Doing a little more with my life, but still so limited due to the virus.
I pray from him to die so that we can be released from this long long long hopeless situation. But it is not up to me , and his body kept so strong by years of rigorous walking and hiking, is not going to give up easily. His body is definately weaker, but his heart is still strong I believe. So, I cannot guess when he will be released from this world, which has no quality of life. A sad and reduced existence, for such a lovely man.

 

[notsogooddtr]

You sound very sad, understandably so. Do take care of yourself, stress, worry and grief can have such an impact on our health