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Another day.......

PalSal

Registered User
Dec 4, 2011
908
Pratteln Switzerland
Each experience colors our design. Our pain and sorrow and joy give the depth that one-day will move us to say, "I see, I understand."
I will be grateful for the experiences today that give my tapestry its beauty.


Hi TP friends,
I am here reading posts of other partners and reflecting about my life. Once again, I say to newcomers....I have lived with Nick and his Alzheimers all these years because of the support and good advice I got early. Get help early, be willing to bring outside carers into the house to help, before you actually need them. I struggled to find funding from the Swiss gov't for help, and I have used our savings to so that I could have extra help. It has been worth the money and of course, it has proved less expensive than having Nick live in a care home. (which I believe could eventually happen, I just take it one day at a time) Although, family and friends have been loving and supportive, their reliability to help consistently and reliably is just not possible. I have had to create a support group of paid employees to live this life at home for 18 years.

Wednesday evening, I had two musicians friends over for dinner. It was lovely in the end. But I worked so hard to make it lovely and spent so much energy on a dinner for three of us, I think it may be the last time I entertain at home. I am a perfectionist and so there is always internal pressure to have everything just so. I did not do my normal cooking and used recipes as one of the women is a vegetarian and gluten free. I made it harder than it should have been. ( and to think 20 years ago I cooked for a party at home for 100 people in a marquee in the garden-doing the cooking myself and having staff for serving and cleaning up. I did all the flowers, etc)
It was difficult preparing all the food for just the three of us, it took away from my focus from Nick's needs . He notices somehow when my attention is directed elsewhere. And cleaning the house.....as it rained and we had to social distance inside which was not the plan. I had hoped to eat in the garden. But the conversations were interesting and as these are friends who I do not see very often, we had much to catch up on.

Nick's favorite carer, lovely Andrea of Windsor, came for the evening. In the past, when I have had dinner parties, she sits with him at the table with the guests and takes care of him. But this time, I sent her out with him on a walk and then they went to a local restaurant and ate outside under a covered terrace. They both enjoyed their evening out. She then gave him his meds, and brought him home, showered and into his pjs, then into bed about 9:30. My guests never saw him. She then came up and joined us for dessert and coffee. She is such a dear girl , and with her support I can enjoy my life, as it was in the old days.....just sadly not with Nicky as he was.

Will I do this again? Not for awhile. I will see my very dearest friends and family and eat with them, as they are easily pleased and I do not have to fall into my perfectionism to enjoy their company. It takes a lot of work to organize a "normal" life, the COVID has made me aware of this. Not doing much of anything anymore, it the easier way. And truth be told I am older, now 66 and acceptance of quieter life is what is required.

Yesterday, we were back to our normal routine, breakfast, hike, housework and evening TV. It is hard work to stay part of the stream of life, between caring for Nicky and COVID19 restrictions, But today this is everyone's way of life. But I am making a few plans. I will go on a two day hike in the mountains with a woman friend, August 9 and 10th. Actually staying in a small hotel in the mountains, providing nothing changes with restrictions.
And I have decided to go to the grand opening of the Sinfonieorchester Basel's return to the stage on August 26. It has taken four years for the renovations to be completed to the 18th century building. The audience will be distanced and wear masks. Unfortunately, the program had to be revised , originally they were to play a Mahler symphony with full 110 musicians on stage, but do to Covid the program has been changed. So, it will be Beethoven, Dvorak, Strauss and more. And there will be no gala party as originally planned. But I will have a reason to do my hair, put on my makeup (heavy on the eye makeup above the mask , and wear something beautiful). I am willing to take the risk and hope it happens. I cannot live a life without music.

How are you are able to your lives, as you journey the long goodbye? We each have to cope? there are good days and bad days........unhealthy days and hopeful days. Love to hear from you all about what is up in your lives...
 

None the Wiser

Registered User
Feb 3, 2020
114
Hello @PalSal, I’m fairly new to the forum and am gaining so much from everyone’s posts. You paint such a wonderfully refined picture of your life in Switzerland. One of the things I am grappling with is how to live some kind of interesting and stimulating life whilst caring for my husband. We are both in our sixties, and it is so hard to think that the narrow existence that we are now leading is how it must be for the future. Your dinner party sounds wonderful despite the challenge. Well done for attempting it. You sound as if you have lots of energy. It’s good that you have found someone that you can really trust to look after your husband when you’re away. I am hoping that I can go down this route at some point soon. My husband goes to day care three times a week and although this is welcome time for both of us, it is quite restrictive. By the time I have shopped, or done other household chores it’s time for me to go and collect him. Before COVID19 I was able to see friends for a coffee, and attended my book club once a month, but lockdown put a stop to that. My husband’s condition has deteriorated recently and it’s become more difficult for us to mix socially. We have enjoyed lots of walks during the lockdown period as my husband is reasonably mobile (not climbing though). We are lucky to live in a beautiful part of the south of England with the South Downs and the sea practically on our doorstep.
I will miss going to concerts this year. We would go to several Prom concerts every summer, but even if they were operating this year my husband wouldn’t be able to go as he’s not got the patience,or the social skill, anymore to sit through a full concert. I’m sure you’ll enjoy your concert in Basel despite the changes due to COVID.
Reading your post will inspire me to think a bit more about what we/I can do rather than dwelling so much on what we/I can’t do and what we’ve lost. I do so want to enjoy life. I find having things to look forward to makes a considerable difference. Thank you for your inspiration.
 

PalSal

Registered User
Dec 4, 2011
908
Pratteln Switzerland
@None the Wiser
Thanks for responding.
Each Alzheimer's patient is different....and how long the journey goes depends on the individual. As my Nick's diagnosis was so early it was important that I try to carry on with life for myself and for the children. He was 49 and I was 48, I could not give up living. And in the early years he was very participatory and still good company. But the last seven years it has been a challenge to stay involved and active in my own life . My social life has not really included him for sometime.
When times were difficult, when he got frustrated with his life, when he went thru a period of hallucinating, when he dug in his heels and was incapable of any rational thought (but still looked good to strangers and friends who could not understand what it was like to live with him), refusing to take his Aricept medication and hiding it in a case for months before I discovered he was not swallowing the pills, the sundowning (which is still part of our lives today), the horrible scenes over his inability to drive and loosing his license, not knowing our children anymore, forgetting where he is that this is our home in Switzerland (he no longer has any idea where he is) and asks to go home in the middle of the night in bed..... the Talking Point folks have all been here for me. They have supported me and made sound suggestions and gave me real hands on experience and advice. I have greatly appreciated all that advice.
One very practical example, was the bed. He went thru a period of time when he would get into the bed horizontally. I could not get him to put place himself in the bed. Friends on TP suggested I use a completely different color pillow from the bed sheets. Presto! Magic he got into the bed properly.
He struggles with the food on his plate. My TP friends said, use a white plate and no patterns Presto. He is seeing his food.
These simple practical solutions to situations, helped me solve problems of the moment. I do not expect to be the primary carer forever , but with lots of support and sound advice I keep going.
I have more than one trusted carer. I have two who I can switch back and forth to. A young Eritrean man and a this young British woman.
Now I have a private service that comes in for 1 hour in the evening to bath him and put him into his pjs. This is just since June, there are three women who rotate from this agency.
And when things have been ugly and tough......I have come to this site to moan with folks who understand.
I hope you will find support you need to keep having a life of your own. It is not what we expected of life, but now we know expectations only make us unhappy, we must just live in the moment as best we can.
 

PalSal

Registered User
Dec 4, 2011
908
Pratteln Switzerland
We went to a beautiful neighborhood swimming garden with our grandbabies today. Only about 10 little mommas there with children. Normally there would be a 150 to 200 people there on a beautiful summers day. It was wonderful. We followed the rules . Sadly Nick would not go in the water. He just sat on the blanket but at least he was with us.
And our daughter was happy because he knew who she was today and kissed her. That meant a lot to her.
 

PalSal

Registered User
Dec 4, 2011
908
Pratteln Switzerland
Going today with my daughter to visit the local care home (Altersheim) here in the village we live in. I visited it in January when things were bad. But then corona came and everything changed. I will go with my daughter today to be sure I understand the financial implications correctly. I am getting close to the end again of caring at home, I think.
I have just run out of steam. I am just performing duties required with no affection or love (well sometimes) I am hardly civil to this lovely man, who I loved so deeply. Although, I have lots more help than many people on TP, I am unable to adjust to the constant needs required of someone who has no memory and is losing more and more functions.
No decisions today, just information.
I want my daughter to see where the Alz patients live. It is on the 4th floor of the facility and it is locked. They do have animals on the floor with the patients. (two cats, a little dog which is very nice) But the patients eat and live on this floor. They are taken out for short walks. But do not eat in the beautiful cafeteria which opens on the park. But I would be allowed to take him for walks as often as I would like, as long as he is able.
Of course, being the selfish creature that I am, I am just wondering what will happen to me , as the finances will go to him and the cost of his care. baseline 92 K CHF per year. nursing on top of that. Just talking about these kinds of sums leaves me worried and depressed. This is why I put off such a decision for so long, as I do not know how I will live now. But I am not making a decision today......just getting the facts.
 

Agzy

Registered User
Nov 16, 2016
1,560
Moreton, Wirral. UK.
Another day @PalSal ! Yes, that is how our mornings start but like you although with different surroundings and no care help as yet, I try to seee the positives and make plans that may or may not come to fruition. My next outing will be in my ‘new to me’ little motorhome to a campsite at a place called Pocklington near York. For over two decades Pauline and I caravanned together and have visited Switzerland as well as many other European countries athough Spain and Holland were our favourites for very different reasons. For the past 2 years Pauline has chosen to stay home but always urges me to keep travelling because she knows that without it to look forward too I will struggle to cope. Age and my own slight decline in health meant the caravan had to go and so I exchanged it for the MoHo two weeks before lock down here in the Uk. I think Pauline can cope and have made arrangements fro my family members and a neighbour to look in on her even though I will only be away for three nights. Like you I love to hike and walk but, although the Wirral where I live is beautiful, it cannot compare to the mountains of Switzerland. I do hope you planned break goes well and helps recharge your batteries,
 

PalSal

Registered User
Dec 4, 2011
908
Pratteln Switzerland
Another day @PalSal ! Yes, that is how our mornings start but like you although with different surroundings and no care help as yet, I try to seee the positives and make plans that may or may not come to fruition. My next outing will be in my ‘new to me’ little motorhome to a campsite at a place called Pocklington near York. For over two decades Pauline and I caravanned together and have visited Switzerland as well as many other European countries athough Spain and Holland were our favourites for very different reasons. For the past 2 years Pauline has chosen to stay home but always urges me to keep travelling because she knows that without it to look forward too I will struggle to cope. Age and my own slight decline in health meant the caravan had to go and so I exchanged it for the MoHo two weeks before lock down here in the Uk. I think Pauline can cope and have made arrangements fro my family members and a neighbour to look in on her even though I will only be away for three nights. Like you I love to hike and walk but, although the Wirral where I live is beautiful, it cannot compare to the mountains of Switzerland. I do hope you planned break goes well and helps recharge your batteries,
You too Agzy....get going in the MoHo (not real sure what that is but it sounds fun!)
 

Thethirdmrsc

Registered User
Apr 4, 2018
217
Hi @Agzy i do envy you! I sold our van this week, and it’s off to a new home near Inverness. Hopefully one day I will get another wee one just for me.
 

Agzy

Registered User
Nov 16, 2016
1,560
Moreton, Wirral. UK.
Hi @Agzy i do envy you! I sold our van this week, and it’s off to a new home near Inverness. Hopefully one day I will get another wee one just for me.
@Thethirdmrsc , I kept the caravan and travelled solo in the hope that Pauline would come round to travelling with me again but not to be and it was her that suggested the 2 Berth Bessacar as easier to manoeuvre and handle. Two weeks after picking it up and Lockdown! Very nervous at leaving her since decline but my own mental health is at stake and without travelling for 7 months and being locked downI am really stressed out. I have joined a solo camping and caravanning club and they are brilliant company and support.
 

White Rose

Registered User
Nov 4, 2018
679
Going today with my daughter to visit the local care home (Altersheim)
Hi @PalSal how did you get on at the care home? You can't possibly be called selfish after all you've done and given up for all these years and you're certainly entitled to a decent standard of living, it's a hard decision when it takes such a huge chunk of your income.
Like you I'm thinking the time will come soon for the CH, I was hoping to keep going for a few more months but he's getting so difficult - lately has to be reminded to take his underpants down to go to the toilet and gets very angry if I try to help (result, leaving him to it means wet pants, trousers and floor!). I'd like to be able to take him out for walks when he's in the home but it's not possible in the UK at the moment, it's not even possible to visit the care homes to look around. So I'm hanging on for when the homes are more open to visitors. He's going in for respite again in a couple of weeks, can't wait, I'm so sleep deprived and exhausted from the constant attention he requires!
Did you go for your camping trip in the mountains?
 

None the Wiser

Registered User
Feb 3, 2020
114
lately has to be reminded to take his underpants down to go to the toilet and gets very angry if I try to help (result, leaving him to it means wet pants, trousers and floor!).
Like you @White Rose my husband has just started to need help with his clothing when going to the loo.
( He does need significant help with dressing and undressing) I’m beginning to think that he isn’t far off ( 6 months????) needing a care home especially as he doesn’t know where he is now nor who I am. I’m wondering if it’s better to go into a home whilst still able to join in with activities and possibly make some kind of relationship with others, or should it be delayed until it is no longer possible to manage at home? He seems to need things to do and people around him now. I’m sure in the end it’s a personal and practical/financial decision, but would appreciate hearing others views.
 

PalSal

Registered User
Dec 4, 2011
908
Pratteln Switzerland
Thanks for your input White Rose and None the Wiser. It is a very difficult time, knowing that if I decide to put him into care during Corona, there could be an extended time of no contact. I do have him on the waiting list now. I have no idea when it will open up so I am just going on for now.
I find myself resentful of people who have been loving and supportive all along this journey. My daughter and I have one friend who always makes lemonade from the lemons. In the past, that has been very helpful and I have appreciated her input. But yesterday we visited her (one of two friends whose homes we still visit-( the toileting situation is too disturbing for us to visit many of our old friends). She said well if you have done a great job and the last one or two years have been really hard -like only the last couple of years have been difficult. This has weighted on my min, this morning. One or two years!!! The entire process of losing someone to Alzheimers is such a horrible journey, it is true that his needs have increased over the years to the demanding and taxing levels of care which are where we are today. But the build up to today and this entire long process has drained me, even the early years of just losing his glasses, losing his wallet, losing his keys, the small early obsessions, the hallucination periods, the frustration periods when he wanted to do completely irrational things., whatever! That required my constant assistance......
I felt very lonely again, in that even this wonderful and dear friend does not get it, The long journey and the years of care and service are indeed only understood by those of us who travel it.
 

White Rose

Registered User
Nov 4, 2018
679
I felt very lonely again, in that even this wonderful and dear friend does not get it, The long journey and the years of care and service are indeed only understood by those of us who travel it.
That's so sad that your friend doesn't appreciate what you've been through, does she have memory problems too!! And you've been dealing with it for more years than most, it is an emotional rollercoaster and I wonder if the stress levels that we live with daily will in the future impact our own minds. Glad you have Nick's name down, maybe you can start thinking what to do with your own life now. Myself I'd be glad to sit next to a Scottish loch in a log cabin with a load of books and speak to no-one for a month!!
 

White Rose

Registered User
Nov 4, 2018
679
Like you @White Rose my husband has just started to need help with his clothing when going to the loo.
( He does need significant help with dressing and undressing) I’m beginning to think that he isn’t far off ( 6 months????) needing a care home especially as he doesn’t know where he is now nor who I am. I’m wondering if it’s better to go into a home whilst still able to join in with activities and possibly make some kind of relationship with others, or should it be delayed until it is no longer possible to manage at home? He seems to need things to do and people around him now. I’m sure in the end it’s a personal and practical/financial decision, but would appreciate hearing others views.
It's a difficult one, I too keep thinking 6 months but with the current rate of deterioration I'm not even sure I can keep him home for that long. There's been such a big deterioration in the previous 6 months so what will the next 6 bring. If only a magic wand could be waved to keep them stable but instead it's a guessing game, where's it going to go, what's next and how long till.....? Even the carers who come in when I'm at work struggle with him, he is constantly on the go, doesn't know his limitations and can get angry and impossible to deal with.
 

None the Wiser

Registered User
Feb 3, 2020
114
Myself I'd be glad to sit next to a Scottish loch in a log cabin with a load of books and speak to no-one for a month!!
You may not be on your own @White Rose I may be sitting next to you! I promise I’ll be quiet.🤫
But the build up to today and this entire long process has drained me, even the early years of just losing his glasses, losing his wallet, losing his keys, the small early obsessions, the hallucination periods, the frustration periods when he wanted to do completely irrational things., whatever! That required my constant assistance......
This expresses it so well. One of the difficulties is that I feel guilty expressing my feelings to anyone. I do feel resentment that my life has been taken over by this disease. And it drains you of the love you once shared, your energy, time, physical, mental and financial resources. I try very hard to find something special to enjoy every day, and to be thankful for the life we’ve had, but, right now, it’s such a strange existence, made more strange and complicated by what’s going on in the outside world.