Staying in Touch with TP

Discussion in 'I have a partner with dementia' started by PalSal, Oct 13, 2019.

  1. PalSal

    PalSal Registered User

    Hello TP Friends,
    It is a lovely autumn here in Switzerland. As usual we had a big walk yesterday (no longer our beloved mountain trials) but lovely level walking paths in the foothills none the less.
    As the disease continues, I make my decisions by the day, month and year. (we are in year 17 of living with Alzheimer*s) and the changes to our life together.

    I think I am different from many members of TP as I was only 48 when we started this path, I was still 100% employed, mother of children ranging from 11 to 23 at the time of diagnosis and I saw that my survival meant I must continue to live my life.

    This year I have seen more changes, 3 days a week in the space on one year in the daycare, starting with one day and quickly moving to two now on to three days. Its all a process.

    Tough decisions lately, making the decision that he is not going to join in on Thanksgiving at our friends, where we have celebrated the last 25 years. With bathroom problems and accidents, I am just too much on the edge to bring him along this year, last year was disastrous. At first, I was not going to go alone (I go alone much of the time and it does not bother me much) But Thanksgiving is a family event, and it seems disloyal to go without him. But I want to see our friends and all their growing families, and of course my children and grandchildren will be there. Sadly, it is another loss and another bit of life to seems it never stops.

    Today and tomorrow I am seeing a very old friend from my youth. I have not seen him for many many years. Today he and his partner are coming to my city and I will meet them for the day. And tomorrow I will go to visit him in the city where they are staying while his partner is lecturing at the university.

    I weighed and debated with myself as to whether I would take Nick for the day to meet my old friend. . I decided after much contemplation that I did not wish to have my old friend meet Nick for the first time in his present condition. My Nick, was such a brilliant and interesting man, this poor man I live with is not that man. I understand that it is through no cause of his own. I am not ashamed, I just do not want to focus the day on caring for Nick. So, I have a man sitter for the day. She will take him walking and get him out, so it is not that he will be alone or without activity. But all his activities must be initiated and directed by others. It is difficult for me to focus on anyone else when Nick is around. He requires my attention. So, I will go it alone...........and no matter how much support I get from others....I am still sad and somewhat guilty when I put my needs above his.
  2. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    Basingstoke, Hampshire
    You're doing the right thing. Make it your day for a change, he's going to be looked after so no need to feel guilty.
  3. AliceA

    AliceA Registered User

    May 27, 2016
    Fulfilling your needs will help you to fulfill his. Alas so often it is not possible, but while it is think of it as money in the care bank. Enjoy your day with your friend.
  4. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    East of England
    Your story touches me deeply @PalSal and your fortitude over 17 years is remarkable. I suppose it is a bit like a life where we have to constantly make adjustments, only in your case not for the right reasons but for the reasons of increasing disabilities with the disease. Perhaps guilt is something we feel about any actions in life that we may find uncomfortable and nothing to do with dementia. One has to live with that and do what seems right, in your case to visit old friends without your husband. My husband and I often did this in our previous lives and it gave rise to varying degrees of guilt and upset because then, of course, we were both of sound mind and have had a very happy marriage. That’s the nub of the disease, that one partner is no longer of sound mind and the other partner has to make judgments and decisions for both. I find that quite a burden at times and at other times I am certain. Enjoy the visit and dump the guilt, it can manage on its own for a while.
  5. PalSal

    PalSal Registered User

    As always, I appreciate your comments TP friends. It was a good two day visit with my friend. A big catch up on each others lives. And we had lovely weather. It was the right decision to leave Nick at home.
  6. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    Don’t feel guilty, we have all lost part of our lives, thankfully in my case only five years and OH is now 86 but I still think of what we were able to do when he was 84 (my age).
  7. dancer12

    dancer12 Registered User

    Jan 9, 2017
    Hi PalSal:

    You are so strong, I hope I can be only a quarter as strong as you are. NEVER EVER feel guilty for putting your needs above his. I understand how difficult it is. How guilty would you feel if you lost Nick in a car crash instead of dementia, which appears to be much, much worse You have dealt with this for so long and you have done a wonderful job in both taking care of his needs as well as your own. Don't start feeling Guilty now. There is no reason to. :):):)
  8. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    Don't feel guilty, you would have spent time apart in 'the life before'; absence makes the heart grow fonder and I'm sure you both return to each other refreshed from spending time with others.

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