1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. PalSal

    PalSal Registered User

    On Sunday, we did a major trek in the Jura. We made it all right in the end. I managed to coax Nicky on tricky bits of the saddleback ridge, I felt very sorry for him, as there was really no turning back...and this would have been nothing for him 2 years ago. We were planning to do 17 k, but ended up doing about 20 K as I got us lost for a brief period of time which he was also very anxious about. (besides it being hot and hard work) Having promised myself I would not repeat our experience in the mountains last autumn, I failed to remember that Nick is now fearful and having perception problems which affect his balance. Rough climbs are really beyond him now, and I find I am having trouble accepting that. Or fI just choose to forget it. My fearless intrepid adventurer is gone, my hero, my guide and adventure buddy.
    It is hard to accept as I still like an adventure...but clearly I must heed to the inevitable confinement of clearly defined paths. But they can be beautiful, too.
    My friend, Jean is in the picture with Nick. We were deep in a lovely forest in this part of the journey, lots of moss covered stones and wood. We passed thru unbelievable alpine meadows in full bloom, thousands maybe millions of flowers...have no way of knowing all the different kinds...so beautiful.
    Friday night I went to my dear friend's birthday , She invited a bunch of gals to all to a modern ballet, very interesting. Here are three good old friends toasting her farewell to the her 50s ( we are drinking sparkling apple juice) I am on the right. I am so grateful for all my wonderful friends and that I can still go out and enjoy life.
    On Sunday, I will go to a picnic concert of the Sinfonieorchester Basel, I am not sure whether I will take Nick or not as he does not enjoy music or crowds--and there will be a lot of people. I will report back and let you all know. I just got my season tickets in the mail this week for the next concert season 2019/2020. I am excited by the program and there will be eight concerts over the season.
    Staying in my community of friends and keeping up my interests becomes more and more difficult, but I am determined to do it. So far it still works. I could not do it without all the carers who are here supporting me, so I can get out of the house alone and live my life.

    Attached Files:

  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    that's impressive @PalSal a 20k trek is quite an adventure in my book
    I hope the concert season lives up to your hopes and gives you much pleasure
  3. AliceA

    AliceA Registered User

    May 27, 2016
    Lovely photos, Palsal.
    We used to love walking and our night walks in Sweden. For me they are just memories. Take care, your husband looks a lovely man.
  4. PalSal

    PalSal Registered User

    Yes 17 years we have lived with this disease and we are still managing to get out there into nature a few times every week. I am amazed at length of our journey. I expected Nick to die after about 10years, as that is what we were told normally happens in such cases of early on set. But clearly that is not our path. He just gets up everyday able to do less and less, doesn't really remember the children now....but will occasionally ask about one of them , his two in Norway are completely off the radar. Waits for me to direct his life- make his coffee, help him to shave and dress, he follows me around like a big dog, where and whatever I am doing.
  5. Justmary

    Justmary Registered User

    Jul 12, 2018
    West Midlands
    PalSal I am full of admiration for you and the way you have coped all these years. And I'm glad that you are also looking after yourself. All the best. You deserve it. Mx
  6. PalSal

    PalSal Registered User

    #6 PalSal, Jun 20, 2019
    Last edited: Jun 20, 2019
    @Justmary Thanks Mary, it gets harder and harder, but we are blessed that he still walks at all after all this time. I suppose eventually he may no longer go for walks but it is hard to imagine that for him. He had such a big big life, and now it is so reduced. But he is content most of the time.

    My leukemia doctor wanted to send me too a spa for recuperation. We discussed it and she was trying to make arrangements for me to go together with Nick. So, she contacted Nick's neuropsychiatrist, whom I trust and like very much. He said he could write a prescription for Nick to go into care for a couple of weeks, but he feels that at this point in Nick's stage if he went away into care for a couple of weeks he would never come home again. As he is so reliant on me and his connection to his world is via me. He is of the opinion that if I were to go away it is best that Nick stay in our home. That way he is still connected for now. I trust his opinion and feel he is right. So, I will not go away and keep going on. So, I am going to just try and do fun things to lift my spirits...take myself to the local spa for a few hours each week and get a massage here and there for my self care.

    Also, just read a post from a woman who was discussing the fact that her husband would not talk to a stranger in the house who was sent to "chat" with him.
    I got very good advice from an Alzheimer's physician about introducing the concept of helpers early in the Alzheimers progression....first a gardener and house help, then a walker , then a lovely "mansitter". My hubby resisted in the beginning, but eventually it was the norm. People come and go from our house, I have a team of carers and helpers. We are 65 and 66 respectfully, so I have been having help for about 6 years now. I realize it is different for you at 84 and 90.

    But we need to advise those with early on set of the importance of early intervention of assistance so it is the norm when life gets really difficult.

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