1. PalSal

    PalSal Registered User

    Hi all,
    I just start new posts instead of going on from the last time. I am not sure that is how it is done on TP. I have a number of things on my mind. And I like to put it out there to clear my head.
    We (my children & I)have been living with Early Onset Alz for many years now. My husband is described as atypical, meaning although he showed systems early (executive decisions and short term memory) he has had a very slow decline.
    That does not mean his condition has not hugely affected our lives and the lives of our children.
    First point (complaint/moan)
    When I was diagnosed with leukemia in March people said, If there is anything we can do to help. It has been a real rollercoaster. Last week I was told that I have another condition which is systemic lupus erythematosus, which is also autoimmune stuff & white blood cell related. I do not even care anymore. It is uncertain whether the condition existed before the leukemia or if it is a side effect of the drugs which is a possibility. Back to my point, it is very difficult to ask for help, but I have learned to do it some over the last 10 years. But going out there and asking for help and then being rejected is really difficult emotionally. I get help and support from a number of my close friends. And I am grateful for that, but I find there are many people people who are insincere and do not want to be called upon to assist. Which keeps me in my defensive position of not asking for help. In the end, I told a close friend and she helped me. But she helps me a lot. I have two or three friends who really take the actions of helping....I guess that is more than some people.
    Point 2
    My OH still goes with me to the occasional party or outing. (He will not go to the sinfonie or musical events any more) At these occasions people say to, "he seems perfectly normal to me. I had a very nice conversation with him" This should make me happy, but it does not. On the one hand, I am very happy that outsiders/acquaintances, his own family in England, think my husband is so "normal" and tell me so. But their comments invalidate what my family has endured and all we have lost. People do not understand as they are not living with this decline. This intelligent man who can no longer use his computer, his mobile phone, sits on the couch all day and communicates very little, except when with strangers. (He is still unwilling to go to any programs as they are in German and he would get little out of them) Today some sweet young missionaries from the Church of the Latter Day Saints are coming to take him for a walk as he has not gone alone for years, he would get lost and I cannot take him on long walks at the moment.
    Point 3
    Since the onset, my OH has had these feeling of deja vu. But it is more than that. He is convinced that he has been in that particular place before. I know how to handle this experience (which is just to go along with him as it no longer matters) For example, we will go to someone's apartment and he will tell me he moved them into the flat. Or we go to a hotel, to my knowledge where we have never stayed before and he says he has stayed there. This weekend we went to Romanshorn to Lake Constance (We had a lovely day out with my girlfriend) We went to the Badi at the lake and it was sunny and perfect. Swam and had a nice lunch. But he told her he had been there many times. (She is a close friend know has been with us through all this) she knows this is one the odd things he does. So we just let it go. But what is this deja vu stuff all about. Is it something pushing on part of his brain , is it a coping mechanism to feel comfortable. These false memories were one of the first things which happened with his Alz.

    I have not been a kind and loving carer each day of this journey, some days I am an acceptable carer. I have become a disgruntled & fairly bitter person, but I have stayed and done my duty, lived up to my marriage vows and provided for my family. But I have become more and more bitter. I do not care with the love which I read and see from many of you devoted carers on TP.

    That's it for me today. I am going to lunch with a friend while my OH is going for this walk. It should be good for all.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,550
    Female
    Scotland
    The core of your post is your disappointment and anxiety about the illness your husband is going through. Indeed that you are all going through. Your own health makes it harder for you to bear and to see anything positive. The fact that he can function in company should make it possible for you both to get out more and if the Church of the LDS are willing to step in then I would let them on a regular basis take him out.

    The illness is not going away, that's for sure. We all know those feelings of inadequacy and bitterness but they are sterile. We can't change the illness so we have to look for ways to change how we live with it. I'm still working my way through these issues so have no magic formula but you are clearly intelligent and I send you my good wishes that you will cope.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,656
    Kent
    Well PalSal, what a lot you have on your plate. One partner with a serious illness is bad but both with serious illnesses would challenge the most ideal partnership.

    I have no idea how you must be feeling but it does sound as if your spirit is as low as it could be. I`m so sorry. I wish I could offer something more than sympathy.
     
  4. mrs mcgonnagal

    mrs mcgonnagal Registered User

    May 9, 2015
    153
    Dear palsal,
    Thank you for writing your post, I really can identify with a lot that you say. I just wanted to send you best wishes.
     
  5. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    I couldn't just read your post and not comment. It's a hard road you're having to walk at the moment. Lots of us have been disappointed by the lack of support from people we thought we could rely on.

    But equally, support often does come from unexpected sources. I do hope you get all the help you can, and I wish you and your family well. xxx
     
  6. Lilac Blossom

    Lilac Blossom Registered User

    Oct 6, 2014
    499
    Scotland
    In my experience, when people say "If there's anything I can do to help ..........." this is often meaningless. I can only think that they feel good about saying it, especially if someone else hears them saying it. However, I have also found help sometime comes from unexpected sources.

    It's great that you have some good friends who have not let you down. I would also accept the help of the Church of Jesus Christ of Latter Day Saints. Their kind offer of help could make a world of difference to you and your husband.

    I hope that you are enabled to enjoy better health - are you on medication/treatment for leukaemia? My hubby was diagnosed leukaemia (CLL) 16 years ago - it has been dormant for the past few years.

    Best wishes xx
     
  7. Caz60

    Caz60 Registered User

    Jul 24, 2014
    251
    Lancashire
    I'm sorry that you are feeling as you do I don't suppose any of us knew we would be caring in this way ,it's a proper "head doer" isn't it .I feel as you do a long term back problem and survivor of Breast cancer and now confined to caring for my husband of 47 years,I am also angry, bitter ,moody but also loving and compassionate.Every day is different just more of the same but,you have to keep going and at some point myself also will have to branch off in a different direction.Lets hope we get the chance to be proud of what we are doing in our caring ways ,tears and all .Warm hugs xx
     
  8. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    So sorry to read your post PalSal. You are really suffering at the moment. Please accept as much help as you can. Can you perhaps ask your GP for some temporary antidepressants to help you or is that not possible with your medical condition?
     
  9. PalSal

    PalSal Registered User

    Always a big thanks to everyone for your honest and supportive words

    Dear TP friends,
    Today was much better. Two lovely friends of my husband's came and took him for a walk. Two free days in a row!! He was happy and I had some alone time. It was great.

    Many thanks for all of you who read my moan and I feel better just writing down whats going on for me. (And getting a bit of sympathy from people who understand the issues.)
    Your input and suggestions are much appreciated TP friends,
    Sleep well.
    PalSal
     
  10. PalSal

    PalSal Registered User

    The long process-to relief.

    Dear Talking Point Pals,
    Its been a long time since I have posted here.
    My leukemia has been in remission for six months, and I am well again.

    As you may remember, I had great frustration in getting help for practical things here in Switzerland. And as my husband is English (I am American) My OH never really spoke German. so the day programs here were not for him. And I have been struggling for over 13 years with the situation-often considering whether to return to the UK.

    But the God of my understanding works in mysterious ways. Because I was in the onology unit of the hospital, there were many services offered to me. I was offered counseling....I went to the counselor and said " Hey, I do not have a problem with living or dying with cancer, but I have a real problem living with Alzheimer's" I told her I was struggling with getting help and support. She was incredulous and was sure there was support. Then she came back to me and said ....she could not believe it but she could find none. (It is interesting to see the difference in the facilities for onocology and for Alzheimers at the hospital. The Alzheimer's and memory clinic are in the oldest most tired building on the uni campus whereas onocology and pediatrics are the newest. The Alz facilities are clean functional but depressing in comparision)

    In the end, the Alz clinic was somewhat shamed and they connected me to a social worker who is now working with me. Kathrin had worked for 7 years for the Alz Association here in Basel, but there were no longer funds to pay her and she was no longer working with them and she took me as a special case. Firstly, she found two wonderful retired Swiss men who come and walk with my husband each week. One is a retired doctor and one a retired manager from a Swiss engineering company. Both highly educated and who speak perfect English. All the expatriates in his walking group who when he was still able to get around have disappeared---none wanted to commit coming and walking with him weekly. (I still hear my resentment towards these people, I want to let go of that now)

    Kathrin also got me the paperwork to apply for some extra funds. These funds are non income/capital dependent, but very hidden and you must know where to look to find them. (My daughter is a doctor here and my son in law a Swiss lawyer-neither was aware of these funds)Kathrin had the local government send a Social Worker to evaluate our situation. I had been going to the local government for years with no joy. My two children came for the evaluation.(My husband had a particularly bad day while the Social worker was with us--so she witnessed his behaviors and also knows about Alzheimers) I was given back payment for 2 years (they did not go back to the beginning 13 years but 2 years was a large sum!) And now I have an additional small supplentmentary income every month.

    In addition, it seems there is a program to help carers (no one had told me about this) The goal is to keep the patient in the home as long as possible by helping carers. I can now get up to 1,800 CHF per month for services in the home. I must set myself up as an employer and pay the AHV for the workers who cannot be from a company but must be unemployed persons or persons working for extra money. I now have a gardener to help me and a cleaner once every two weeks. I am working with a young man who was a male nurse in Eritrea, who I am hoping will be a long term helper once my husband gets used to him. He has been once just to take my OH for a long walk, he is a lovely young man. (a few years back my husband would probably not have gone on a walk with someone he doesnt know but now I just act like we know the persons and off he goes) So, my walking obligations is lessened to two or three times per week.

    All in all, it really helps to have all this support. I am really happy to have it as now things seems to have picked up in the progression of his illness. He is at 15 on the scale now, so still moderate, but it has been a long haul. But he has seen two of the four children married and the birth of three grandchildren (plus the joy of a local grandchild)

    Nights are becoming more difficult (we have visitors from his imagination in the room more often than before) He is more volatile if I lose it, things escalate. But now that I have all this support, I am holding up better.

    It is still a lonely life. The kids are busy with their lives and we have lots of interaction with the two children here in Switzerland, but of course, not daily.

    I do feel quite sorry for myself in that I lost my 50s to my OH's disease. (I was 48 and my husband 49 when he was diagnosed). I miss my "real, capable, intelligent husband". This dependent person I live with is not him.....but I am trying to honor my marriage vows but it often leaves me feeling quite sorry for myself. I feel I do it all with very little love for him, it is out of obligation and commitment to honor my promises. I wish I could feel lovingly, but I do not. I am very grateful for the help I am now receiving.

    I wonder how others feel, I mostly read about people on Talking Point who are so devoted and loving towards their OHs. Selfless individuals of great love and perserverance. I am mostly just going through the motions, giving the meds, feeding, reminding him to change his clothes and taking care of him day to day. That is it. Little joy-very little laughter, and very little fun except when our granddaughter is with us.

    Just getting by one day at a time---being grateful for the fleeting moments of joy that are given most days at least once. A beautiful bird or flower, the young foxes in the field above the house, the fresh smell of ironing clean clothes, baking a fresh cherry pie, music.....my childrens visits.
     
  11. Lawson58

    Lawson58 Registered User

    Hi Palsal,

    It was so nice to hear that you feeling better and that you are finding some positive things in your life. It is wonderful that you have found some meaningful support.

    But you needn't feel for a moment that you are the only one who cares out of a sense of duty and commitment. There are many on TP who care with great love and I admire them greatly but I am not one of them.

    My OH showed signs of AD for some years before we managed to get a diagnosis for him and I struggled to cope with his constant paranoia and odd behaviour. Our relationship disintegrated over the years and we reached the stage of discussing separation. Financially it did not make sense and I knew that he would struggle to survive so we took the decision to stick it out.

    Almost three years ago OH had a cardiac arrest at home and I administered CPR and saved his life and then a few months later he was diagnosed with AD. I am now a wife but not really a wife and a reluctant carer. I sometimes feel resentful and angry and get frustrated that my life is governed by my OH's needs. My GP talked me into getting some counseling and that is helping me a lot. Just having the luxury of being able to get things off my chest and learning how to forgive myself for my feelings has been a very worthwhile experience.

    I do hope that you stay healthy and that you continue to find some joy in your life.
     
  12. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    I remembered your original post, and I was glad to hear from you, and delighted that you are getting both practical, and financial support. Unfortunately, here in the UK, not only is it a postcode lottery, but you have to know the right questions to ask, to be able to get anything.

    I can empathise with you completely about invisible visitors, and you appear to be dealing with their presence admirably, by going with the flow. But please believe me, regarding your frustrations and feelings, we aren't all Mother Theresa, every waking minute of the day either - I certainly wasn't!

    Many was the time I gritted my teeth, and bitterly resented the hand of cards I'd been dealt, and it's difficult to keep a smile nailed on your face, 24/7, when you're faced with double incontinence, physical and mental violence, and blank looks when you try to make any sort of conversation.

    I had a long journey too, though not as long as yours, and John was much older than your husband, 64 when first diagnosed and 76 when he died, but I am nearly 9 years younger, so I know exactly what you mean about losing your 50s to this hateful disease. It is heart breaking when you see a once-highly intelligent person struggling to work out what a knife and fork are for, and it must be so much harder for you, when you're not in the strongest of health yourself.

    He died the Christmas before last, and though I've found things to fill my time, I feel bitterly jealous of people who have lovely retirements, and have never had the Devil, that is Alzheimer's, invading their lives.

    I'm so glad you're in remission now, and hopefully you'll regain all your strength and it must be lovely to have your darling little grand-daughter visit you. Please keep posting, and I'm sending a huge cyber hug, together with a bouquet - and chocolate. :)
     
  13. PalSal

    PalSal Registered User

    Thank you Scarlett

    Thank you Scarlett for taking the time to respond to me. I do not write with often.....but I do come to the site to read with regularity. I am grateful for others who understand. It means a lot to me just knowing there are folks walking this walk, who are imperfect and honest.
    I hope you are enjoying your life again.....I am sure it is hard as you had hoped that you would have a partner in retirement. But just the same I hope there is some pleasure in your life.
     
  14. PalSal

    PalSal Registered User

    Thanks for response Lawson 58.

    Dear Lawson58,
    As my OH has a do not resisitate, I will definitely honor that. Earlier this year he did all of the medical directives with a friend who is a gereatrics physician whom he trusts.

    Thanks for all your honesty, unfortunately I do not have a lot of counseling on offer here. But as I said this SW is super and suppportive *and I believe non judgmental) I work to improve my attitude each day but it is exactly that one day at a time.
    Thanks for sharing.

    Cheers,
    PalSal
     
  15. teetoe

    teetoe Registered User

    Mar 10, 2016
    78
    NSW, Australia
    Hi PalSal, I am much newer here but read your posts from the start of this thread, and am so happy that things are somewhat better and you are well yourself. So many of your OH's symptoms match those of mine, although mine is 72, and now I wonder if mine has atypical Alzheimers rather than FTD as diagnosed. Yes there are times when it is so hard and lonely. I wish I had found this forum earlier when I was really struggling with OH's behaviour symptoms. Still now I feel an understanding coming through from everyone and it is so much of a relief to know that I am not going mad (I hope), that the problem is not our marriage is on the rocks, (as I firmly believed) and much as I don't wish this on anyone, that others have similar feelings.

    Keep posting, your story is uplifting, and I am so thrilled to hear about the marriages, arrival of grand children, and relief for you in support and finances.
     

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