Alzheimer's disease

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My husband was diagnosed with Alzheimer's in 1996. I fought the Lincolnshire NHS for medication and won after 3 days. When the first medication didn't work after 3 years I again challenged the Dr to give my husband the new medication. Galatamine worked wonders. In 2016 I had to allow my husband to be admitted to a nursing home in the EMI unit. Now nothing can help him, he is in the final stage of the dreadful disease. It is heartbreaking to see him but I visit every second day even though it's a 60 mile round trip, at 70 I'm finding the journey tiring. My love for him has not dimmed. Looking after him for so long affected my health badly. I would advise anyone with a loved one with this dreadful disease to put their loved one in a nursing home before they became incapacitated then you could enjoy outings with your loved one with a carer or relative, You could get your energy back and see friends. I didn't do that but now wish I had. Now I am having difficulty going forward after all my attention was only on my husband. Sometimes he knows me other times he doesn't. It's a heart wrenching slow death for the sufferer and a heartbreaking time for the relatives.

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  • Posted

    Loretta, I do agree with you and offer you also my sincere sympathy in this awful situation.

    Please let us know how you are getting on. You have done your very best for your husband and made some very hard decisions. Now you are exhausted with all the travelling.

    Would it make you feel very guilty if you visited less often? Honestly, would your husband notice?

    Yes, this is a truly heartbreaking time for relatives.

    Sent with love.

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    • Posted

      Hello Mac, yes, I did try to go less often, actually at one time my husband had a kidney infection and was very ill. I drove to the home every day, I was with him from 10am to 9pm when exhausted I drove home. Then I had an angina attack, I simply asked a family friend to drive me to the home. Still pushing myself I ended up with a mini stroke. My Dr was quite cross when I refused to go to hospital. I cut my visits down to once a week. I did feel very guilty not to go and see him so often. Now a year down the line I don't feel so guilty if I can't go to see my husband, if I am tired or in pain from my back I have learnt to rest.

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    • Posted

      Loretta, that is good to read; I mean that you are looking after yourself much more.

      You will always feel guilty, but it truly is a waste of guilt. The terrible sadness about this is that your husband has no idea what you are  suffering any more. You alone have the medical problems - you no longer have him to aid and support you. That is devastating. You have given and given and given, and I am sure you gave so much because of love.

      People with dementia just do not have the ability or cognition to see what is happening to their spouse/daughter/son. That is the nature of dementia. Dementia isn't just forgetfulness. It is progressive failure of the brain, as you know.

      I hope you stay with the Forum for support.

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    • Posted

      Mac you understand because like me you have been to the darkest of places.

      Yes, I gave all I had to give until I became critically ill. Apart from the pain in my lower back and left leg I'm fine. I understand what you say about my husband not having the ability to know my suffering or the cognitive ability to understand.

      Having said that until he became so ill I took him caravanning from the Highlands to the tip of Cornwall. I believed in Adventure with Dementia, I knew the last time I took him to Lincolnshire it would be the very last time. I have wonderful memories of 20 years of adventure.

      I am a giver and when I gave him my heart it would be forever.

      Now sometimes I miss him so much it hurts, I'm sure you understand that

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    • Posted

      Oh yes, I understand that feeling of missing your husband very well. You have clearly had a long, good marriage.

      I have thought for a long time that dementia is harder to bear for the person nearest to the person with dementia. I wish there was more understanding of this in the public domain.

      I am sure that when your husband had to be admitted to an EMI unit you were devastated. I am equally sure that you never suspected that the end of the dementia process would force this decision on to you. Probably your husband has some aggression issues, which are very common in dementia, although this is not generally known by the general public.

      Well done to you for loving him throughout the disease. I am pretty sure that there would have been times when you felt that your response to him was poor or misjudged. You will be thinking of these times too, which adds to the guilt.

      You are not alone in this either. I personally can still remember some of my own awful responses to some very challenging situations and they play on my mind. Believe me, it isn't worth it, Loretta. Concentrate instead on the excellent care you gave your husband 99% of the time.

      If I am wrong about this, do forgive me. It is a dark area and not talked about enough. Maybe I need some forgiveness?

      Mac.

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    • Posted

      Don't judge yourself Mac, like me you did your best, you can't do more than your best. Yes, I'm sure like me you raised your voice at times but that is all I ever did. I cared 24/7 for my husband, towards the end when only having had 3 or 4 hours sleep in the morning I'd say to myself 'here starts another day'. I would not admit I was exhausted, I had to go on, I had to be strong and loving all the time.

      After he was admitted to EMI I felt I'd lost him, I'd betrayed him it was a terrible time, my thoughts turned to suicide. I saw a lovely lady Dr who understood how I felt. She also knew the toll it had taken on me. I had entered a world of depression. Now on the right medication I'm smiling again and don't feel down at all. I've accepted I can no longer groom my 5 Poodles and let them go to a groomer. I can enjoy my poodles now, give them my time. There are many positive things that have come about from my husband being in a Nursing home. I did my best, so called friends pointed fingers at me because I allowed my husband to be put in a nursing home. They didn't matter, they did not offer any help. Other people did not understand why I took him to resteraunts and cruel things were said, I'm a fiery person and would shoot back making them look like the idiots they were.

      Now I'm resting and doing my own thing like you are

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    • Posted

      Hi loretta89480

      We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

      If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

      Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

      If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

      Kindest regards

      Patient

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    • Posted

      That was 3 months ago, I now want to live for my husband (even though he doesn't know it) and my friends and pets. I did actually try to kill myself 3 times. I was taken to a wonderful 'real' Dr who immediately saw I was suffering from severe depression. I was given an anti-depressant that helped me greatly. For the first two weeks after starting the medication I slept a great deal. Now I'm full of life again.

      Thank you for being so kind, I'm safe from harm now.

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    • Posted

      Even if you thoughts did turn to self-harm, I do not believe that you would have done anything.

      You must have been mentally and physically exhausted. It's good that you saw your doctor and got treatment.

      Don't pay any attention at all to people who point fingers. They haven't been where you have.

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    • Posted

      Well, the doc gave me morphine patches, 25mgs every hour, he warned me about falls (not done that yet) and feeling sleepy, sleepy? I've been flat out since breakfast, but the pain is greatly reduced. I can't drive until my brain gets used to the morphine. I phoned the home and my husband is OK today.

      Is Alzheimer's genetic? If not why do so many people of all ages develop Alzheimer's? The plaques that attack the brain must have either a flu like virus to activate the plaques. Why are so many highly intelligent people affected? While people with average intelligence are mainly free of the disease. My husband when diagnosed the psychiatrist said my husband was highly intelligent and it would take a long time for the plaques to destroy his brain. I hoped he would never succumb to the disease, perhaps that was my positive way of looking after him. I didn't realise I was doing everything 24/7 until I collapsed. The drs and Social worker took the decision to remove my husband. Looking back now they were right. I naively thought I could carry on. There comes a time when the carer has to give way. When inside the box a person cannot see what is really happening.

      I am a very positive person, when I received a piano cover I asked "so where is the piano". The electronic piano arrived on my birthday a gift from my son in China.

      Sorry this is so long Mac Loretta

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  • Posted

    I play the piano, too.

    I have seen people of all levels of intelligence succumb to dementia.

    There is some evidence that some of the dementias may be inherited. Certainly, if you ask someone about their parents' or grandparents' causes of death, they generally mention dementia as part of the mix.

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