How am I supposed to feel about a father with advanced Alzheimer’s?

For the first time since the pandemic started I was free to go and see some of my relatives this week. I had a great time, driving around the UK and visiting my sister, one of my brothers & his wife, my mum and one of my aunts. I am feeling a little guilty about others I did not see, but it was still a really good week. I also managed to get a number of “jobs” done including sorting out my mum’s loft, helping her buy a car, and getting my aunt to sign sixty sheets of paper for her powers of attorney. In many ways I feel very satisfied. But one visit has left me sad. For the first time in two years, I was allowed to see my dad face to face in the nursing home where he lives and is looked after. He has advanced Alzheimer’s.

Let me tell you about my dad. He was a Cambridge graduate in the Classics, who then went on to study Theology and became a vicar in the Church of England. He led churches in Derby, Salisbury, Matlock, Frimley and Guildford. He was involved in amateur dramatics. He collected old newspapers. He became fascinated by the Lutheran church in Germany and learnt German so that he could visit and find out more. He was introverted but pushed himself out of his comfort zone to stand up in a pulpit every Sunday. I love and admire my dad.

He started getting confused about eight years ago, and he deteriorated relatively quickly, By four years ago he was in a home, and when I saw him last time, he did not know who anyone was and was fully reliant on care. But there was still something there – just a spark in his eyes when he listened to music, or looked through pictures in a book. He had to be hoisted and he spent the days with others in the lounge, and in his room at night. Just occasionally when I spoke to him, there was the glimpse of a smile and I could imagine some kind of connection.

When I saw my dad this week that spark had gone. He is now in his room the whole time. He seems to be just a shell.

Of course I realise that no-one knows what is going on in my dad’s head. Perhaps there is still something there. And I am glad that I went to see him. But I feel such a sense of loss. He is gone but he is alive. I can’t say goodbye but nor can I connect. I just feel sad. And I feel guilty for feeling sad while he is alive.

Have you had a similar experience? How did you manage how you felt?

2 thoughts on “How am I supposed to feel about a father with advanced Alzheimer’s?

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  1. My dad had Alzheimer’s. He had it for a good 8 years; he passed away in 1993. I visited him regularly, about once a week. He was nonverbal for many years. I went because that’s what I wanted to do. I don’t know if it made a difference to him, but I believe it did. Just on faith. Back then, I was raising young children. I took them with me. They cheered up the place, and I believe the lesson of respecting the elderly wasn’t lost on them.

    When he died, I was surprised as my mind jumped back 8 plus years to how he was before the disease took him away. I remember things I hadn’t thought of in a long time. It is a very sad disease.

    My mom is still alive. She lives in assisted living and will be 99 on 12/31. We could not visit for four months in 2020 (covid), and during that time she degraded significantly. She no longer walks (even with a walker) and has dementia, but not Alzheimer’s. Every once in a while, she will have a lucid day, sometimes talking even more than she used to.

    Many times when we visit, she’ll repeat phrases – sometimes almost constantly. She’ll say, “Dying would be easier.” “I’ll take a salad.” “Hi John. Good to see you, sad to see you go.” (John’s my brother.) It breaks my heart when I look at her. Still, I visit twice a week, doing all I can for her. I want to know that I did all I could for my mom whom I love so much. I enjoy those lucid days when they come.

    I’m sorry about your dad. I guess we take it a day at a time and do the best we can. I also pray every day that my mom will be safe, not in pain and feel the love of family. Take care.

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