My son has severely declined, he can’t speak he can hardly swallow, he leans to one side and just stares, I’m so sad all the time and I’m afraid of the worst phone call I might get one day, what can I do?
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I don’t know what to say. It feels like the hardest situation to be in.
My mum is in a slightly similar situation: I moved her into a care home at the start of December because she has Alzheimer’s and she was not safe or managing her affairs at home. She has gone downhill even more since moving into the home, to the extent that, for example, she doesn’t recognise her own reflection in the mirror and refused to go into the bathroom to wash or change because “there are people in there!”. We’ve now covered up the mirror.
So while she is safer than she was, she is not better and she’s not going to get better.
I’m spending time with her. I currently see her about three times a week and try to find things we can do together or just chat. I took some painting resources in for mum a few weeks ago, with a view to getting her to copy-paint a picture of some flowers in a vase but her comprehension of what it is all about was practically nil. “Put some yellow here mum.” And she’d just go anywhere with it. It’s very difficult. Unsurprisingly, she gets down about it all from time to time. When I saw her on Friday this week, she felt her “life overall had been a bit of a disaster” but in reality, it is only her current state that is something of a disaster. So I encouraged her that when she was well, she had worked hard, had got herself promoted as far as any ordinary person might where she worked, even being invited to Buckingham Palace for a garden party, but she is forgetting all of these things.
For my mum, I have to stay calm, I have to simply repeat the same encouragements one after the other and then back to the beginning. I can take her out to some places – we are able to get out for a short walk or for a cup of coffee or when we’re feeling flush to go out for lunch – and she enjoys these things: it’s clear that that is true: and what else can I do but try to find things that we can do, that she might get something out of. She will surely get to the stage when she can’t get into the car, so we will be limited on what we can do. And she already can forget that we’ve even been out or done something as soon as she blinks.
It is hard. If it was my son in that situation, I don’t know! It would be ten times harder as a father.
Tell him you love him. Spend some time with him and try to find some things you can share. Even if he doesn’t fully get it or if he were like my mum and doesn’t remember it for very long, I still think there is value that you’re giving him by taking part and I hope you see that value for yourself. This is what I’m doing, anyway, with my mum.
I guess the other thing I do is to provoke the care home to look after her well: show them how to influence mum when she generally refuses everything, check on her room and make sure she has clean clothes, towels, that her TV remote hasn’t gone for a walk somewhere round the home. These are the things that are pertinent to my mum.
And somehow we have to be careful of ourselves, of our wife, of the rest of the family, that we don’t forget them.
You’re doing one of the hardest things.
All my love,
Richard
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Sorry to hear state of his son And your Mom @Richard And my best wishes And prayers for them.
Here i like to share my own experience of spinal DAVF / and after surgery Paraplagia what went on over last 3 plus years.
Apart of my Telecom profession I use to be a Tennis crazy fellow And good sportsman who played regular tennis for almost 22 years till suddenly I went thru Spinal Trauma .
Off And On after surgery many repeatedly I wish to End life myself but thats the most difficult thought to materialize .
Coz only God / Allah hold the power to give Birth or Life And Death both while In between life And death Man holds the power how to spend in general terms.
So lets leave the job of birth / death onto God.
Regards
Syed
I am really sorry to hear of your son’s decline, it is heart breaking. When I was just home from the hospital after my bleed I was really quite down. I looked at my wife, my son and my daughter and realized I was damn lucky it was me experiencing this. I can’t imagine had it been one of them. You have are in an incredibly difficult position, but so important.
We hear so many stories of people in comas who recall hearing people talking to them, and memories of those visiting despite not being able to respond in any way. I truly believe the love and support is felt, albeit in different ways. By being there for him, you are making a difference. As Richard says, you have to care for yourself as well. If we don’t take steps to ensure our health and well being, we are not able to care for and support others.
I am certainly no expert, but I think talking is so important, and seeking professional assistance in how to manage strong emotions is important. I sought some help a few years back when my normal processes were not as effective as they once were. It was another tool for me, and was great help. I sought a psychologist who was well versed in PTSD and related matters, it was invaluable in helping me process what was showing up in my mind.
Something worth considering if you haven’t already. My go to coping used to be exercise, worked well, had to add the psychologist in a tough time. Now I still exercise and do a check in every 6 months or so. The resource is always there if I need in a tough moment. Take Care, and know I am thinking of you, and your son, John .
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I’m so sorry about your son. I have an AVM and my mom has expressed fears; when I text her about my headaches she breaks down in tears. There isn’t anything that you can do that you aren’t doing right now by being his parent and loving him. I wish the best for you and your family.
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I’m so sorry to hear about your son. I can’t imagine how hard and scary this must be for you. Recovery from AVM can be really slow and painful, and sometimes it feels like things will never get better. But please don’t lose hope. I truly believe that you and your son can get through this.
I’m an AVM patient myself, so I understand how difficult the journey can be. One of the hardest parts is the waiting, lying in a hospital bed, going through different treatments, meeting new doctors for surgeries, transferring to different hospitals for rehab, and trying to find the right treatment over the years. It’s exhausting and painful, both physically and emotionally.
Right now might feel like the darkest and most difficult time, but please hang in there and try to stay hopeful. The light will come as long as you keep believing. When you try to think positively, tomorrow can always be a better day.
I had my AVM and had two surgeries while I was still in high school. After that, I had to relearn so many basic things like how to talk, write, walk, eat, and just be normal again while everyone else around me was focused on school and getting ready for college. It wasn’t easy at all.
Even now, after the surgeries, my speech still isn’t as fluent as before, and my left hand doesn’t always work the way I want it to. But life still goes on, and I’ve learned that even when things aren’t perfect, you can still move forward.
Please don’t give up. Things might not turn out exactly the way you hope, but if you stay strong and keep going, you will find your way to happiness again. On the hard days, it’s okay to cry. Just don’t lose hope. Keep believing, keep praying, and trust that the light will eventually guide you through this.
You and your son are stronger than you think. Emily.
My son never had surgery , it was too late but the time we new what he had , I never knew he was born AVM and it raptured it did some damage but in 2019 he had a massive bleed and ended up being restricted to a wheelchair, last year and this year he had aspirated pneumonia and last year just before the new year he started to decline, he can hardly talk all his strength in his body his gone, he has no life what so ever and will never get better, it’s been vey hard the last few months 
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I’m really sorry to hear about what your son is going through. That must be incredibly hard for you and your family. No parent should have to see their child suffer like that.
AVM can be such a difficult and unpredictable condition, and it’s heartbreaking that things happened before there was a chance for surgery. It sounds like your son has gone through so much these past few years.
Even though things are very hard right now, I hope you know that your love and support mean a lot to him. Just being there for him and caring for him every day is something very powerful.
I’m sending my thoughts and prayers to you and your son. I really hope he can find some comfort and peace, and that you can find strength during this difficult time. You’re not alone. 
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Thank you 
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