My husband was diagnosed with dementia a few weeks ago. I just can't seem to get my head around it. We knew something was wrong, but to get an actual diagnosis from a GP was like being hit with a sledge hammer. He's obviously in the early stages - his memory is poor, some behaviours are bizarre- and he has no concept at all about what is happening to him. For that I am so grateful. I try to just concentrate on the day to day, but I worry so much about the future. I'm tiny and my husband is 6ft and very strong. I worry how I will cope if he becomes difficult. I veer between frustration or being cross at his actions, and an overwhelming sadness for him.
Coming to terms with diagnosis
- Thread starter Emilypen
- Start date
Welcome and you will find so much support here. I am sorry about this diagnosis and completely understand from personal experience how you feel.
Get things like power of attorney in place. See if you have any local support services. And then you are doing such the right thing in concentrating on the day. My husband and I actually had a very happy couple of years after diagnosis, we spent so much loving time together before his eventual deterioration. Happiness is still possible for you.
Warmest Geraldine aka Kindredx
Hello @Emilypen Welcome.
I know it`s not the best place to be but it certainly will be the best place to be for support and information.
The Alzheimer`s Society have published a guide to living well after diagnosis. It can be sent for as a hard copy or downloaded. It might help from a starting point
www.alzheimers.org.uk
It is also on you tube and in stages do you do not need to look too far ahead
Please don`t worry too much about your husband becoming difficult. It may or may not happen.
There is a useful guide to communication which may help
forum.alzheimers.org.uk
I hope this is not too much information for you at this stage. Please use it as you need it as something useful to refer to when necessary.
I know it`s not the best place to be but it certainly will be the best place to be for support and information.
The Alzheimer`s Society have published a guide to living well after diagnosis. It can be sent for as a hard copy or downloaded. It might help from a starting point
The dementia guide: Living well after your diagnosis
Have you recently been diagnosed with dementia? Get your copy of the latest version of our dementia guide. It has lots of tips and advice to help you live well with dementia and keeping doing the activities that you enjoy.
www.alzheimers.org.uk
It is also on you tube and in stages do you do not need to look too far ahead
Please don`t worry too much about your husband becoming difficult. It may or may not happen.
There is a useful guide to communication which may help
Compassionate Communication with the Memory Impaired
The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...
forum.alzheimers.org.uk
I hope this is not too much information for you at this stage. Please use it as you need it as something useful to refer to when necessary.
Welcome from me too @Emilypen
I’m sorry to read about your husband’s diagnosis. I looked after my dad with dementia and worried how I’d cope if he became aggressive or violent. I found that trying to use the compassionate communication that @Grannie G has posted invaluable for keeping him calm. I was going to post it myself!
Basically I didn’t disagree with dad but found a way to “deal” with whatever was bothering him - however delusional that might be. I became a very good actor!
I’m sorry to read about your husband’s diagnosis. I looked after my dad with dementia and worried how I’d cope if he became aggressive or violent. I found that trying to use the compassionate communication that @Grannie G has posted invaluable for keeping him calm. I was going to post it myself!
Basically I didn’t disagree with dad but found a way to “deal” with whatever was bothering him - however delusional that might be. I became a very good actor!
Welcome from me too @Emilypen. I know how devastating this diagnosis must be. My husband was diagnosed with Alzheimer’s in 2001 and died in 2016. For many of these years we managed to lead a good life - not the kind of life I had hoped we would have had but a good one none the less. There’s no denying that things got harder as the years went on but carers helped me cope. I think I got through it by taking one day at a time. I hope you and your husband can still enjoy good times together. You’ve come to the right place for help and support. Please keep posting.
I am in the same situation as you are. My husband was diagnosed with Alzheimers in January but things hadn't been right for at least two years. I too am tiny and my husband is six feet tall and like you I get angry and spiteful and bitter and all because I can't get my head round all these things. his memory is non existent, he can't spell or write or talk with lucidity and I I feel overwhelming sadness and grief and no matter what anyone says about taking one day at a time every day seems dreadful and I worry non stop about the future. I know what you are going through. I cry all the time and even to people I meet who know us which I am ashamed of but I just feel totally bereft.
I am so sorry that you are so bereft. I had no idea what was coming when my husband was diagnosed because I knew nothing about the course of the illness. We can’t do much future proofing with this illness but we can get POA done, sort out finances for the future and know a little about local nursing or care homes.
This diagnosis comes as one hell of a shock and I’m not surprised you are crying, keep on talking to us, it really does help
Warmest, Geraldine aka kindred
Dear Mrs Humphrey. It's such a dreadful situation we find ourselves in, isn't it? Nothing in our lives has prepared us for the deep sadness we both feel. I can't help thinking that the pandemic has made things so much worse. I have shielded us for 14 months, always being aware that, should anything happen to me, my husband could not cope on his own. My main worry was that my children would have to take on the responsibility of him. We have barely left the house and my husband does not really understand social distancing or washing his hands frequently. As we come to the end (hopefully) of this awful time, maybe people like you and me can start adjusting to this very new life we are both facing. There is a lot of support in my area, which I've not as yet been able to use. I hope you have similar in your area. Once we can meet with others who have experienced the grief we both feel at the moment, I think we might start to feel more positive and realise that there is a happy life to be had for us, just a very different one from the one we had imagined and hoped for. I have no doubt we will still get angry and resentful sometimes - we are, after all, only human - but we will learn how best to cope with our emotions in time. My very best wishes to both of you. Let's hope for some happy times which will sustain us through the difficult times we know we must face.
Thank you, Grannie G. I will take my time and read through this info. Maybe not all at once, there is so much to take in! I'm so grateful so much support on here.Hello @Emilypen Welcome.
I know it`s not the best place to be but it certainly will be the best place to be for support and information.
The Alzheimer`s Society have published a guide to living well after diagnosis. It can be sent for as a hard copy or downloaded. It might help from a starting point
The dementia guide: Living well after your diagnosis
Have you recently been diagnosed with dementia? Get your copy of the latest version of our dementia guide. It has lots of tips and advice to help you live well with dementia and keeping doing the activities that you enjoy.
It is also on you tube and in stages do you do not need to look too far ahead
Please don`t worry too much about your husband becoming difficult. It may or may not happen.
There is a useful guide to communication which may help
Compassionate Communication with the Memory Impaired
The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...
I hope this is not too much information for you at this stage. Please use it as you need it as something useful to refer to when necessary.
Thank you, Izzy. I'm so grateful that my husband is quite happy and content at the moment; totally unaware of his condition. The pandemic has made things so much more difficult, but we will try to get out and enjoy our life while we still can.
Hi Bunpoots. I certainly understand about being a good actor! I've learned to smile (albeit with gritted teeth!) when I see him digging the garden in his best shirt, trousers and shoes! It winds me up no end, but I'm learning, slowly, to pick my battles!
Sorry to hear of your husband’s diagnosis so you know what type of dementia it is? As it sounds like behavioural frontotemporal demetia?
I have just assumed it is Alzheimer's. Our GP just told us it was Dementia and asked my husband if he wanted to be referred to the Memory Assessment unit, but he declined. The GP then just said she was coming his records, and advised me to join Alzheimer's UK. My husband has absolutely no concept as to what dementia is and is completely unaware of his condition. Is there any value in knowing what type of dementia he has? He hates anything even remotely medical, so any tests, unless really useful, would be difficult for him.
they are quite a few of the same characteristics but some there are treatments to slow it down and others theres no treatments other than treat the symptoms so maybe its worth finding out even for that. some are generally gradual and some go down in steps. they have different signs in the brain as well eg alzheimers is plaques and vascular is narrowing of the blood vessels that limits the oxygen going to the brain which causes the damage. with vascular, there could be a danger of strokes or heart attacks. it might be good to find out but there are sometimes mixed dementias when you have more than one type
Thank you, Jennifer 1967. I'm pretty sure it won't be vascular dementia. My husband has low blood pressure and is extremely fit for his age. My mum had vascular dementia and his is not the same. He has certainly got worse recently. I'll talk to the family about any further assessment for him.
Yes it is a great shock. My husband was diagnosed with dementia 16maths ago. I also worry that I will not be able to cope. I also take one day at a time. But I am On the alert all the time waiting for the next change. I understand your sadness for your husband. It is hard for us but it must be a nightmare for them. Your husband is probably very frightened and needs to see that you are calm. Try to keep everything relaxed and take time to listen to him if he wants to talk.
I understand feel the same way my husband is in denial.....I know he is scared...and off course I dont want to make him feel worse..when I have to tell him how to work his phone or the tv remote...missed appointments although we have a clear diary on show....he rarely remembers what been said by me.....so I either remind him or just go quiet...it difficult
keep strong
My husband was diagnosed in 2019 with vascular dementia. Lockdown has really shielded us from his deterioration as he has just sat in front of the tv all the time. He has never done anything around the house or garden and had no interests other than football, suduko or going to the pub. He can no longer do suduko or go to the pub as he cannot now walk. If he comes home from hospital after having a series of falls with Carers he will just watch tv as he cannot now hold a conversation plus he is in continent. Life even in a care home will be not much different as he hates noise and people around. All people with dementia are different and I personally believe you have to ‘Go with the Flow’ and realise my husband is no longer the same person.
Dear Oshshawa,
I am so sorry to hear about your husband. Life must be really tough for you at the moment. You're right, we do have to go with the flow and realise our partners are not the same people that we married. I do think though, that sooner or later we have to think about our own health and well-being and sometimes put ourselves first. My husband is only just starting his " journey" and I know things will continue to deteriorate. Your husband, sadly, sounds as if he has deteriorated significantly. Is it not time to consider a care home. A good one would take into account his need for peace and quiet. My mum was in a dementia home and their care was excellent. It was such a hard decision for me to make, but it was the right one and she was happy there. Please consider your own physical and mental health. After all, none of us are getting any younger. I wish you well.
