New to all this

[member74974]

We realised something wasn’t right about 5 years ago. My husband has been monitored annually since then. They thought it was Parkinson’s for a while. He hasn’t received a diagnosis yet. Recently it’s all got worse. I feel I have 2 husbands, Mr A, who I’ve been happily married to for a very long time, and now Mr B. Not my lovely, caring man, but Mr B, rather short tempered and helpless, without the intelligence of my man. I have to deal with both, without taking the independence and dignity away from Mr A. It’s hard.

I considered finding a counsellor to speak to occasionally, but I really don’t want to get into that. I did speak to someone, who started talking about our family and sharing emotions. I don’t need that, I’ve got enough. So maybe a forum where other people are going/have been through the same thing is the answer.

 

[karaokePete]

We realised something wasn’t right about 5 years ago. My husband has been monitored annually since then. They thought it was Parkinson’s for a while. He hasn’t received a diagnosis yet. Recently it’s all got worse. I feel I have 2 husbands, Mr A, who I’ve been happily married to for a very long time, and now Mr B. Not my lovely, caring man, but Mr B, rather short tempered and helpless, without the intelligence of my man. I have to deal with both, without taking the independence and dignity away from Mr A. It’s hard.

I considered finding a counsellor to speak to occasionally, but I really don’t want to get into that. I did speak to someone, who started talking about our family and sharing emotions. I don’t need that, I’ve got enough. So maybe a forum where other people are going/have been through the same thing is the answer.

Hello and welcome to TP. I hope you find this a friendly, informative and supportive place.

You will get empathy here as we all travel the same bumpy road.

In the hope that it help with any communication difficulties, you may find this thread a very useful read https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

You may also find some benefit in this handy factsheet from AS https://www.alzheimers.org.uk/sites...ing_and_supporting_a_person_with_dementia.pdf

 

[Izzy]

Hi @Greyhound owner and welcome to Talking Point.

I'm sure you'e going to find the forum really helpful.

.......maybe a forum where other people are going/have been through the same thing is the answer.

- I certainly found that to be the case. Looking forward to 'seeing' you around.

 

[Grahamstown]

There is the person we loved and there is the unknown person who inhabits the body of our loved one. Sometimes they are balanced and sometimes one side dominates. When it’s the ‘old’ person life seems recognisable, but when it’s the ‘new’ person it’s pretty bad and we can hardly recognise them. I too wondered how I was going to cope and who would help me, and then I found Talking Point and it helps enormously. I have learned more about the disease and how to manage on the forums than any professional could tell me, because it comes from experience of living with it, rather than observing it from time to time. So I hope that it can help you too.

 

[Malalie]

Hello and welcome here. There's lots of people who are, or have been or have gone through the same experiences as you and lots of opinions and advice freely given.

My experience was with my MIL (Totally different relationship I know...) We do share the fact that we want our People with Dementia to retain their dignity and I know that that is very hard. I suppose that an actual diagnosis would be helpful for you, and I'm glad that your OH appears to be happy with his check ups. If you think things are changing more rapidly do get back to your doctor/ memory clinic - please don't suffer in silence waiting for an appointment.

Once I found out that MIL was not just suffering from general ageing and memory loss and cussedness this was very helpful

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

It stopped me getting cross with her and made me be kinder and more understanding.

I would advise setting up a Power of Attorney here : https://www.gov.uk/power-of-attorney (it costs about £82) which would help you in the future should things become difficult with wanting to pay for carers or whatever. (Lots of advice on here about setting one up if the PWD is reluctant.) Maybe you have done that already.....just wanted to say that you are not alone......

 

[Manc70]

We realised something wasn’t right about 5 years ago. My husband has been monitored annually since then. They thought it was Parkinson’s for a while. He hasn’t received a diagnosis yet. Recently it’s all got worse. I feel I have 2 husbands, Mr A, who I’ve been happily married to for a very long time, and now Mr B. Not my lovely, caring man, but Mr B, rather short tempered and helpless, without the intelligence of my man. I have to deal with both, without taking the independence and dignity away from Mr A. It’s hard.

I considered finding a counsellor to speak to occasionally, but I really don’t want to get into that. I did speak to someone, who started talking about our family and sharing emotions. I don’t need that, I’ve got enough. So maybe a forum where other people are going/have been through the same thing is the answer.

Hi, I hope you find TP as helpful and comforting at times as I have as a fairly new member. Parts of your post, as with many others I have read, are so recognisable and your description of two husbands is so familiar. I’ve been married 46 years and from knowing something was wrong for maybe two years and then two and a half years of various tests, MRIs, (we can’t fault the care of the GP and neurologist) we finally got the diagnosis I knew would come. As horrendously sad as it was it was almost a relief to be told and him to start medication (who knows if it’s any good but glad there are no horrible side effects). But yes, one day (sometimes even just for hours) I have the familiar man, the love of my life, and then almost without warning the confused, grumpy, frightened man shows through and as you say it’s a balancing act not to make things worse by taking their independence away by taking charge.
I do hope you find this wonderful forum helpful, there is such a lot of experience and knowledge on here as well as bucket loads of kindness. Take care

 

[member74974]

Thank you all for your helpful messages. I think this is what I’ve been looking for. I’ve never joined anything like this before. Bless you all.

 

[member74974]

I’ve just read ‘Compassionate Communication ‘. It’s very helpful. Thank you. I’ll take some time to digest it and then read the fact sheet.

 

[Grahamstown]

I’ve just read ‘Compassionate Communication ‘. It’s very helpful. Thank you. I’ll take some time to digest it and then read the fact sheet.

Yes I read that too. I try but find it quite hard at times, but I guess if you get it a bit right that’s better than nothing.

 

[member74974]

Yes, I’m sure you’re right!

 

[imsoblue]

We realised something wasn’t right about 5 years ago. My husband has been monitored annually since then. They thought it was Parkinson’s for a while. He hasn’t received a diagnosis yet. Recently it’s all got worse. I feel I have 2 husbands, Mr A, who I’ve been happily married to for a very long time, and now Mr B. Not my lovely, caring man, but Mr B, rather short tempered and helpless, without the intelligence of my man. I have to deal with both, without taking the independence and dignity away from Mr A. It’s hard.

I considered finding a counsellor to speak to occasionally, but I really don’t want to get into that. I did speak to someone, who started talking about our family and sharing emotions. I don’t need that, I’ve got enough. So maybe a forum where other people are going/have been through the same thing is the answer.

Welcome to this world. I just wanted to let you know my OH has a form of ParkinsonISM. Parkinsonism is the umbrella disease title. Eighty-five percent of people under that umbrella have Parkinson's. My OH is in the other 15%. No tremors. It began with him shuffling his feet and not being able to get up off the sofa. We even bought a new sofa! When he couldn't walk after an elevator opened and he had great difficulty going through doorways, it was diagnosed as "Primary Progressive Freezing of Gait." However, since it's still a Parkinsonism, he has stiff muscles and now dementia. A year ago we were on a beach with our family after his retirement and passing the test to sell real estate. One year. Today he lives in an assisted living home and I am alone. And it was one of the worst years of my life, for sure the worst year of our marriage. We've been married 22 years.
So I have a physically and mentally challenged OH. It's a tough world. Those of us on TP are tough too. We have to be.

 

[Grahamstown]

Welcome to this world. I just wanted to let you know my OH has a form of ParkinsonISM. Parkinsonism is the umbrella disease title. Eighty-five percent of people under that umbrella have Parkinson's. My OH is in the other 15%. No tremors. It began with him shuffling his feet and not being able to get up off the sofa. We even bought a new sofa! When he couldn't walk after an elevator opened and he had great difficulty going through doorways, it was diagnosed as "Primary Progressive Freezing of Gait." However, since it's still a Parkinsonism, he has stiff muscles and now dementia. A year ago we were on a beach with our family after his retirement and passing the test to sell real estate. One year. Today he lives in an assisted living home and I am alone. And it was one of the worst years of my life, for sure the worst year of our marriage. We've been married 22 years.
So I have a physically and mentally challenged OH. It's a tough world. Those of us on TP are tough too. We have to be.

Good to see your post @imsoblue and it never ends does it? Now you are alone and it has all happened so quickly with such trauma along the way. I hope life has some consolation for you and that you have some good moments too. Losing your partner to dementia and away from you is a strange loss to deal with and I hope you are coping.

 

[imsoblue]

Good to see your post @imsoblue and it never ends does it? Now you are alone and it has all happened so quickly with such trauma along the way. I hope life has some consolation for you and that you have some good moments too. Losing your partner to dementia and away from you is a strange loss to deal with and I hope you are coping.

Thanks @Grahamstown. I've been posting my trauma on my thread imsoblue. It took me awhile to even write it down. I will be okay.

 

[member74974]

I’m so sad to hear your story Insoluble. I can comfort myself that we’ve had over 50 years together, and a number of years of contented retirement. The onset of this form of this horrible disease has either been very slow in our case, or we’ve been aware of symptoms from a very, very early stage. We’ve comforted ourselves with the fact that we’ve been able to discuss things openly, and the fact that we both have a sense of humour. But things are changing now. But as you say, we’re strong. We have to be.

 

[member74974]

I’m so glad I’ve discovered this forum. It’s a relief to me able to express emotions openly, to share experiences. Friends don’t realise and I can see some can’t cope with others who have trodden this path earlier. Children often can’t face the reality either. But here is somewhere to share experiences and help each other. What a relief.

 

[Grahamstown]

I’m so glad I’ve discovered this forum. It’s a relief to me able to express emotions openly, to share experiences. Friends don’t realise and I can see some can’t cope with others who have trodden this path earlier. Children often can’t face the reality either. But here is somewhere to share experiences and help each other. What a relief.

I couldn’t agree more with everything you have said. I share similar experiences to yours, as with others on the forums, and can safely say that I would have cracked up if I had not been able to get it out on TP, or I would have gone to the GP for help which I expect would have meant a long wait and little support. Now I don’t need to do that because when it gets too much there is always a safety valve here.

 

[kindred]

Welcome to this world. I just wanted to let you know my OH has a form of ParkinsonISM. Parkinsonism is the umbrella disease title. Eighty-five percent of people under that umbrella have Parkinson's. My OH is in the other 15%. No tremors. It began with him shuffling his feet and not being able to get up off the sofa. We even bought a new sofa! When he couldn't walk after an elevator opened and he had great difficulty going through doorways, it was diagnosed as "Primary Progressive Freezing of Gait." However, since it's still a Parkinsonism, he has stiff muscles and now dementia. A year ago we were on a beach with our family after his retirement and passing the test to sell real estate. One year. Today he lives in an assisted living home and I am alone. And it was one of the worst years of my life, for sure the worst year of our marriage. We've been married 22 years.
So I have a physically and mentally challenged OH. It's a tough world. Those of us on TP are tough too. We have to be.

Thank you so much for posting. Yes, we have to be tough. I am so sorry about it being one of the worst years of your life . I only got through because I wrote 100 lines each night: I must endure. But OH had accident, a and e admission, best interests stateent against living at home as it took 3 of them to manage what I had been doing alone. I know, I know. Only one year ago, OH and I were wandering through wildlflower meaows and now he cannot even stand up! One year, as you say, sweetheart, one year. all strength to you. with love, Geraldine aka kindred

 

[imsoblue]

Thank you so much for posting. Yes, we have to be tough. I am so sorry about it being one of the worst years of your life . I only got through because I wrote 100 lines each night: I must endure. But OH had accident, a and e admission, best interests stateent against living at home as it took 3 of them to manage what I had been doing alone. I know, I know. Only one year ago, OH and I were wandering through wildlflower meaows and now he cannot even stand up! One year, as you say, sweetheart, one year. all strength to you. with love, Geraldine aka kindred

Yes we are “@kindred spirits” in this time length of one year. And I so enjoy reading your posts. Thank you so much for being there for me and others.

 

[kindred]

Yes we are “@kindred spirits” in this time length of one year. And I so enjoy reading your posts. Thank you so much for being there for me and others.

Thank YOU!!
Gxx

 

[member74974]

A bit of a gush.

Just to say (again), thank you all. I’ve dealt with dementia before, with my mother-inl-law, but a partner is quite different.

I’ve seen a lot of stages with her, and to those who are completely new to this, she was lovely for the last two years, when she was very vulnerable and had to go into in a Care Home. Warm, affectionate, funny. She wasn’t like that before, and we had abusive phone calls, and other things. She would never have liked anyone who married her only child, but when she didn’t know who I was, she was lovely! We are grateful for those last two years! We were lucky and I’m well aware it’s frequently not like that.

But now it’s my partner, it’s quite different. And every new thing is a shock.
I have read the leaflet about Compassionate Communication a few times now,and it’s very helpful. And it reminds me of how you teach very low level learners English. Keeping things simple, repeating things in the same simple phrases. ( Their English is the lowest level, but they are not, nor is their intelligence level). And as for not taking things personally - well, that’s me!

So, after feeling very, very isolated, I now feel there’s somewhere to turn on this new journey. Life’s full of surprises, not all of them welcome.

Thank you all again.