More worried by the day

[Anthoula]

I joined Talking Point a few months ago because my OH has Vascular Dementia and I wanted to learn of other`s experiences and how they cope, and I really am full of admiration for the ways you all manage and your dedication to supporting your partners/family members.
I was shocked and sickened when, 2 years ago, my OH was given his diagnosis by the memory clinic. It was nothing more than a few words and being handed a book about Vascular Dementia, with the understanding that his G.P. and the Alzheimer`s Society would be informed. Oh yes, we were told that the memory clinic would not see us again as there was no cure or help they could offer. I have to acknowledge that the A.S. do contact me every few months to ask how my OH and I are doing, but our G.P./medical centre have never contacted us regarding OH`s dementia. Blessed be, since the diagnosis the pattern of our lives hasn`t really changed. We have gone on holidays (although the last one was a bit of a disaster as OH had a nasty fall), visited people and places, gone for walks, shopping, gardening etc. I have even been able to go out to play golf a couple of time a week and leave OH on his own.
Nevertheless, I am finding that the more I read about the progression of dementia the more scared and worried I become as I fear that I will not be able to handle the many difficulties likely to be presented to me, and the changes it will present to both of us. I have read several times how carers feel guilty for a number of reasons, and I feel guilty, selfish and ashamed now. I have tried contacting AgeUK, Social Services etc., not for immediate assistance but simply to make them aware of us. AgeUK simply referred me to Admiral Nurses, Social Services asked me to complete on line assessments for OH and myself as carer which I did and both showed that we did not qualify for any support. I have recently registered with Admiral Nurses and am currently waiting for them to get back to me.
Now, I find myself watching OH`s every word and movement for changes. Of course there are a few, but I now find I am hesitant about either of us doing anything in case of something happening.
My goodness, writing this and rereading all I have written is therapeutic in itself and makes me realise I must give myself a good shake, and just get on with the life OH and I have together. Can not deal with what might happen until it occurs. Thank you for reading.

 

[sapphire turner]

Hi Anthoula I know how you feel and it’s hard for people not going through this to understand. It’s like we are already grieving for our lost future and guilty that we can’t carry on as if nothing has happened.
My OH is still doing quite well and wants things to be the same between us but I am afraid for the future and it’s hard to talk about.

 

[SeaSwallow]

The help available for carers seems to depend very much on where you live, some areas are better than others. I found our local AgeUK useless but others on here have found them to be very helpful. Same with the memory clinics, ours keep regular contact with hubby but you have had an entirely different experience. It is time that there was a more joined up process for dementia patients and their carers but some chance.
I would suggest that you look at carersuk.org, there should be a link to local services in your area.
You are not alone, this is the toughest job any of us can do.

 

[Xhanlbxx]

Hiya ,

Sorry to hear that you are worrying about all this because it is just a cruel illness .

I feel like a lot of families are in a similar position where we just all keep going until the changes happen and we reach breaking point.

In regards to social not helping again pulls on another nerve of mine as we have had exactly the same with my family - if you have savings or have to work it is basically like see you later you are by yourself , which is not ok.

The admiral nurse should be able to support you and help you plan for the future but getting the correct help just seems to be hard for working class families .

It is basically the type of illness where you know what is coming but you don’t know how it will affect your other half so my advice is to enjoy every moment and accept the obstacles that may come but face them as they come , it doesn’t help having some preparation in place and hopefully you have a support system , take care

 

[Xhanlbxx]

The help available for carers seems to depend very much on where you live, some areas are better than others. I found our local AgeUK useless but others on here have found them to be very helpful. Same with the memory clinics, ours keep regular contact with hubby but you have had an entirely different experience. It is time that there was a more joined up process for dementia patients and their carers but some chance.
I would suggest that you look at carersuk.org, there should be a link to local services in your area.
You are not alone, this is the toughest job any of us can do.

I agree with this as my father hasn’t seen the memory clinic since he was diagnosed in 2018 and he is in late stages now - it’s not ok , social services are also another level disgusting and drag their feet until you are ready to give up everything . I have actually contacted the local MP about our health care system because it has well and truly failed my father

 

[canary]

Hi @Anthoula

I was shocked and sickened when, 2 years ago, my OH was given his diagnosis by the memory clinic. It was nothing more than a few words and being handed a book about Vascular Dementia, with the understanding that his G.P. and the Alzheimer`s Society would be informed. Oh yes, we were told that the memory clinic would not see us again as there was no cure or help they could offer.

Im afraid that this is a common experience. I think that we as relatives of someone with dementia expect that after the diagnosis there will be advice on what to do and assistance in negotiating the maze of different agencies, but unfortunately, most memory clinics see themselves as a place for diagnosis only. After mums diagnosis she too was discharged back to the GP (who although sympathetic, knew very little about dementia) and I left with a fist full of leaflets.

Nevertheless, I am finding that the more I read about the progression of dementia the more scared and worried I become as I fear that I will not be able to handle the many difficulties likely to be presented to me, and the changes it will present to both of us

Please dont try and look into the future. Not everything that you read will happen to you and/or your OH. With dementia there is an array of symptoms that are common to dementia, but no-one gets all of them - you could end up worrying your socks off about something that never happens. Reading things on here can be a useful guide on what to expect and give prior warning - eg when mum started to think that things that she saw on TV were actually happening to her in her own home, I had read about this and thought Aha! Weve reached this stage, and looked up how people dealt with it. Not everyone gets this, though.

I would also like to say that when you are a carer you sort of slide into caring - you are seldom faced with it all at once - and you sort of learn how to cope with things because it is a gradual change. I have dealt with things that if you had told me about them in advance I would have been horrified and would not have believed that I could do it, yet when faced with them, I have found that you just take a deep breath and do it. Please dont worry that you will be tried and found wanting. You wont know what you can do until you have to and if you cant, well there is no shame in it as you will have done your best. We all reach the stage eventually when we can do no more. Learn to acknowledge when you are struggling and get extra help in.
xxx

 

[DreamsAreReal]

Aww, bless your heart. I think we all go through that stage of anticipating horrors in the future and getting ourselves in a state. I know I did it for years! Especially when you come on TP and read about people struggling with incontinence or aggression and whatnot.

Don't forget that people will post on here at their lowest ebb. I think my own first post on here was when I was panicking about diarrhoea and meds! That was 1 day out of 365. The other 364 days probably weren't noteworthy.

It's useful to find out as much as you can about Dementia imo, forewarned is forearmed and all that, but don't assume all the horrible things will happen. They don't for everyone. My pwd recognised me to the end, was never aggressive, kept her empathy etc etc.

It does annoy me that the authorities let people go off with a leaflet and a diagnosis and let them get on with it. Pwd and their carers really are short changed.

I'm glad you found writing it all down therapeutic. It's also a good idea for later on, I used to write down mum's symptoms in a diary so I could see changes or just have an idea of what to tell her doc, otherwise I'd forget. Have a read of my signature link, if you haven't already. It can be helpful. Best wishes x

 

[jennifer1967]

my husband was diagnosed in march 2020 2 weeks before first lockdown and he was shielding as well. i got the diagnosis over the phone and had to tell my husband myself. we were referred to AS and admiral nurses. dont rate admiral nurses but the dementia navigator was brilliant. i was then diagnosed with a chronic pain condition and she liaised for me as it was a long winded process. it cant be cured but managed. she said about benefits etc. she was the base that knew of all the other services and organisations that we would find useful. we have never had any contact with the memory clinic, they did the test and diagnosed. as there is no meds that are for vascular dementia i suppose there was little they could do. MH prescribed tablets to alleviate symptoms[aggression]then back to the gp. i have dealt with things as ive gone along. or asked if i didnt know. as long as i can manage with what i have then the future can take care of itself. im not going to think up problems or scenarios but deal day to day. it would be overwhelming

 

[NEESE201]

I joined Talking Point a few months ago because my OH has Vascular Dementia and I wanted to learn of other`s experiences and how they cope, and I really am full of admiration for the ways you all manage and your dedication to supporting your partners/family members.
I was shocked and sickened when, 2 years ago, my OH was given his diagnosis by the memory clinic. It was nothing more than a few words and being handed a book about Vascular Dementia, with the understanding that his G.P. and the Alzheimer`s Society would be informed. Oh yes, we were told that the memory clinic would not see us again as there was no cure or help they could offer. I have to acknowledge that the A.S. do contact me every few months to ask how my OH and I are doing, but our G.P./medical centre have never contacted us regarding OH`s dementia. Blessed be, since the diagnosis the pattern of our lives hasn`t really changed. We have gone on holidays (although the last one was a bit of a disaster as OH had a nasty fall), visited people and places, gone for walks, shopping, gardening etc. I have even been able to go out to play golf a couple of time a week and leave OH on his own.
Nevertheless, I am finding that the more I read about the progression of dementia the more scared and worried I become as I fear that I will not be able to handle the many difficulties likely to be presented to me, and the changes it will present to both of us. I have read several times how carers feel guilty for a number of reasons, and I feel guilty, selfish and ashamed now. I have tried contacting AgeUK, Social Services etc., not for immediate assistance but simply to make them aware of us. AgeUK simply referred me to Admiral Nurses, Social Services asked me to complete on line assessments for OH and myself as carer which I did and both showed that we did not qualify for any support. I have recently registered with Admiral Nurses and am currently waiting for them to get back to me.
Now, I find myself watching OH`s every word and movement for changes. Of course there are a few, but I now find I am hesitant about either of us doing anything in case of something happening.
My goodness, writing this and rereading all I have written is therapeutic in itself and makes me realise I must give myself a good shake, and just get on with the life OH and I have together. Can not deal with what might happen until it occurs. Thank you for reading.

Hi I fear the future in case I am not strong enough and already feel guilty I want some kind of life (a little freedom) my husband does not seem to want to help now or do much - and I crave a little independence - I miss him so even though he is still here -Neese

 

[Suesue.G.]

NEESE201. I know what you mean and, eventho, we all have very different experiences, I think I know how you feel. My OH was diagnosed in 2020, by the Memory Clinic. He was prescribed Galatamin, which has slowed down the Alzheimers part, but the Vascular Dementia marches on. We did get visits from OT, in the beginning , and, she was great. He was referred to Hospice, a few months ago, and, it was so reassuring to know they were there. We are "managing well" so he has been discharged from their Care, for now. Obviously, I am relieved that they feel he does not need them yet, but feel cast adrift again, to get on with it, as best we can. Dementia UK were helpful and were good to talk to. We don't have Admiral nurses, in our area, unfortunately, but,I believe they are a great help, if you have them.

 

[Bod]

Don't worry too much about the future, everyone's dementia road is different, so go so easily you'd never notice, others not so.
To help yourself, it would be wise to start some things off now.
Have help coming into the house, cleaner, gardener, etc. so he gets used to having "strangers" in the house.
Get into routines, for meal times, getting up, and going to bed, daily bath/shower, (whether he needs it or not!) changing clothes.
Start to get family finances under your understanding/control, and driving, you becoming main/only car driver.
These are points that often become difficult, if not attended to early whilst there is still a degree of understanding and co-operation.

Stay with us here, what ever happens, someone here will have been there before, and we all "know" what it's like.

Bod
(Who's father and both in-laws had the diagnosis)

 

[Agzy]

Hard as it is for us to accept there is absolutely no avenue of joined up support for caregivers and receivers within the NHS. This is not the fault of the NHS but of successive governments and, in particular the fragmentaction of almost all aspects of care into the private sector via charities and we, the voluntary army that puts up with it because we truly do ‘care.’

 

[NEESE201]

I joined Talking Point a few months ago because my OH has Vascular Dementia and I wanted to learn of other`s experiences and how they cope, and I really am full of admiration for the ways you all manage and your dedication to supporting your partners/family members.
I was shocked and sickened when, 2 years ago, my OH was given his diagnosis by the memory clinic. It was nothing more than a few words and being handed a book about Vascular Dementia, with the understanding that his G.P. and the Alzheimer`s Society would be informed. Oh yes, we were told that the memory clinic would not see us again as there was no cure or help they could offer. I have to acknowledge that the A.S. do contact me every few months to ask how my OH and I are doing, but our G.P./medical centre have never contacted us regarding OH`s dementia. Blessed be, since the diagnosis the pattern of our lives hasn`t really changed. We have gone on holidays (although the last one was a bit of a disaster as OH had a nasty fall), visited people and places, gone for walks, shopping, gardening etc. I have even been able to go out to play golf a couple of time a week and leave OH on his own.
Nevertheless, I am finding that the more I read about the progression of dementia the more scared and worried I become as I fear that I will not be able to handle the many difficulties likely to be presented to me, and the changes it will present to both of us. I have read several times how carers feel guilty for a number of reasons, and I feel guilty, selfish and ashamed now. I have tried contacting AgeUK, Social Services etc., not for immediate assistance but simply to make them aware of us. AgeUK simply referred me to Admiral Nurses, Social Services asked me to complete on line assessments for OH and myself as carer which I did and both showed that we did not qualify for any support. I have recently registered with Admiral Nurses and am currently waiting for them to get back to me.
Now, I find myself watching OH`s every word and movement for changes. Of course there are a few, but I now find I am hesitant about either of us doing anything in case of something happening.
My goodness, writing this and rereading all I have written is therapeutic in itself and makes me realise I must give myself a good shake, and just get on with the life OH and I have together. Can not deal with what might happen until it occurs. Thank you for reading.

Hi my husband. Was. Diagnosed October 2020 age 64 but they think he has had it for more than 2 years before - i feel our husbands are at a similar stage - need help but not quite there - I feel just like you - just coping scared of the future - feel on my own - until this site - neese