I hate dementia and we have barely started

[nae sporran]

Hullo forum,
I read posts on here by people suffering worse or supporting those suffering worse so you all have my sympathy and respect.
OH has fairly mild early stage Vascular Dementia, but already I struggle with accumulated little things. She cannot deal with her mother's death 25 years ago and had to grieve her cousin's death again as she forgot and we clumsily reminded her. I suppose it is part of getting old, but the dementia seems to magnify it.
She cannot follow simple tv plots, so I can't either due to distractions of keeping her abreast of developments. The only pleasure left is music when she stays awake long enough.
Family just don't get it, even when offering an ear they soon steer the conversation to their own concerns. Maybe I am being selfish, but it is hard repeating yourself, unable to properly unwind.
Not sure if am looking for advice or sympathy or just unloading. Thanks for reading.

 

[Blackfield]

Hullo forum,
I read posts on here by people suffering worse or supporting those suffering worse so you all have my sympathy and respect.
OH has fairly mild early stage Vascular Dementia, but already I struggle with accumulated little things. She cannot deal with her mother's death 25 years ago and had to grieve her cousin's death again as she forgot and we clumsily reminded her. I suppose it is part of getting old, but the dementia seems to magnify it.
She cannot follow simple tv plots, so I can't either due to distractions of keeping her abreast of developments. The only pleasure left is music when she stays awake long enough.
Family just don't get it, even when offering an ear they soon steer the conversation to their own concerns. Maybe I am being selfish, but it is hard repeating yourself, unable to properly unwind.
Not sure if am looking for advice or sympathy or just unloading. Thanks for reading.

I don't think anyone really understands what it is like living with someone with dementia 24/7. I admire my Mum for looking after dad but I can see her deteriorating due to the day to day stress. We're at the stage where it would be better for her if his Alzheimer's was bad enough to send him to respite for a while without too much fuss. He has no idea how difficult he is to be with. You are definitely not being selfish and need to try and arrange regular breaks away so you can unwind. Perhaps your family could take on a little more responsibility. It will only be after they have spent time with OH that they will fully appreciate what you are going through.

 

[nae sporran]

I don't think anyone really understands what it is like living with someone with dementia 24/7. I admire my Mum for looking after dad but I can see her deteriorating due to the day to day stress. We're at the stage where it would be better for her if his Alzheimer's was bad enough to send him to respite for a while without too much fuss. He has no idea how difficult he is to be with. You are definitely not being selfish and need to try and arrange regular breaks away so you can unwind. Perhaps your family could take on a little more responsibility. It will only be after they have spent time with OH that they will fully appreciate what you are going through.

Thanks blackfield. Not sure if family can help, her daughter panics too easily if I suggest am struggling to cope and son is 70 miles away with a wife who has chronic lung problem and a young son. Any advice on dealing with that would be appreciated. My family are 400 miles away and useless anyway.

 

[henfenywfach]

Hullo forum,
I read posts on here by people suffering worse or supporting those suffering worse so you all have my sympathy and respect.
OH has fairly mild early stage Vascular Dementia, but already I struggle with accumulated little things. She cannot deal with her mother's death 25 years ago and had to grieve her cousin's death again as she forgot and we clumsily reminded her. I suppose it is part of getting old, but the dementia seems to magnify it.
She cannot follow simple tv plots, so I can't either due to distractions of keeping her abreast of developments. The only pleasure left is music when she stays awake long enough.
Family just don't get it, even when offering an ear they soon steer the conversation to their own concerns. Maybe I am being selfish, but it is hard repeating yourself, unable to properly unwind.
Not sure if am looking for advice or sympathy or just unloading. Thanks for reading.

Hi!..i hope you ll find comfort in that your not alone..
I care for my dad and sometimes my mum and sister cant see whats happening...

What i will say is if you can go to alzeimer activities such as singing or choir..all abilities go and carers...it does help..being in enviroments where you need not say..people just understand and feel the same is vital to coping..
You ll realise how little people know or understand....and thats why im doing dementia friends sessions..
Quite frankly my father deserves better..than ignorance..
His community are very good to be fair

Sent from my GT-I9505 using Talking Point mobile app

 

[stanleypj]

Hullo forum,
I read posts on here by people suffering worse or supporting those suffering worse so you all have my sympathy and respect.
OH has fairly mild early stage Vascular Dementia, but already I struggle with accumulated little things. She cannot deal with her mother's death 25 years ago and had to grieve her cousin's death again as she forgot and we clumsily reminded her. I suppose it is part of getting old, but the dementia seems to magnify it.
She cannot follow simple tv plots, so I can't either due to distractions of keeping her abreast of developments. The only pleasure left is music when she stays awake long enough.
Family just don't get it, even when offering an ear they soon steer the conversation to their own concerns. Maybe I am being selfish, but it is hard repeating yourself, unable to properly unwind.
Not sure if am looking for advice or sympathy or just unloading. Thanks for reading.

Feel free to unload.

Have you had a carer's assessment? You are entitled to one. It may or may not lead anywhere but you never know.

You mention music and I second the idea that dementia friendly singing groups can be great.

Do you have a local Alzheimer's Society branch? They should be able to tell you what's on locally in terms of day centres/activities/support groups.

Likewise Admiral Nurses.

Although we know there's no cure there are a lot of things that can improve our lives.

Keep on reading and postsing.

 

[Emily M]

No-one chooses their lot and you have been thrown into a situation that you probably feel ill-prepared to cope with.

Mum went through a stage of getting very upset about her sister's death that happened over 70 years ago. If it is any comfort that phase seems to have passed. Her husband found it difficult to cope with this, along with her constantly repeating things and the violent mood swings. He became very snappy and aggressive with all the frustration and anger being directed at family. He turned down help then complained that no-one did anything. It was probably a matter of pride and not admitting that he couldn't cope. Luckily things are better now; he is willing to accept help from family and a care package is in place and this has helped him tremendously.

I suppose what I am saying is don't be afraid to ask for help directly. Your family may not be able or willing to help, but it is worth asking anyway. Does she have a social worker who would be able to arrange for carers to come in for a few hours a week, or even possibly arrange respite? Don't play things down - tell them you are finding it difficult to cope. Unfortunately those that make the most noise get the most help.

 

[nae sporran]

Thanks for all your support and wish you all well in your battles.
Not sure if OH will accept respite care and Admiral Nurses don't think seem to be round here, but will definitely look again at memory cafes to see what they offer. Might take some assertiveness training to get family sorted, but thanks for conffidence boost.

 

[stanleypj]

It's a great pity that this fantastic charity only has the money to fund a limited number of Admiral Nurses and, as you say, there are none in Bristol.

Did you see that they have a direct phoneline? It might still be useful to have a discussion.

 

[Patricia Alice]

Hullo forum,
I read posts on here by people suffering worse or supporting those suffering worse so you all have my sympathy and respect.
OH has fairly mild early stage Vascular Dementia, but already I struggle with accumulated little things. She cannot deal with her mother's death 25 years ago and had to grieve her cousin's death again as she forgot and we clumsily reminded her. I suppose it is part of getting old, but the dementia seems to magnify it.
She cannot follow simple tv plots, so I can't either due to distractions of keeping her abreast of developments. The only pleasure left is music when she stays awake long enough.
Family just don't get it, even when offering an ear they soon steer the conversation to their own concerns. Maybe I am being selfish, but it is hard repeating yourself, unable to properly unwind.
Not sure if am looking for advice or sympathy or just unloading. Thanks for reading.

I am with you 100 per cent. My mum has been in a care home 8 weeks, we thought this would be best all round, but I still spend my visits repeating over and over where she now lives but sadly nothing stays in her brain any more. She gets no enjoyment from TV as she has no concentration span, but music does seem to help and she sings along. What we are finding now is that she is frightened all the time, even when we are with her, she says her stomach is going over and over.

You are not alone. I only joined last week as was astonished at how many other people are in the same boat as us. Keep your chin up as best you can.

 

[Richierich]

I feel for you and sadly we are all going through our own version of your story... How do you cope... Who knows!! It's just a case of doing your best how and when you can.

I constantly best myself up that I'm not able to do more, then I get sad, then I get angry, then frustrated and so on... Put simply, it's not easy so give yourself a big pat on the back because whatever you are doing... You are doing a fantastic job


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[nae sporran]

I feel for you and sadly we are all going through our own version of your story... How do you cope... Who knows!! It's just a case of doing your best how and when you can.

I constantly best myself up that I'm not able to do more, then I get sad, then I get angry, then frustrated and so on... Put simply, it's not easy so give yourself a big pat on the back because whatever you are doing... You are doing a fantastic job


Sent from my iPhone using Talking Point

Thanks for that Richie and everyone. Read another thread or two now about frustration, have to keep reminding ourselves as carers it is more frustrating for sufferers.

 

[Izzy]

It's a great pity that this fantastic charity only has the money to fund a limited number of Admiral Nurses and, as you say, there are none in Bristol.

Did you see that they have a direct phoneline? It might still be useful to have a discussion.

I have emailed the Admiral Nurses. I got a really helpful response from them even though they don't operate in Scotland. They also offered to speak to me by phone.