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Struggling so much :(

Ang79

Registered User
Jun 11, 2016
9
Hello I’ve not posted for a while but I just feel so sad and completely lost at the moment. My lovely husband is only 48 and I’m 40, he was diagnosed with vascular dementia 5yrs ago but he also has type 1 diabetes, epilepsy and he’s registered severely sight impaired. We’ve always managed his conditions together as a team and I eventually had to give up work to become his full time carer, the last 5 years since the dementia diagnosis he has done relevantly well, he’s steadily away become slightly confused with things mainly day and night, meal times and needed more prompting to do things etc but he’s seemed to cope quiet well with the condition that is until a few months ago :(. I lost my wonderful dad in February this year and my heart is completely broken by it, he meant the absolute world to all the family and has left a massive whole in all of our lives including my husbands. Since my dads passing it just seems like he’s started to decline bit by bit to the point we’re at now. All of a sudden it seems over the last few months he’s almost fully lost the use of his legs so he’s permanently in a wheelchair now to get around and transferring him is becoming harder and harder, he’s gone from having a few accidents to becoming completely incontinent and having to wear pull ups all the time, he seems confused 90% of the time now and talks about things that make no sense to me but it obviously does to him and it’s as though he’s in another world most of the time, his diabetes is completely out of control and he’s having constant hypos where his sugars are dropping dangerously low as his appetite has gone and he will hardly eat anymore, he’s lost so much weight as well to the point his bones are starting to show :(. I do have district nurses who call once a week and a support worker who comes on a Thursday to give me a few hrs respite but I’m becoming absolutely exhausted with it all, I’m not sleeping at night as he’s having hypos and I’m so scared of leaving him as he sleeps on a special chair in the living room and doesn’t like to come out of there into the bedroom anymore :(. I had a phone call with his doctor the other day who basically said that everything that is happening to him is the dementia progressing and not being helped by his other conditions, they want to bring him a hospital bed home for the living room and he’s been assessed for some personal care support and been awarded 7 hrs a week 1 hr in a morning which I’m sorry but I think is ridiculous as 1 hr can be spent just trying to get him to swallow his medication. I just feel like I’m losing him right in front of my eyes and it’s scaring me so much, he’s my soul mate and I love him with all of my heart even though caring for him full time now is physically and mentally exhausting me :( the thought of not having him in my life terrifies me, I haven’t even had the chance yet to grieve for my dad let alone lose my husband as well. Forgot to mention that I also care for my elderly mum now since my dad passed away, they was together 62 years and she’s struggling so much with his passing too which is awful to see, she lives with us as we’ve always lived together as a family but I also feel like I don’t have any quality time with her due to my role as a carer full time for my husband. I just feel torn :(. Sorry my post is so long, I just feel so alone with everything and don’t know who to turn to, thank you for reading xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,779
Kent
I`m so sorry to read your update @Ang79 What a terrible struggle you have had. Your young ages are tragic.

There might be some help and support for you from the Admiral Nurses who specialise in supporting carers;


and also the Alzheimer`s Society`s Dementia Connect Helpline


I honestly don`t know how you are managing caring for your mother and your husband while grieving for your dad. It`s too much for anyone

I don`t know what to say to you only that I would be completely out of my depth.
 

Ang79

Registered User
Jun 11, 2016
9
thank you for the numbers for some help lines @Grannie G , it’s much appreciated, I just feel like his doctors are giving up on him but I’m certainly not ! To be honest I really don’t know how I’m coping I think I’m just running on auto pilot 😞 x
 

canary

Registered User
Feb 25, 2014
13,418
South coast
Hello @Ang79
Im sorry to hear about your husbands decline and for the loss of your dad.
Ive just started getting carers in for an hour a day with OH and although its not much I feel it has given me an extra hour during the day and its better than a poke in the eye. Think about what you would like them to do while they are here and what sort of jobs would make your life easier. Would SS not give any extra hours? I would have thought you would need more because of all the personal care you will be doing.
 

None the Wiser

Registered User
Feb 3, 2020
102
@Ang79, you are having to deal with so much at the moment. It sounds as if you’re running on empty. You need to get advice from ‘Care for the Carers’, as unfortunately until you have a catastrophic event the support isn’t very forthcoming. Do make sure that you get all the support that you’re entitled to. I hate it when people say to me “you really need to look after yourself” BUT you really do need to find some way to keep your sanity, to grieve and to adjust. The system i.e. social care is a very blunt instrument. Often what you say isn’t properly heard ( it’s a systems thing). You need to find someone who really listens, so try lots of different avenues.
Hugs to you in this very difficult time.