Turning me into a nasty person!

[Fishgirl]

Hi @Fishgirl you can feel so isolated even with a lot of friends and family. I had the constant 'where are you going on your holidays?' etc. and a look of astonishment when I said I wasn't having one - knowing I couldn't go away, it wasn't possible. As I say, it is so difficult for someone to understand that hasn't lived it - I certainly couldn't explain it. On a lighter note something that made me chuckle was last year during the World Cup I went out to watch one of the England games - the home care company at the time did me proud by calling my sibling rather than me (a first) with the inevitable problem that had cropped up with Mum (confusion, not recognising her surroundings etc) - a nice surprise for my sister who wasn't sure what to do (she lives a distance away) !!

Yes maybe we really should say OK I’ll go away and let them all have a couple of days each walking in our shoes, they’d soon change their tune!

 

[Fishgirl]

@Fishgirl oh I so so know what you mean! I do feel like life is definatly not fair at times. A year ago I stopped working (at 62), gave up a job I enjoyed to stay at home to look after OH. Which is better for him but me???
If I keep getting asked "how are you enjoying being retired" think I'll scream. After a year I think it's time I told people some home truths, because I wouldn't call it enjoyment! Rant over But we're all on your side. Big hugs x

Thanks so much Janie M, big hugs to you too, we so need them!xxx

 

[Grahamstown]

Got to do the dreaded supermarket run now, where he’ll keep staying in the middle of the aisle tutting and swearing to himself and going standing in the checkout que before I’ve finished shopping. Oh lord give me strength!

Oh I remember the dreaded supermarket run. No longer possible now and I shop online, and fill in near home for milk etc.

 

[Fishgirl]

Oh I remember the dreaded supermarket run. No longer possible now and I shop online, and fill in near home for milk etc.

Online shopping will probably be my next tactic, but as traumatic as it is, even that gets me out for a while! Crazy isn’t it x

 

[Philbo]

Thanks for the hug Karaoke Pete and the reply Philbo, I think people have given up asking me to go anywhere now, but I just can’t bring myself to leave him even for an hour or so, because he gets so distressed and agitated. I know they don’t really understand though, and just think I’m being over protective!

Not wanting to make my previous reply too lengthy, I didn't include how my situation changed dramatically, following my wife's last period of respite at the end of July (see my post "Respite Woes").

I am now in the situation where my wife is in temporary residential care (higher level, as she needs 2 people to help her transfer from bed to toilet, to lounge etc), whilst the LA processes labour on.

So I am now getting comments like "it must be so much easier for you, now that she is being looked after"! Yes, the physical stress is easier but the mental stress is through the roof!
Good job I've got a drawer full of "big boy pants" so I can put on a brave face (stop the world I want to get off!).

 

[Unhappy15]

Hello Fishgirl,
I have really appreciated this thread and all of the comments, I can only say that if you consider yourself a nasty person I must be pure evil.
My husband is 12 years older than me and insisted that I keep working until I was 60, three years into my retirement his illnesses started and now I find that the last ten years have been around of hospitals, clinics etc everything is about him.
Four years ago he was sectioned and since then has been in care but I must be so brainwashed that I visit everyday, I just never take a break, but believe me I am resentful, all the things I wanted to do have just not happened and so far the care costs are running at £191000 as we are self funding.
Some days I just want to scream 'what about me' but I think if I started screaming I wouldn't stop.
I am envious of couples who seem to be enjoying life and I have found that for me, although he is in care I have no freedom. I am frightened to go on holiday because I have this vision of something happening and not being able to get back.
I do ponder the future and I think at this rate it looks a bit daunting, he will be cared for but if I outlive him I will be on my own and pretty skint. Still who said life is fair, it's most certainly not for people in our situation.
Best wishes to all on this journey.
Kathy

 

[Unhappy15]

Hello Fishgirl,
I have really appreciated this thread and all of the comments, I can only say that if you consider yourself a nasty person I must be pure evil.
My husband is 12 years older than me and insisted that I keep working until I was 60, three years into my retirement his illnesses started and now I find that the last ten years have been around of hospitals, clinics etc everything is about him.
Four years ago he was sectioned and since then has been in care but I must be so brainwashed that I visit everyday, I just never take a break, but believe me I am resentful, all the things I wanted to do have just not happened and so far the care costs are running at £191000 as we are self funding.
Some days I just want to scream 'what about me' but I think if I started screaming I wouldn't stop.
I am envious of couples who seem to be enjoying life and I have found that for me, although he is in care I have no freedom. I am frightened to go on holiday because I have this vision of something happening and not being able to get back.
I do ponder the future and I think at this rate it looks a bit daunting, he will be cared for but if I outlive him I will be on my own and pretty skint. Still who said life is fair, it's most certainly not for people in our situation.
Best wishes to all on this journey.
Kathy

 

[Grahamstown]

my Facebook page

Hi duggies-girl this rang bells with me because I have almost stopped looking at FB and I used to love interacting on Instagram and I never go there now. I check Facebook occasionally just to see the alerts when I have posted an item to sell. Otherwise I find both really debilitating and cheerless now.

 

[TNJJ]

Hi.I thought when people were sectioned that their care was paid for under Continuing Healthcare??All care and how it gets paid is so confusing!

 

[Nichola1965]

Thanks for the hug Karaoke Pete and the reply Philbo, I think people have given up asking me to go anywhere now, but I just can’t bring myself to leave him even for an hour or so, because he gets so distressed and agitated. I know they don’t really understand though, and just think I’m being over protective!

Hi "Fishgirl"
I REALLY understand what you are going through....the trouble is, until you are in this situation you cannot possibly understand it......I am in a similar situation with both my parents, and it is just draining and exhausting...I never stop thinking about them and their needs...
You are going through FAR worse, and I cannot begin to imagine how you cope with losing the close relationship you had with your other-half....you have lost all the support you had from them when you were part of a couple, and In my opinion what you are going through is like a long drawn out bereavement but there is none of the usual 'support' you would get in that case....NO-ONE can understand how you feel....and I understand that you could easily feel angry, exhausted, vulnerable and so, so lonely.......
In my opinion you need to acknowledge what you are feeling and not judge yourself....no-one here is going to think anything bad about what you say or express....I think we all feel angry, distressed, depressed and lonely, doing this.....
Please try to find someone to talk to about what is happening to you......please look into getting some respite care...so that you can get out of the house and 'breathe'.....you must take care of yourself too.

 

[Duggies-girl]

Hi duggies-girl this rang bells with me because I have almost stopped looking at FB and I used to love interacting on Instagram and I never go there now. I check Facebook occasionally just to see the alerts when I have posted an item to sell. Otherwise I find both really debilitating and cheerless now.

@Grahamstown I still go on Facebook as I belong to some groups that I find extremely useful but this constant 'look at us and what a good time we are having' does get me down.

Blocking posts works well and the poster doesn't know it's been done. I suppose it is kinder than unfriending them and I suppose that means that I am still a kind person which I am pleased about.

 

[Grahamstown]

Blocking posts works well and the poster doesn't know it's been done.

I do that or at least I did that but I hardly look now except to check groups I belong to, so we end up doing the same thing really. It’s just a symptom of the trail we follow which interferes with our normal life.

 

[Linton]

Yes maybe we really should say OK I’ll go away and let them all have a couple of days each walking in our shoes, they’d soon change their tune!

 

[Linton]

Hi Fishgirl.. If you think you are turning nasty.. .. I don't at all.. quite natural in your position.. I too feel my personally is changing beyond recognition... Due a lot too lack of sleep.. And constant demands of being a carer.. What I fear most is recent odd moments of resentment... Which is horrific to think I would ever feel that.. I only hope its just lack of sleep and does not happen often.. Hopefully the sleep situation will get resolved.. It can be used as torture and I can see why... So here's looking forward to a good few hours tonight... Won't hold my breath... Xxx

 

[White Rose]

Hi everyone, I know Dementia can turn the person with it into a different nasty person, but now my OH illness is turning me into one! Yesterday morning a neighbor called to pick up a parcel I’d taken in for her earlier in the week, she then proceeded to tell me what seemed like every detail of the wonderful holiday she and her husband had just been on, I felt like screaming at her to shut up and didn’t she know what I was going through! Then later in the day I got a text from my cousin showing them lounging by the pool in Mexico with cocktails in hand, I felt so resentful! Both couples are about our age ( early 70s) It’s not so much the holidays I resent as the fact that they can still enjoy life together! And now I feel guilty for being so jealous.

Fishgirl,I don't know how far advanced your husband is but we managed a couple of no-fly cruises in the earlier days which worked quite well as it's a safe environment with medical care if needed, entertainment all day and night and there are other people for you to talk to and of course no cooking or housework. I wouldn't do it now because I find the constant attention my partner requires more or less 24/7 (except when he's sleeping) is just too stressful. There are dementia holidays you can go on e.g Dementia Adventure.
You're bound to feel resentful of your friends with 'normal' relationships because you've lost the person who was maybe your soul mate, who you could have normal conversations and fun with (that's what I find the most difficult). Nobody can really understand the self sacrifice involved in being a full time carer to a dementia sufferer unless they've been there. I absolutely admire anyone who can do it 24/7 365 because I simply can't!! I go to work 3 days a week and organise care for my partner while I'm away (though now it's getting to the stage where he needs more regular care and he gets so bored, so I've been investigating day care at care homes (some are really nice)). I have managed the odd, very rare couple of days away, which also saves my sanity.
Fishgirl you really truly need to organise some time for yourself or it will destroy you - according to statistics in the US, 7 out of 10 spouses over 70 years old who are the sole caregiver to a dementia/Alzheimer’s sufferer will die before them! I have a friend who was full-time carer to her husband, he's since died but it very nearly killed her before him, she was simply completely worn down and worn out. I hope you can find some help - someone mentioned Admiral Nurses to me - they aren't available in all areas.

 

[Di*]

Its so difficult to stay positive when you are tired and drained. There is no let up.

Before this happened to me I had no idea how bad it was to be looking after someone with memory problems, so I can't expect others to understand either. I'm glad for them that they don't know. I'm sure they don't mean to be insensitive, its just that have no understanding. I would have been the same in their situation.

But I'm turning into a grumpy old woman who finds it hard to raise a smile as I battle through the days and challenges

 

[White Rose]

Its so difficult to stay positive when you are tired and drained. There is no let up.

Before this happened to me I had no idea how bad it was to be looking after someone with memory problems, so I can't expect others to understand either. I'm glad for them that they don't know. I'm sure they don't mean to be insensitive, its just that have no understanding. I would have been the same in their situation.

But I'm turning into a grumpy old woman who finds it hard to raise a smile as I battle through the days and challenges

Ditto to that - you read all this stuff about keeping the dementia sufferer happy, you feel like you have to be understanding, you have remember they can't help it, they didn't ask for this horrendous disease - yes we know all that but how can you smile and be cheerful when you're wiping poo off the toilet seat again or you're trying to tell them some them something simple, you've said it 5 times and they don't understand or you think maybe they understand but you know they'll have forgotten it a minute later. Aaaaaarrrrrrrggggg. And it's definitely harder to raise a smile when you are tired.

 

[Grahamstown]

All you say @White Rose is so accurate. It’s the repetitive, irrelevant chat that is so wearing. I try to ignore it and mumble, I can get nasty too with sheer exasperation and then feel terrible. The next minute he has forgotten it all only to repeat the process and so it goes on. My pot of patience runs very low at times but by the next morning it is refilled only to run down again. Over and over again.

 

[Roseleigh]

Agree with all this. Other half has many terrible nights. DDs keep comparing it to looking after toddlers, and its true that there are some similarities, but while toddlers are exhausting and frustrating at times, they also bring joy. There is no joy in caring for someone with dementia.

I was gutted earlier this week, had assessment for him to go for a weeks respite, and the care home manager turned him down. I was shocked. OH became as he described it rather 'agitated' towards end of interview. I'd told him that it wasnt a good day because he had constipation, but he said he would have to interact with other residents and I guess he thought he might get aggressive.

I now have to start a new search on Monday.

 

[Grahamstown]

assessment for him to go for a weeks respite, and the care home manager turned him down

I am very shocked too. As if we don’t have enough to contend with, our sick people have to conform to a standard that is incompatible with some features of the disease. I would be gutted too and I hope you find somewhere that is equipped to look after him safely as well as the other residents.