Exhaustion=Tears

[mamarosa]

Hi all, this is my first time posting on the internet but I didn't really know what else to do.

I am a single mum of 2, I work and I have been helping look after my Nan who was diagnosed with alzheimers in September 2011. I first noticed changes in her 18 months prior to this but it was a stuggle to get help. Since the diagnosis I have been going to give her medication twice a day and doing other jobs for her that she can't or won't do. 5 Weeks ago my Nan fell over outside the shops and broke her hip. Before this, although there were periods of difficulty, Nan was still functioning pretty well. Since then, things seem to be going down hill rapidly and I'm struggling to keep up and manage these changes.

Since September I had pretty much full responsibilty for Nan with my Mum visiting her once a week. My Mum's attitude towards the illness has been testing and emotionally charged for me. I often feel 'in the middle' and angry at the responses given to Nan when she forgets things. When Nan was discharged from the hospital last week a package of care was put in place. I didn't think I would but I felt redundant not having to do the tablets but I still visit at least twice a day.

Following the admission to hospital, Nan has now become incontinent. I gather it is variable as she sometime goes to the toilet. I do not understand why this has happened? She also doesn't want to eat and this is really worrying me. The appetite has improved slightly since being home but she will still go days without anything. Her ankles are swollen and dry, there are pressure sores on her bottom and she often refuses to get out of bed. I know she is depressed but I wish there was something I could do to make her feel better.

The time I spend there has greatly increased and the jobs are more. My Mum takes regular days off from visiting but I never can. To be honest I do miss being able to go out and plan things but I worry so much about her I would probably feel guilty if I didn't go to see her.

I have been very tired and today was already not a very good day but when I went to nan's it got a bit worse. This morning, there had been a large soiling accident in the hallway and in the living room. I spent nearly 2 hours trying to do something with the stains but I just seem to have made it worse! According to the carers they think she may have been trying to sort out her pad before they got there when the accident happened. I found tonight very difficult. Trying to keep her upbeat while my heart was aching. I love my Nan so much and find it hard seeing her this way

[snowie123]

I read your story with sadness and compassion for you and your Nan. It is the worse thing feeling inadequate and in honsesty you have done as much as any of us in the same position and believe me there any many many of us.

My Mum was diagnosed a few years ago and I went through the same thing with her. I tried really hard to keep her at home with day carers and eventually she had to go in to Nursing Care.

She too became difficult to care for for and I felt huge guilt at not being able to help her through such a difficult time and she developed all the decline you mention, tablets in abundance , she wandered and was so scared if she left the house , eventually became housebound and severely incontinent and I too had awful messes to dael with.

Sadly this is all part of this horrible disease and even now I have days and nights when i feel overwhelming guilt about it all.

Reading the stories that people write on here makes us aware that we all have gone through the pain of loved ones and we understand exactly how you are feeling.

Be sure theres always someone on here to talk to when its gets tough .


Snowie.

[LadyA]

You and your nan need more help. Easier said than done, I know.

As regards the decline since her hospital stay, I'm afraid that's just sometimes how it is. But on the other hand, it is a fact that sometimes people become incontinent in hospital because they aren't taken to the toilet when they need to go - staff shortage etc. And it's handier for staff sometimes to just pad elderly people, then they don't have to worry so much if they can't take them to the loo often enough. And then the patient gets to realise that it doesn't matter if they have an "accident" because they have a pad on, so they relax a bit about it - and before you know it, they are incontinent. There is a term for this type of "learned" incontinence which I learned in classes some years ago, but I've forgotten it! Sometimes after the person is home, persistence can bring them back to toilet control again, but sometimes (if they have dementia) it's a permanent or sporadic thing.

Can you see if you can get any extra hours of help? Are there others in the family who could chip in?

[mamarosa]

Thanks Snowie. I really feel I need the support at the moment.

In answer to LadyA's questions, the carers go in 4 times a day and stay between 15-30mins each time. My Mum and uncle seem quite concerned about cost so don't think they will be lookng to increase. My brother won't help cause he lives 25mins away and I don't think he can handle it. He rarely visits and never calls her. She often forgets who he is in the family. My Mum won't do anymore cause she can't cope with it. She is visiting a bit more now but constantly moans about it. Its such a struggle in more ways than one.

Thanks for your replies x

[Jackcat]

You need to get your Nan a Social Worker, who will help you access benefits (Attendants Allowance for example) for her, also free supply of incontinence pads, and maybe link you up with local psychogeriatric services and dementia support groups. Also, I don't think you have to pay for care at home after a stay in hospital, and even my Mum got 6 weeks worth of enablement free of charge, three visits a day, and she is what they term fully self-funding because she owns her home. I know it can be difficult asking "the system" for help but you will need it, and it might demonstrate to the rest of your family that you can't manage it on your own, and that a t of support will be needed for your Nan, possibly for quite a long time. Just ring your local council and ask to speak to a social worker on the elderly care team and they will take it from there. Best of luck and let us know how you get on, come back here regularly, it is a great place x