How can you introduce outside help?

[melly]

Hi all - Sorry about this long message!

Quite a bit of time has passed since I last wrote on here and things have changed so much. My dear mum is a lot worse now and is unable to do anything at all for herself. My dad washes and dresses her, has to take her to the toilet, help her to walk and eat...literally everything. The cruelest thing is that she is still very aware though, which I don't understand. I thought by the time mum reached 'this stage' that at least we would be comforted by the fact that she would have little or no awareness. Instead, she gets really upset because she seems to know what is happening and even tries to apologise (even though her speech is quite limited) and it breaks my heart.

My dad is an angel and has done his very best to 'shield' mum from the illness but this is really wearing him down and I am terrified that he will shortly have some kind of breakdown. My sister and I do all we can to help but the main care is down to dad and as everyone in that position is aware, it is so tiring.

Mum doesn't leave my dads side and follows him around the house 24/7. He will even wake in the night to go to the loo, leaving mum fast asleep in the bed and within a minute she wakes up and gets very distressed worrying where he is. They will be in the lounge of an evening and if dad pops out to the kitchen, mum starts to panic and wonders around looking for him. He says he feels completely trapped in his own home and I don't know what on earth to do.

I have talked to dad about introducing outside help to give him a little break but he feels he is letting mum down and on top of that, because of mums awareness, we know she just wont accept a 'random' person and we don't want her to feel as though she is getting any worse. She is only happy with my dad, me or my sister.

Has anyone else had this problem and if so, how do you overcome it. How can we introduce help without compromising mum's dignity? Either that or do we just accept that it is down to us and that mum's happiness is the priority bearing in mind the limited life she has left. I really appreciate your guidance x

 

[Canadian Joanne]

Hi Melly,
I haven't experienced your exact situation but what about having the carer come in and the first few times just be "social" with your mother. That way your mother could perhaps get used to the person and it would ease the situation.

 

[Helen33]

Hello Melly,

I could identify somewhat because Alan didn't want anyone around but me. I knew that eventually help would be needed and so I introduced people into the home just as a presence. They had no specific role other than to be present so that Alan could get used to other people being around. This then led to other things and he is now quite accustomed to the comings and goings of helpers. At the beginning I was always present too and gradually was able to remove myself leaving Alan with the other person.

I do wish you luck and hope that you can achieve it

Love

 

[welshchick1968]

Hi, I can empathise with what you are goig through. Your story is almost identical to mine. It took a lot of persuading for mum to have a carer calling once a day to wash and dress her, as this was the time of day dad found hardest. Now mum loves her "friends" thst come in and help her and I wish we had pushed the issue earlier with her.

We are now looking at respite care for mum as she has rapidly declined over the last 3 months or so - even feeding herself is getting more problematic.The guilt in that is awful. I always promised mum that i would look after her, no matter what. The consultant said this is looking after her, but I still feel that i am failing her.

 

[melly]

Thank you

Thank you for your replies!

welshchick1968 - What you have said is really encouraging and I have passed it on to my dad. It is nice to know that somebody is experiencing the same things as us and yet have managed to work a way around it. It's funny what you say about your mum's decline as my mum seems to have got a lot worse over the last three months. I have been able to cope by knowing that she was at least happy but that seems to have gone and now I just hurt for her all the time. It seems to go along steadily for some time and will then all of a sudden take a big dip and you are dealing with something new all over again. So so hard x

 

[BeckyJan]

Hello Melly:

When I could no longer leave my husband alone, I introduced a 'cleaner' for a few hours - she did clean but mainly kept an eye on him, made a drink etc. whilst I had a few hours doing whatever out of the home.

This led to a formal 'sitter' who knew his objections and waited for him to call her for a chat. The morning personal care was introduced after a period in hospital by which time he was used to other people assisting him.

I do hope you find some solution soon.
Love

 

[cov_girl]

Hi Melly,

I completely understand the want to give your dad a rest, the situations with my gran is almost identicle. She too follows my gramp around the house and needs him by her side 24/7, often getting upset when she doenst know where he is. And, just like your mum, is still very aware of her situation. I think this makes it even more heartbreaking as i always thought the disease would at least offer her a shelter (ignorance is bliss!)

I don't currently know if my gramp has help at the moment, but I do know that they got in contact with a charity a while back (i can't for the life of me remember the name now!) and a lovely woman came by the house for 2 hours a week to just be there for gran, they chat, they have walks in the garden, they watch tv; and generally just lets my gramp have a little time to rest. (When reminded) Gran often speaks of her visits and how nice she is. It might be worth finding out if this is available in your area?

Other than this I dont really have any other help to your situation, although we have found that asking family friends over for 'a cuppa' helps gramp, as eventhough he isnt having 'alone time' he can have a conversation with other people and often they suggest he can go and walk the dog while gran and the others 'wash up'.

Good Luck
x

 

[mip-mop]

Hi Melly.
I can really understand your situaion. If you look at my thread 'Dad won't listen', you will see some of the amazing advice i have been given. Unfortunately my dad still refuses outside help and relies on me to care for mum with him, which is hard work at times.
I know i have to accept that dad is not ready to have help with mum, but like you i can slowly see him draining away as he is locked inside the house all day with mum wandering around after him. He will often rant and rave at me for the first 15mins or so when i get there, but i have learnt to bite my lip as he has no-one to talk to in the day. Mum stopped talking a good 8months ago now, so dads days are very quiet.
I wish i could offer some advice to help, but everyone is different and we have to accept that is how they are coping themselves. The fantastic people on TP have taught me to take a big breath, step back and just carry on doing what i'm doing.
Best wishes to you and your family.

 

[Lauren]

Hi

Hi Melly!!
When i read your thread it was like i could have written it myself! Im 22 and my Mum is in the exact situation as yours! She is constantly by my dads side and as you say gets very panicey even if me or my brothers are around!
Im at uni in my 3rd year away from home so its been a break for me! I move back in 7 months!
We advertised for outside help in the newspaper! and managed to find the most amazing carers they rotate every 2 weeks! (they care for another man aswell)
They come for 5 hours a day so that gives my dad a break even if he does have to go to work!
I feel sometimes that my dad needs a major break from it all but he loves her to bits and she does the same which she reminds us every day lol! He is exhausted but this care is such a great help!
I do hope this insires you to get help also!
If you ever need to chat just message me!
Regards Laurenx

 

[Clive]

Hi

My situation was slightly different in that dad had died, however mum was adamant that she did not want any help even though she had been diagnosed with AD and her memory had got bad. (Which meant I was helping more and more)

I decided introducing Carers would have to be planned almost like a military operation.

I found an Agency and explained the situation. They were prepared to start by sending a person just to sit with mum for an hour, every day or so. They had a person who was good at sitting and talking.

It was arranged that the person would come as a FRIEND OF MINE at a time when I was at mum’s house.

I ASKED mum if it was ok for a friend of mine to pop in, and PLEASE could mum make us a cup of tea, and could MUM AND I go out and buy a cake so my friend thought WE were polite and not poverty stricken.

The lady arrived at the arranged time in PLAIN CLOTHS with NO BADGE. She said to mum that she had once lived at the other end of our street and had seen mum passing once or twice a few years before.

I helped mum make a pot of tea and I opened and cut the cake (for hygiene reasons).

I chatted to the Carer, and we both included mum in the conversation letting it go wherever it went.

We did the same for the next couple of visits until I judged it was time to let it run on its own. I made a statement like “you ladies don’t want a MAN messing up you chin wag… I’m going in the garden out of the way".

After that mum was quite happy for the Carer to call and we slowly built up to the full Care package including getting out of bed and washing etc.

You will find the best way for your circumstances but you may need to be a little creative and remember that little white lies may be necessary. Your dad would need to make sure he was not thought to be connected to the Carer.

Best wishes

Clive

 

[melly]

Thank you

Thank you again to everyone who has written back with advice. It is really helpful and I am looking forward to showing dad. You couldn't find a better support network than TP. Talking to people that are living with this everyday and who can help each other in so many different ways. So glad I'm a part of it!! x