mum`s not well

[jakky]

My dad is the main carer, and never realised, but he is stronger than kryptonite. We are in a very difficult period of this illness, where mum wanders,shuffles around the downstairs rooms. Mum would occasionally rest for short periods of time, (5- 10 mins), and stints of sleep, (about 1-2 hrs) and back on her unsteady weary legs. My dad is struggling too much and I fear the worst for him as he idolises her. Mum had a fall 3 weeks ago, and injured her back. This appears to have taken most of the strength from her as she looks mal-nourished and does not eat much. Her hygiene habits are restricted because of her limits in movement. We are thinking that sciatica may be a cause, unfortunately mums speech is, most of the time, too mixed up for us to understand, and struggles to tell us where it hurts. We are awaiting the outcome of x-rays which were took a week ago, and that was not easy either, before the doctor decides what to do next. my concerns are my dad, he looks absolutely exhausted for his efforts and dedication, but needs help soon.

I know we are not on our own and thanks for listening....

jakky

 

[Amy]

Hiya Jakky

It's also my mum who has the disease, and until recently dad was caring for her at home. Up until last October dad had resisted respite care - he didn't need it.
Just before Christmas, the muscles in his back went into spasm, due to the lifting that he had to do. Both he and his neighbour and myself thought it could be some sort of heart attack, so an ambulance was called. The paramedics put him on a monitor and he was OK. What I am getting round to saying is that it made him realise that he could not manage any longer. I have found with much of mum's illness, the problem has been waiting for dad to be prepared to accept help - there are day care centres, respite care, social services, Occupational therapists. I feel for you; it is so painful watching your mum becoming iller, and watching your dad wear himself into the ground. In the end I justed started phoning the Care co-ordinator when I felt that dad needed more support. (Both he and mum were ending up on the floor.) It was a case of saying to dad, I love you both, therefore we have to get more help. The time has come to move on.

Mum is now in a Nursing Home full time. Despite my own distress at this step having to be taken, I (together with my brother) took responsibility for the decision, insisting to dad that he had done all that he could. I think that has helped dad, because he doesn't see it as his failure. In no way has he failed my mum. Like your dad he idolises her; mum is incontinent, unable to speak or feed herself, unable to stand independently- dad was doing everything.

Encourage your dad to accept help. Others on this site will be better able than I am to tell you whose help you might enlist.

Best wishes
Amy

 

[Brucie]

Hi Jakky
sorry to hear your story.

I've been where your Dad is, and still am to a degree - the caring can never stop.

I'd have run myself into the ground, but circumstances took over - Jan deteriorated [long story] such that I could not care for her any longer at home.

Two things that may be important for your Dad to know:

1. he will need to appreciate at some time that it will be best for your Mum to be cared for by others - for her sake. He sounds as if he might respond to that - it is difficult to admit, even to yourself, that you have run out of steam. He will have her interests and safety in mind, and while, at first, he may have believed his care was the only care good enough for his wife, he probably knows by now that he can't do it forever. It is just so difficult to admit that.

2. there are care homes that can do a magnificent job, 24 hours a day, leaving him to be at his best and freshest when he visits her - which could be more than once a day if he wanted. There are also home care packages that can be put in place - I have no experience of these, but others on TP may be able to advise.

He does need support. What we do is bury ourselves in the caring, to blot out the huge grief, fear, anger, and uncertainty for the future.

 

[jakky]

thanks Amy

Does seem like familiar circumstances, which are very distressing all round. I am fairly confident that dad has realised he`s done as much as is humanly possible. He has had a natural ability to nurse and care for mum, which has been tremendous. I am so proud of dad and love him loads....thanks dad!!
I shared 2 choccy biscuits with mum yesterday, then encouraged mum to wash hands in the sink to remove all the smudgy, melted chocolate. We struggled to the bathroom and then we ran some water, put some soap on our hands and splashed the water a little, then we dryed hands and I gently rubbed the inside of her ear and she laughed loudly. Brilliant..

 

[jakky]

Hi Jakky


Two things that may be important for your Dad to know:

1. he will need to appreciate at some time that it will be best for your Mum to be cared for by others - for her sake. He sounds as if he might respond to that - it is difficult to admit, even to yourself, that you have run out of steam. He will have her interests and safety in mind, and while, at first, he may have believed his care was the only care good enough for his wife, he probably knows by now that he can't do it forever. It is just so difficult to admit that.

2. there are care homes that can do a magnificent job, 24 hours a day, leaving him to be at his best and freshest when he visits her - which could be more than once a day if he wanted. There are also home care packages that can be put in place - I have no experience of these, but others on TP may be able to advise.

He does need support. What we do is bury ourselves in the caring, to blot out the huge grief, fear, anger, and uncertainty for the future.

many thanks Brucie
I am sure dad will listen to these encouraging words and go in the positive direction, and these appear to be the right words....
thanks again
jakky

 

[jakky]

hiya Brucie
Well, what can I say....gobsmacked!!, mum was on the settee having 40 winks, I said to dad three words, "for mums sake"!! I noticed a huge sigh of reilief as if he`d acknowledged that we support his efforts fully and is prepared to make himself get refreshed to keep on giving mum total TLC. he did reply with "let`s get mum well, eh". "yeah, we`ll do our best, eh"......
thanks again for listening
jakky

 

[Brucie]

You just made my day!

So glad it was effective.

 

[jakky]

ditto Brucie,
you made dads and mine when I mentioned the three words
"for mums sake". Dad and me will keep battling on, together with mum, and keep up with TP everyday now we know where the site is.
Just a bit of background info as I am new to site

mum is 67, and dad is 70,
nan, (mums mum) is 100, mum hasn`t been able to visit nan since mums accident and nan also has slight AD.

we did manage to help mum drink 4 cups o tea, and drink a complan yesterday, which we think is an achievement given the story of the last 2 weeks.
and she laughed "cup o tea".

 

[jakky]

Hi,
have had a distressing weekend with being up most nights and days running on empty. Mums not eating and drinking very well but has the strength of an ox.
Dad called CPN on monday as an emergency assessment while mums rapid deterioration continues. Something to be prepared for and actually being told are very different issues. The guy , himself, truly professional and sensitive, which was relaxing and comforting, then began with " you know your mums dying, she is in terminal stage now and this is her brain shutting down". Dad didnt let on and I suppose I didnt really, but emotion can`t hide and it hit me later after I analysed what was said.
However, I`m glad I have been told what is happening to mum now and we can go forward with the help mum, and dad needs.

thanks for listening
jakky

 

[Lynne]

Jacky,
I'm so sorry you've been hit with such a bombshell, and apparently in a particularly insensitive way.
As you say, you "knew" what was likely to come eventually, but being smacked in the face with it is a different kettle of fish.
Don't be afraid to cry on your Dad's shoulder; it might 'allow' him to lean on yours and let HIS feelings vent a bit.
Best wishes

 

[connie]

Jacky love, I echo Lynne's post. It might be good for you and Dad to both let go over this, instead of trying to prop each other up and skirt around the issue.

Mum needs you both to be there for her, but you two need each other. Look after yourselves, Connie

 

[Amy]

Hiya Jakky,

So sorry you've had an awful weekend. Have you read the thread 'dementia- final stages.' I'm just wondering what your CPN meant by "terminal stage".

Best wishes
Amy

 

[Sheila]

Dear Jakky, as you say, now you can go forward. It is a hard thing to hear, but not something we can avoid. It will give you and your Dad the chance to make sure you do all you can to make her passing a peaceful one with much love and happiness around her. Plenty of hugs and things she enjoys, special tunes she likes and smells and flowers, all these things will show your love and will mean much to you all both now and later too. No one says it will be easy, the more you love them, the more it hurts to lose them. We are here for you if you need us. Thinking of you, big hug, love She. XX

 

[Norman]

Hi Jakky
what a blow and what a way to be told.
Dad's need a lot of support you know (Dad talking) and big boys do cry.
Jakky love your Dad ,put your arms around him,cuddle each other and let it all come out
It's wonderful what mutual support like this can give,I know from personal experience.
Thinking of you both and wishing yiu well
Norman

 

[jakky]

hi Norman, Sheila and Amy
Just a bit of a bolt,
but hey... minor compared to what mums going through. Dad and I do talk alot about whats happening, although dad doesnt express his feelings, emotions.
Two of mums sisters visited yesterday and chatted together amongst themselves.
Not sure if they understood anything but there were a few chuckles going on between them. I think mum had a pretty ok day.
Thank you Sheila for your warm message. It really is comforting to know that people on TP support you and understand how others are suffering in the same way.
Thank you Amy for the thread pointer, I did go straight there and printed off some encouraging info for dad and I.
I think Sheila has put into words what is meant by "terminal stage"
Looking forward to spending some quality time with mum again this weekend, give dad a bit of a breather anyway

thanks for listening
jakky

 

[jakky]

hi
Just to let you know mum had a good weekend, unfortunately dad, sis and I did not. We were asked on friday to assist with assessment to start the ball rolling for procedures to enter mum into an EMI nursing home. (possibly 2 weeks - 2 months before a place)All went well and an assessment carried out. The CPN phoned friday pm to say they were calling to see us again on monday to sign some forms. Monday 12.00, CPN arrived, risk assessments complete, and there is a vacancy within 10miles travelling. Dad visited the home with sis and yesterday the ambulance turned up at 9.00am and off mum went.( although, not without the stubborness). We stayed with mum for a few hours and will be able to visit soon, after a settling in period. Having been pretty upset by whats gone and going on, a sense, feeling of relief has occurred knowing that mum is in great hands now and being cared for by people who are better equipped to care for mum. We are able to visit freely,within reason, and look forward to seeing her smiling and laughing again.
This being the saddest part of the journey so far........
thanks for listening....
jakky

 

[Amy]

Hiya Jakky,

I understand the conflicting feelings. Relief that mum is in a safe place; that dad is under less pressure, and sadness that life has brought you to this place.
Thinking of you.
Amy

 

[jakky]

yeah...thanks Amy,
I`ll be thinking of you also, while we all go through these tough times.
However we need to be strong, move forward and keep going "for mums sake" as Brucie kindly phrased.
take care
thanks for listening...
jakky

 

[nikita]

just had some similliar news off the nurse at grans home she is very poorly they said and her body had deteriated rapidly in the last 3days, she has a chest infection and her lungs are filling with fluid i dont know if they are trying to prepare us for the worst or not she is 95 and has had a good innings.

 

[Sheila]

Hi all, Jakky and Nikita, my thoughts are with you, its a hard time for you right now. The love you share with your family and close ones is something that dementia cannot completely destroy, because this love includes so many memories. If you can share these memories with the sufferer, in my mind, you cheat the illness, you win! Even if the moments are fleeting, they are there and it does happen. Be kind to yourselves, with much love, She. XX