MagicMum.com

My poor Dad has been in the Nursing home for 6 months and his disease progression has been extremely rapid. He has been falling a lot and is grinding his teeth and has dislodged his crowns, and has generally just slowed down hugely.

Anyway, he had been squirreling food in his mouth for a while - even before he went in and was drooling a bit. But his swallow was definitely getting worse and I had him on the waiting list for speech and lang (SALT) for about 8 months now. 3 weeks ago I got an appointment and Dad was pretty good at it; he was diagnosed as having a grade 5 dysphagia (scale is 1-7, 7 is normal, 1 is pretty grim, can't swallow saliva) and had to have grade 1 drinks/grade A food- slightly thickened/ slightly mashed diet.

Then I got a call on Tuesday, to say that they were very worried about Dad's swallow, and had recalled the SALT and she had diagnosed as having between grade 3 to 2 !!!! and needed totally pureed diet. Hschede has lost loads of weight in the last 3 weeks
I had thought on Sunday that he looked a little thin, but then her has lost so much muscle tone and some days, he can look really crappy, so i didn't take too much notice

We had scheduled a meeting for yesterday anyway, which I was glad about, and then I got a huge shock when I went in that they went to discuss end of life care with me I was upset on Tuesday as I thought how sad that Dad was now on babyfood, but I hadn't thought anything more of it as there are lots of patients in the home that are further down the road than Dad and many on a pureed diet.

I am in shock that in the space of 3 weeks that he had gone down so much. And that we are basically looking at deciding whether we should be withholding treatment

Has anyone had any experience with this? Is it possible that he could rally and be on a pureed diet for a long period of time?
What is the prognosis?

I am in shock. I just can't believe how quickly this happened and that we are looking at this so soon.

Hi cafe culture,
I am so sorry for what you and your dad are going through. I have no experience of the swallowing problem so I'm afraid i'm of no help to you but my dad did have dementia in the last couple of years of his life so I know how hard it can be.
My dad died suddenly and it was a big shock but tbh I think for him it was the best way....living with dementia is difficult for the person....certainly my dad seemed to have lots of fears and much confusion.
I hope that you get answers to all of your questions and wish you the very best, xx

I would actually take him to a dentist first too,he could be having problems from the crowns being dislodged....

_________________
Sometimes, you're making so much noise in your life you don't hear the things that really matter. Like the shattering splinter of hurtful words, the quiet erosion of trust, or the breaking of a heart that makes no sound at all.

Thanks ladies. The dentist did have a look and said there is not a lot he can do. Dad is uncompliant at the best of times. He referred Dad to the Dental Hospital to someone who works with people with disabilities. He is on the waiting list, and I called them again today and asked where he was on the list and explained the situation and if there were any cancellations etc, so hopefully we will get somewhere with that.

I imagine his crowns are at him, and he is grinding all his teeth so I imagine his jaw is sore . SALT said he has muscle rigidity in his jaw. I can imagine the constant teeth grinding is accelrating that sort of muscle clenching.
And he is likely damaging his other teeth- he is missing a lot of teeth at the back since he was younger so he needs the ones he still has!!

But I asked the SALT about this and she said that she had patients with no teeth that could chew better than Dad

What a load of bollox this disease is.

I took my Dad for a walk today so he could feel the sun and see the birds in the trees.

Ah the poor man xxxx

_________________
Sometimes, you're making so much noise in your life you don't hear the things that really matter. Like the shattering splinter of hurtful words, the quiet erosion of trust, or the breaking of a heart that makes no sound at all.

Sorry to hear this. If your dad will take the pureed food he could go on to quite a while yet. However it is important for you to think how ye will wish to manage the disease as it progresses. As the nurse said to me there is no.point only starting to think when the time comes. Eventually they usually stop eating...not nice and something I never realised. They don't suffer though, well any more than they are already. It is the awful course of the disease.

Hi CC, sorry to hear that you are going through all of this.
We went through something very similar with my MIL this year, she went from being able to manage her food quite well to eating puréed food in a matter of weeks. Her Alzheimers escalated very rapidly , we discovered by process of elimination that she was having regular mini strokes and each time it happened she seemed to loose another function, including her swallow.
It really is a crappy disease.

Hi so sorry to hear your dad is failing , I am just wondering did any one ever mention peg feeding to you ,[ its feeding through a valve in the tummy a nutritional balanced prescription diet .It may not be the right thing for your dad but I would try discuss it , also are they giving him ensure or an equivalent high calorie drink if he isn't eating he needs to be supplemented , its a small drink that bulks up the vit , minerals , iron ,and is strawberry or choc or vanilla flavoured as far as I rem it is on medical card on prescriprion..

It is a very hard time for you xxx .

What kind of quality of life has he ? I know its extremely hard, my gran had this disease and when she eventually passed away it was a relief almost and I remember my Mother saying she would not want that disease, its degrading and you become so dependent on strangers basically. Sorry he has gone downhill so fast and having a decision like that to make is horrific. Do you think he would want to be peg fed? What do you think he would say to you if he was fully with it? I am not sure anyone would want life prolonged just so as family don't have to say good bye if they ,are frightened, frustrated and there are no pleasures in life anymore. I understand your shock and sadness completely, in fact even typing this makes me feel desperately sad for you, but maybe the staff in the home know what they are talking about.
Take your time, read up on it, I do know though that my gran, once she got worse, she didn't really get better again, though she did have 'turns' where we thought she would die but didn't.
Best of luck and so sorry you have to deal with this. Have you sibling s for support?

_________________
Star Wars fanatic is now 7 and our dancer is 4!

I would agree with due feb...it's all about quality of life.
I remember the awful shock and how my heart sank when they mentioned end of life care for my dad, he didn't have dementia but cancer so he was sort of aware as to what was happening but chose not to talk about it. It wasn't a surprise as we knew he had cancer and could see how he had declined....but when someone spells it, well it's different..

It's a hard road to start down but I had to keep telling myself that as long as dad was not in pain that was all that mattered. I don't think the palliative care team will consider peg feeding an option but I could be wrong, but as due feb said, is that what he would want? Also, palliative care in Ireland, in my experience is not like in the UK, they don't withhold any treatment that would help maintain his quality of life.

Dad was fed and cared for and continued to get all the medical procedures necessary to keep him comfortable right to the very end.

When you have had time to absorb the news, try and get another meeting with the care team to get some answers to your questions.. I asked them to be frank with me regarding prognosis and how long they thought he had and what treatments he would be getting....fwiw, Dad outlived their prognosis by about 2 months so they don't really know is usually the answer.

Above all, remember, you have done your best for your dad and always had his best interests at heart so don't feel like you have let him down...mind yourself.

We were offered the option of peg feeding for my MIL but it couldn't be done in the nursing home , we would have had to move her to a general hospital through A&E. We took a family/ nursing home carers/ GP decision to keep her in the nursing home where she was comfortable and well cared for and let her go slowly, they put her on a drip for a few hours a day to keep her hydrated and kept on trying her with spoonfuls of small liquid things like yoghurt and ice cream and Ensure. She had absolutely no quality of life, unable to eat , completely dependant, incontinent, not recognising anybody, drooling. We made the decision we knew she would want, as it happened she took a stroke and she died much quicker than we expected in the end , three months ago. It's a bloody awful disease both for the patient and for everybody around them, we had been dealing with it for about five years but I'm still shocked at how things escalated in the last few weeks.

+1 to all due feb has said.
I lost my nan 7wks ago, she had Alzheimers & was in a nursing home.
She lost her swallow & was on a drip for her last 2wks. Peg feeding etc was never option for my nan as she had no quality of life & a trip to hospital etc could have been very distressing for her.
It was very hard watching her at times over her last few months but she passed away very peacefully which we were all very thankful for.
The staff in the nursing home were great & they were a great support .The end of life care was discussed with my mam a year before my nan passed.
Thinking of you!

_________________

FIL passed away 1.5 years ago after suffering from Alzheimers. He lost his swallow reflex, and was on a drip for the last few weeks. The poor man held on for 3 weeks after they told us it was a matter of hours.
We decided not to go down the route of peg feeding, as we knew it wasn't what he would have wanted, and the community hospital he was in was very supportive. We, like the op, got an awful shock when the team wanted to talk to us about pallitive care, even though we could see him deteriorate, we didn't realise we were at that stage.

OP, you can make a plan with the team for end of life care, and you can change it as you go along, if you want to. Nothing is set in concrete. The team checked again with us on a regular basis, and especially when we got to the end and when we said we did not want him resuccitated (sp?). They wanted to sure that we were still sure it was the right decision for us IYKWIM.
It's an awfully tough time and my heart goes out to the OP and to the other girls who are going through this.

_________________
Proud mammy of three beautiful girls



Always keep your words soft and sweet, just in case you have to eat them.