Mum is deteriating roller coaster time

[Niloc]

My dear mum 86 has been in Nursing Home for nearly a year now, dad and I stay with her every day for 6 hours. We see the good days, the bad days , the struggle with feeding her , the confusion everything. Mum still knows me - or at least I think she does .

The roller coaster is running again and I am not sure if this is nearing the end this time.

For the last year mum has been prone to UTI's which have caused Delerium each time. She is on a low daily dose of antibiotic indefinatly, on the understanding that obviously there will come a time when she will become immune . The Dr backs this up each UTI outbreak with a stronger antibiotic for 7 days when needed.

She has fazes of passing out , for low blood pressure and two weeks ago she passed out and fell on her face breaking her nose, getting a black eye and a very swollen upper lip.
I went with her to hospital where she was x rayed and CAT scanned, all very traumatic for her but confirmed nothing was broken, so back to N H.

Since then Mum has eaten very little (she was already loosing weight) she is drinking albeit it very slowly , and is sleeping a lot. She also has osteoarthritis in her back so is also on morohine for pain.

She has about 5 min lucid moments , every hour and I sit with her listening to music hall songs, which she mimes all the correct words to , so she is still alert at times.

I am seeing the Dr again with her tomorrow to get blood test results, but I feel so confused and scared at not knowing what is wrong. Is it shock, is it a UTI, is it kindney failure , or is this the end. Should I force food.

I know her quality of life is very poor, but I don't want to leave any stone unturned , and yet on the on the other hand I don't want to prolong her agony.

Sorry for the rambling but I feel so confused.

I have no brothers or sisters and I am trying to be brave for my Dad who has been married to Mum for62 years and Is already distraught seeing all this . I don't know what to do anymore . This is mums 12 th year of Alzheimers and it's wicked.

I want this to end yet feel guilty - why why

 

[canary]

I am seeing the Dr again with her tomorrow to get blood test results, but I feel so confused and scared at not knowing what is wrong. Is it shock, is it a UTI, is it kindney failure , or is this the end. Should I force food.

Hello Niloc. Im afraid the answer to your question is that its very difficult to predict when the end is coming. I was told 3 separate times that the end was coming for my MIL and each time she rallied!
Im glad the doctor is checking her for other treatable conditions, that may solve the problem.
Dont force feed her - she may choke. Offer her food, but if she wont take it dont force her. Above all NEVER feel guilty. We all have the same thoughts at some stage or another and it is OK to express them here.
xx

 

[Niloc]

Just returned from Mum today. Seen Dr today, she has said nothing is showing in blood tests , kidney and liver functions not infected in any way. Still struggling to get water sample but she has put her on a course of antibiotics anyway.

I asked if we are at end of life stage she things not yet, but obviously confirmed that things can change. Will put her in energy drinks and see her again next week. She explained that the fall has caused her a big trauma and this maybe the impact showing in the way she is withdrawing and this is how she may now be.


Thank you for your replies , they do help me take a step back and reflect. It is so hard sometimes because I feel so much for what Mum is going through with this awful diseases plus I can't heal Dads broken heart.

 

[Niloc]

Three weeks on seen the Dr each week and really am getting so stressed , emotional and guilty.

The Dr said two weeks ago Mum was deteriating , loss of weight, struggling to talk, (although mimes to songs still) , asleep a lot of the time..

I asked the Dr as she has lost so much weight could the morphine (pain relief) for her osteoarthritis pain in her back be too strong for her which is why she is so sleepy, and being so sleepy is restricting her eating.

The Dr said maybe although mum is on a minimum dose of Morphine but with a cocktail of Mirtazipin, and Aricept it may be too strong. So it was agreed that she would switch the morphine for Kokodamol .

For two days there was no change, but I guess as the morphine started to go out of her system, she did start to "reappear". Food intake was a bit better . I feed mum and although it was taking 1hr 30min she was nearly finishing her liquidised food. she was also having 2 Ensures a day which she drank .

I thought naively things were getting on an even keel, not brilliant but at least more responsive. however this week we are going backwards again. The pain relief is not strong enough and she is very uncomfortable with her back pain again. The nurse as agreed by the Dr has increased huge kokodomol which today has seen mum asleep for 5hr awoke for lunch, she took 6 small spoons if food and that was it.


I am there every day with my Dad , all day we sit and hold her hand. I am trying to be brave as Dad is distraught at the thought of loosing his wife of 62 years is getting too much for him. I don't know what to say to him.

I guess if the Dr says to put her back on morphine she will be free of pain, but then she will be so tired she will not eat, then fluid will be an issue and then the inevitable end .

How do I explain this to my Dad. In my hear of hearts I want my mum free of pain , but feel I am her executioner. I am so confused on what to do next. I keep asking myself have I missed something, is there nothing else we can do.

I know it is the complications in the end to the body that Alzheimers brings , but if I look back and think it was only pain that got mum I will never forgive myself.

I am sorry for the rant and unsophisticated words but I feel desperate

 

[jorgieporgie]

Hi niloc,
Sorry for your pain, it is a terrible disease and watching loved ones go through it is unbearable. My mum is 86 and has vascular dementia. She also gets UTI's frequently which cause all sorts of misery for both of us. I thought she was at end of life a couple of weeks ago she stopped eating lost weight and was really weak, but bounced back again.
I know how your feeling and don't feel guilty because you want your Mums pain to end, you feel this out of love for her. I pray every night when my Mum as been suffering that she will soon be free of this nightmare, it is normal for us to feel like this.
It is sad for your Dad after been with her for so many years, but at least he has a lot of memories to keep. Keep strong and big hugs xxxx