terminal stage dementia

[debby13]

Poor you, I am so sorry this must be an awful time for you and your family. My Dad has dementia not at the end stage (I think but dont know) yet, but my friend's dad who had dementia her nursing home actually recommended getting in the Macmillan Nurses for the end period and she said that people always think that they are cancer nurses only but that they were absolutely fantastic with her Dad and gave her and her Mum some much support. Plus they knew that her Dad was being looked after and was not suffering at all. I think the first thing they did was massively up his pain relief levels and I think the NH liked the fact that they are experts etc.

Anyway just a thought and love hugs to you.

xx Debbie

 

[strawberrywhip]

Dying peacefully

Jo
I am so sorry to hear of your distress.
There has been so much research done: no one should die in pain. As has been said there are palliative nurses, and McMillan nurses out there who can ensure proper pain relief is given, and other medication to keep people comfortable.
After full consultation with the multi-diciplinary team and families in some places the Liverpool Pathway is implemented for dying patients. This is a wonderful tool whereby once the decision is made that no further intervention is appropriate, this care plan is generated which purely looks at symptom control and the patients comfort. Notes are suspended and all care is documented on this pathway. Families can see what is being done and it often helps to identify when this point has been reached, so that frenetic acitivy stops and the patients comfort is paramount.
I do feel sorry for families when patients are rushed into hospital at the very end stages of their disease to have often painful procedures done : blood tests etc etc, to no avail, when often the most appropriate place for them to end their days is with privacy and dignity in their homes or nursing homes with family around them.

 

[Lonestray]

End stage

Reading your posts makes me understand why no one wants to visit us as I'm referred to as a 'one off'. The end or final stage for my wife came about 5 years ago. A Mcmillan nurse was sent to our house, my wife was on morphine for her pain. She left her card,I sent her away saying I'd care for her myself. The hospital, her GP and the entry in her notes (I still retain) stated she was dying. In fact, she was not expected to survive the night and I told her it was OK to let go, as I held her hand. That was over four years ago!
She's had three seizures/fits and had to be rushed to A&E. After a lot of tests she was diagnosed as having epilepsy, wrong again as she hasn't had another seizure since early Feb. That was the last time we saw a doctor. A nurse visited twice, but it was a different one from last year, first for my wife's flu jab, second visit for my jab!
About three weeks ago two girls appeared at our front door. One said she was a CPN, the other a SW, what did they want? To arrange a package of care, in the event of me having an accident!
This after 4yrs and eight months caring alone, I found it so funny. I filled out the form stating, that before anyone attends to my wife, they will require instructions from me, as to how to do so. By now, I've got use to being ignored as I've not heard anything back, having returned the forms in the 1st class stamped envelope. With any luck, this end stage will go on for many years yet. So far the only down side is she's nearing 9 stone which make it harded to lift her in and out of the car, as I'm only 10stone 5lbs. Still it's better than when she was under six stone.
She may be rigid all over and unable to speak but I'm more than happy to still have her and to be a one off. Could it be that the Psychologist ( she left the NHS) who use to deal with my wife six years ago,when I've been in touch said "No one wants to know because you proved them all wrong?"
I wish you the peace of mind and contentment which I found in caregiving. Padraig

 

[rummy]

Hi zonk,
I am so sorry for your situation and understand as I am going through this stage also. Mom is on hospice and declining rapidly. Every time my Mom gets a virus or runs a temperature the NH ask me if they can give her antibiotics and I have to tell them, again, NOTHING CURATIVE. It is so hard to make that choice once much less over and over again. Only comfort measures are being taken now and just this last month I've seen something different, she has lost her joy and is tired. It is me that is having a difficult time letting go, I know she deserves to leave this illness and this hell and be whole again. At this point I am just praying for God to be merciful and to help me to let go.
This process is so lonely, just know there are others that truely know how you feel.
Debbie

 

[Margarita]

sorry what is happing with your mother do feel for you , as when my unite was put on morphine after a stroke , I felt like a pilot light that just could not switch off, not even in my dreams as I had nightmares .

hope you do share it all with your work mates , when your ready xx

 

[BeckyJan]

Just to add my sympathies for all you are going through. I cannot add much to all other posts but just want you to know I am thinking about you - you are doing a wonderful job. Take care Jan

 

[zonkjonk]

Hi all, mum is still hanging on
It really is the long goodbye
last report: care plan unchanged, skin condition good, no more anti depressives, anti psychotics, anti biotics,just pain relief.

 

[BeckyJan]

Cannot say much but how sorry I am - as you say it is 'a long goodbye'.
Try to take care of yourself with all this going on.
Jan

 

[Grannie G]

Take care Jo. I`m glad your mother is peaceful. That`s all anyone can hope for.
Love xx

 

[BeverleyY]

Feel really sad reading all the posts here.

My Mum died 3 weeks ago, renal failure/COPD and then pneumonia tipped her over the edge.

I replay in my mind all the time, was I right to say don't ventilate I know that is what the Doctors recommended - they said if they ventilated, it would be extremely hard to ever get her off it.

Then I think - if we had, and she was laying there on a ventilator, would she have thanked me? No, she wouldn't.

It was a very tough choice - especially the last day when they told us they were removing her BiPap mask, and she would only have hours. They gave her morphine, but all her children/grandchildren were there, as was my Dad.

I really do feel for you, because it's hard when you have to make that awful choice. It's heartbreaking.

Beverley

 

[Helena]

You also have my immense sympathy however you MUST think what would your Mother have said/wanted if when she was well if such a situation was ever discussed

Theres no way on earth my Mother would have wanted the hell of her last 5 weeks and they would have been entirely unnesecary if the all of the medics over the course of 5 yrs had done their job correctly and diagnosed correctly or acted upon our phone calls

 

[wendyg70]

My sympathies to you Jo, ive read all the postings and its so sad, I can only imagine what you must be going through. Be strong x

There is one question I would like to ask you all. Many of you talk about sufferers being on Morphine in the final stages to control pain. My dad has dementia, probably somewhere in the middle stages. I know that what he has is a terminal illness but it hadnt occured to me that he would/could be in pain in the final stages. Is this a result of dementia or are they in pain for another related illness?

Sorry for being naive, and I hope this isnt the wrong place/time to be asking.

Love to you all Wendy x

 

[nicetotalk]

Hi Jo

So sorry you are haveing to go through this ive been there nearly 2 years im march with my mum being only 62 years old. One can not emagin until you have been through what you and i and many others on here are going through and have been through.

just sending my love
kathyx

 

[Mameeskye]

Hi Jo

(((((((((((((((hugs))))))))))))))))

My mum is doing the same. Still hanging on there..just waiting...

Thoughts for you

Mameeskye