Can anyone help with advice

[eagle]

Can anyone help me with advice as i don't know where to turn. My mother has we think lewey body disease as no one has been able to give us a definete diagnosis, she is currently 71. This has been progressing for the past 7 years. She has been in a nursing home for the past 2 years following a fall were she broke her hip. At this time her mental condition was deteriating quickly and the dementia was becoming very obvious. Since being in the nursing home she has been unable to leave her bed is totally incapable of doing anything for herself and is fed via a tube into her stomach. She can sip very small amounts of water when given to her by the carers although most of her fluid goes via her feeding tube.

She no longer recongnises us and only mumbles when she is speaking to her halucinations, so there is very little communication with her. The majority of the time she is asleep when we visit but we are unable to wake her We feel as if we have been abandoned by the medical profession. Her neurologist last saw her 18 months ago, as we cannot move her out of the nursing home, he paid one visit to the home and then said there was no more he could do. The GP visits if she picks up an infection but apart from that there is no communication or medical intervention

The nursing home look after her well but obviously there is no quality of life for her now. The advice i am looking for and i know this is something that no one can tell me for sure, does any one have any experience of a similar situation and how long it is likely to last. Does anyone know where we can go for advice on this, who we could speak to is it the GP?

Any advice would be very gratefully received. Thank you

 

[Amy]

Hiya eagle,
Welcome to TP, though I am sorry that you are in such a sad position.
Have you spoken to the manager at the NH - can they offer any advice? After that I would approach the GP?
The problem is that your mum is receiving nourishment and fluids via the feeding tube, and being nursed properly to prevent bed sores, and no doubt being given antibiotics if she gets a UDT or chest infection. So all actions are being taken to prolong life. I think that as a family you need to sit down and talk with the GP about what you want for mum and what is best for her.
Love Helen

 

[chip]

My mum was like that as well. We were called in a few times being told she hasn't got long. This though went on for 2years. No-one knows how long they have got as with this everyone is different. I know its not nice to see and watch them like this. I have known 6 people with Dementia of all different ages and types all were different lasting at different stages from being diagnoised from 9months to 13years. Two weren't even in the nursing home for a year, another was still at home,another was in care for 5years, and my mum was in care for 7years
I'm hope this helps (but i no its not much help) Some battle on and others just give in.
Now my husband is the 7th person he is different again and just went through a bad week of changes in him he is coming up to 5years with early onset dementia.
I wish they could come up with a cure.

 

[jenniferpa]

This is just my personal opinion, and I really don't want to offend anyone but..

I think, if I was in your position, I would think long and hard about what you want for your mother. At 71, barring other health issues, and the Lewy body disease (about which I know nothing) she could conceivably be in this situation for many years. It's a very hard thing to think about, but I (repeat I) would be asking the GP such things as if it is wise or kind to give antibiotics in the event of an infection. For me, quality of life rather than quantity would be the most important issue. Obviously peoples views on this issue vary a lot, so this may not accord with your own ethical views.

Jennifer

 

[perfectpatience]

Hi Eagle. My mum is laying very frail in hospital at the moment. If you read my posts she has gone downhill rapidly this last year....and after falling...is now in hospital. She has dementia.....and now the hospital have told me they wont be giving her antibiotics or the 'drip' if she was to get dehydrated or an infection. When my dad heard this he got very angry and said "So they are just going to let her die then?" I think personally it would be best for my mum to pass away than to be kept alive with drips and feeding tubes. Her brain is no longer with us...also as her quality of life (like your mums) is never going to improve.......I would think long and hard about letting them keep your mum alive. I know it is so hard...I mean how do you make a decision like that? Please do as Iam doing and think of your mum....what is kinder for her. That is the right thing to do...but not the easiest by far. Please let us know what you decide to do. God bless.. Love PP xx

 

[Lonestray]

No advice

Hi Eagle, Yes, I've been there. My wife stopped eating and gave up, landed up with bed sores and generalized rigidity set in, and as is the pratice was given medication for a number of things. I had to ask what the medication was for. It reached the stage where I was spending all day at the NH trying to give her what I believed to be proper care. Seeing her bed ridden I couldn't take it any more so took her home. Got rid of all medication which resulted in the shakes. I had a number of scares, life or death, at least four times I was advised she would not live. Now we're pushing up to the fourth Christmas to geather. I'll always remember our first Christmas in 2003. I was feeling very low so I decided to dress her and get her out of bed. My hands were shaking as I zipped up her coat and thought 'what the heck I'll take her for a walk'. Lifting her into a w/chair, wrapper her in a blanket and took her on a three mile stroll, that made it a wonderful Christmas! I know there is a lot going on in her head. Although she can't talk we are closer now than we've ever been after 51 years married. After 11 years with Alz I have accepted, to savour the time we have as there's nothing Doctors or 'experts' can do for her, they treat the body after it's damage through neglect of the mind. TLC as they call it has to come from the very soul and heart to be effective, hence I don't need outsiders. From a five stone sack of bones, she's become a tubby eight and a half stones. The only downside is having to lift her in and out of the car. Yes I had trouble walking her up as well, but now she is on a even keel, sleeps a lot but is content. I wish you and your Mom well and God bless. Padraig

 

[Grannie G]

Well Padraig, What a wonderful story.
I was totally unaware of your triumph, and triumph it certainly is. I hope I`ll have half your courage when my time comes and I hope you and your wife have many more Christmas`s together.
In absolute admiration. Sylvia

 

[eagle]

Thank you all for your views and support so far.

Most of you have said exactly what i have been thinking. I personally feel that the peg feed is the only thing that is keeping her going as she does not have the choice to stop eating. When we have briefly mentioned this to the home the response was not very positive and they made me feel extremely guilty for even suggesting that we should consider thinking about the continued the use of it

I think the most important thing here is the quality of life which is now non existent.

Thank you for your advice so far

 

[jenniferpa]

Eagle, do you have any family members to back you up on this? It can be tough when confronted with professionals who assume that a family wants everything possible done to keep their loved one alive. This might possibly be the flip-side of a very good nursing home.

Jennifer

 

[Sandy]

Hi eagle,

You might want to take a look at the Alzheimer's Society's position paper on palliative care:

http://www.alzheimers.org.uk/News_and_campaigns/Policy_Watch/palliativecare.htm

The Society's paper makes reference to the General Medical Council's Withholding and Withdrawing Life-prolonging Treatments: Good Practice in Decision-making, which you might want to look at yourself:

http://www.gmc-uk.org/guidance/current/library/witholding_lifeprolonging_guidance.asp

This must be a tremendously difficult time for you and your family. Part of the problem is that the decision to remove the PEG is slightly different from the decision to start it in the first place. It is possible that without the PEG your mother might be able to take nutrition on her own, if her swallowing reflexes are still working. If she is not able to swallow on her own then you'll know that her health has deteriorated to the point where, as you fear, the PEG is keeping her alive artificially.

The staff are your mother's home (are they medically-qualified staff or general care staff?) should not make you feel guilty in any way for wanting to at least explore these issues. As the GMC web page shows, these are issues that need to be openly, but sensitively, discussed.

Take care,

Sandy

 

[Norman]

Hi Eagle
You may find it helpful to have a look at palliative care explained.
Go to
www.ncpc.org.uk/palliative_care.html.
Best wishes
Norman