Withdrawal of fluids without my consent.

[jilljay]

My husband is in the last stages of vascular dementia and the medical team ,without consulting me have taken him off his 'drip'.He obviously isn't eating or drinking. He has not appeared in pain and I feel that I should have been consulted and my wishes taken into account. I do think he should go into a hospice because I feel the care would be greater than an over worked, short staffed hospital ward. What rights do I have? Am contacting the palliative team tomorrow but wonder if there is something I havnt said or done for him. One comment made by a young doctor was ..he is taking up a hospital bed and has no quality of life!!! She did say a lot more and was in her own way very kind,but insisted NO MORE 'drips'. I would be grateful for your advice.
Jeanette.

 

[WILLIAMR]

My husband is in the last stages of vascular dementia and the medical team ,without consulting me have taken him off his 'drip'.He obviously isn't eating or drinking. He has not appeared in pain and I feel that I should have been consulted and my wishes taken into account. I do think he should go into a hospice because I feel the care would be greater than an over worked, short staffed hospital ward. What rights do I have? Am contacting the palliative team tomorrow but wonder if there is something I havnt said or done for him. One comment made by a young doctor was ..he is taking up a hospital bed and has no quality of life!!! She did say a lot more and was in her own way very kind,but insisted NO MORE 'drips'. I would be grateful for your advice.
Jeanette.

Hello Jeanette.

I am sorry about your husband.
Looking from a practical point of view how long has he got to live?.
When my father was at the last stage of his life the doctor said he could live up to 10 days. He lasted less than a day.
When my mother passed away in 2003 it took them nearly 3 weeks to find a hospice bed and she passed way about 4 weeks later.
I don't know what the hospice situation is as of now but I think you can see what I am driving at.
If this type of situation is happening I do think you should be told.

William

 

[angecmc]

My husband is in the last stages of vascular dementia and the medical team ,without consulting me have taken him off his 'drip'.He obviously isn't eating or drinking. He has not appeared in pain and I feel that I should have been consulted and my wishes taken into account. I do think he should go into a hospice because I feel the care would be greater than an over worked, short staffed hospital ward. What rights do I have? Am contacting the palliative team tomorrow but wonder if there is something I havnt said or done for him. One comment made by a young doctor was ..he is taking up a hospital bed and has no quality of life!!! She did say a lot more and was in her own way very kind,but insisted NO MORE 'drips'. I would be grateful for your advice.
Jeanette.

No advice Jeanette, just sorry you are going through this, I am sure you have said and done everything you could to support your husband, thinking of you xx

Ange

 

[jilljay]

Carers are vital

I spoke to a member of the palliative team today who took up my concerns.She saw a Doctor etc and my husband's drip has been returned. He is also being referred to the local Hospice. How do people manage out there who need help and support but have no one to fight their battle??
I cant thank the palliative team enough for their help!!!

Jeanette. l

 

[meme]

you are doing the best you can for your husband...well done for arranging hospice care for him, I hope this comes very soon.

 

[Benrese]

I'm glad someone is now on this for you. Your point is very valid, indeed! I fear for those poor people who are not able to fight such difficult battles. It shouldn't have to be "the squeaky wheel gets the grease"!!

Take care and hope you get all the support you need x

I spoke to a member of the palliative team today who took up my concerns.She saw a Doctor etc and my husband's drip has been returned. He is also being referred to the local Hospice. How do people manage out there who need help and support but have no one to fight their battle??
I cant thank the palliative team enough for their help!!!

Jeanette. l

 

[jilljay]

Such a late reply! Am so sorry.

My husband died approx three weeks later. He was sent to a palliative health home with highly qualified staff. Only there for three days! At the time I was dealing with two people with different types of dementia.My husband with vascular dementia and am still caring for my daughter who has an atypical dementia but also has severe learning disabilities.My husband had much more health and support than my daughter and the situation seems to be getting worse with the budget cuts.Am disgusted with the lack of proper help and support out there and just read an article from a mother aged 84 (I think)in a north newspaper saying much the same as me. L/D and dementia I think is definitely bottom of the list Am hoping someone will tell me differently. Believe me I continually raise the issue but have never seen an improvement. There are continual reports of careworkers who treat their patients badly,stealing or aggression,towards them so will not contemplate a residential home.,until I am physically/mentally unable , and guess many other carers feel the same. I did try to find my thread about my daughter but such a long time ago ..couldn't find it.Am so sorry it took so long for me to send a message to those who answered my posts about both of them.

 

[lin1]

Dear Jilljay. I am sorry to hear about your husband, please accept my condolences.
I am so glad you were able to get your husband into a good palliative care facility.
I'm not sure but I think I may have found the thread about your daughter, apologies if I am wrong

http://forum.alzheimers.org.uk/showthread.php?3795-My-daughter-with-Downs-syndrome-and-dementia

 

[Grannie G]

I`m really sorry to hear your news jill but glad you were pleased with your husband`s care during his final few days.

It`s painful to hear of the lack of provision for your daughter.

 

[jilljay]

Thankyou Lin and Grannie

Thank you Lin and Grannie for your kind posts. I have an extremely painful lower back and left hip plus IBS at the moment so asked for a few days of respite care for my daughter.The answer came back no! They have no empty beds at the place she has attended for the last 20 years.This is because of the cut backs.They have closed half of the unit to save money! Was informed I could concider totally strange places for her but wouldnt even think about that as she needs continuity and staff etc that know her. We will just have to muddle on as most Carers do!! I think the only people who care about Carers are Carers or excarers.One day I hope to find The Alz society supporting L/D and Dementia,but don't think the time has arrived yet.