What do we do now?

[whoareyou?]

I wrote a few weeks ago about the problems we had had with my sisters allowing Mum to have a DNR on her notes. Unfortunately Mums condition has worsened over Christmas and the New year.

She has been a resident in a care home for the past 3 years and seemed well looked after in the main but recently there has been a change of staff and this has hit her hard! She fights whenever personal care is attempted and was put on an ABC plan which meant that the home used between 2/3 carers when attempting her personal care. Mum has always been a very private person and this has had a terrible effect on her. She appeared to have decided before Christmas to give up, refused to eat or drink apart from an odd sip if one of us was with her.

By New years eve she was in hospital was a urine infection and the doctors were concerned that her kidneys were failing! She appeared to be almost comatose! The hospital have over the last 3 days had her on a constant dextrose drip and this has appeared to recharge her energy level as she is now awake and sitting up. But she hasn't been out of bed, she is doubly incontinent and is still not eating or drinking! The hospital appears to have decided they want to release her back to the care home! But we know that if she is returned their she will spend her remaining days, weeks stuck in a bed, in her room occasionally getting visited by a member of staff ! The residential home cannot cater for someone who is bed ridden but what can we do? We would like her to go to the community hospital where they might be able to get her eating and drinking and up on her feet! But can we insist on it or insist on a nursing home placement? We just feel hopeless not knowing what to do for the best for Mum. My apologies if this sounds garbled I'm feeling a little frazzled!

 

[jaymor]

Hi,

You need to speak to the doctor in charge of your Mum's care in the hospital and tell him/her of your concerns re going back to a residential home and you need to speak to the Manager of the home as to what care they can put in place should your Mum return there.

Moving from a residential home to a nursing home will depend on what the hospital say your Mum will need and she may need to be assessed if she is not self funding.

Get the opinion of the medical staff at the hospital and go from there. Make it clear to them that the home is only residential as a lot of the time hospital staff seem to see care as care and that is sufficient when it is the level of care that is important.

 

[jenniferpa]

I would be slightly surprised if the care home would feel they were able to cope now with your mother. It is standard practice after a hospital stay for the home to reassess to see if they can provide care - do you know if this has been proposed?

Is your mother self-funding or LA founded?

 

[Pickles53]

The first consideration should be an assessment to see if mum would qualify for CHC funding. If it's not been done yet, starting with the checklist, I'm sure this should be considered before an assessment for Funded Nursing Care.

There are lots of experts on TP who can tell you more about CHC but just thought I would flag it up.

 

[whoareyou?]

Mum is fully funded by the LA. I have been in touch with her social worker who hadn't been informed about Mum going into hospital. She contacted the hospital and it appears it's been decided that Mum isn't well enough to leave hospital yet(phew!). She has been taken off the drip but still isn't eating/drinking very much and she seems to drift in and out of sleep. When she is awake she is communicating with smiles and definate no's when asked a question!

They intend to reassess tomorrow afternoon. My sister (p) who has had most contact with Mum's Doctors, carers (She lives closest to mum ch), originally said that she didn't want Mum returning to the ch as she felt they couldn't cater for Mum. They are very short staffed and although they say they are a dedicated dementia ch don't seem to know the correct way to care for dementia sufferers! My sister & my daughter are both NVQ grade 3 trained hca's and as well as that my daughter has taken a dedicated Dementia training qualification and is a 3rd year student nurse! So we do know what is needed! But (p) has changed her mind and now feels that if the hospital can get Mum mobile she should go back to the home? I'm really concerned that if she goes back to the ch she will be back in hospital within the month. I've seen the carers placing drinks on the tables in front of the residents and they are not touched, the same with the food! There is usually only 1 member of staff per unit (8 residents per unit) they don't appear to have the time or interest in tempting the residents into eating or drinking! I feel tied up into knots - do I make a fuss even though though my sister has had a change of heart or do I allow Mum to go back to the ch and keep my fingers crossed. I'm hoping that the ch say they cannot cater for Mum's needs and that she will be moved somewhere else!

 

[Navara]

My mother was in hospital all of January and the care home she was living in said she couldn't return unless she could walk using a zimmer frame plus one carer max. As she never got out of bed for a month, that wasn't going to happen. We were therefore told to go off and find her a nursing home (she's self funding) and she moved there straight away on discharge. Because she didn't qualify for full nursing funding just the £110 per week nhs contribution, she's now having to pay considerably more per week for her care.

Unfortunately if your mother is LA funded and they do decide she needs to move into a nursing home she'll probably have to wait in hospital until one of the standard priced nursing home rooms becomes available. There were several people on the ward my mother was on who were in that position. Going round the nursing homes in our area it was very obvious that there were plenty of the higher priced rooms available but very few standard ones as they are snapped up by the LA. This is why bed blocking occurs. This may not be the case in your area though.

 

[whoareyou?]

Mum has been very lucky and now has full funding from NHS. She moved into the most beautiful nursing home 2 weeks ago (We are paying a suppliment for a slightly larger room). I can't count the number of times all of us have rushed in because it looked like she was leaving us. But even though she hasn't eaten or drunk anything for a week or more she is still with us.

She sleeps mostly but every now and then she wakes with a start, eyes wide looking terrified and it is so upsetting to not understand what is going on in her head! I hate to think she is frightened and in pain but I am assured by the wonderful nursing staff that she is not in pain but who knows wether she is frightened. We talk quietly to her and gradually she will calm and sleep again but it is harrowing to watch.

Her breathing will be calm and steady and her pulse is good and strong. Then suddenly her breathing becomes rapid and gasping! I stayed for a few days at my sisters but I have returned home which is 150 miles away, we have rushed up the motorway once but all has been calm for the last 2 days!

I hate saying this but I hope she slips away soon as it is heartbreaking to watch her, and not be able to do anything but hold her hand!

 

[Navara]

Awful isn't it? I'm now fortunate in that I only have a half hour virtually door to door busride I have two friends in similar positions to myself - all our mothers are 88/89 and we're all in complete agreement that if they could have fallen asleep at 80 they would have been spared 8 or 9 years of misery. I don't know what the answer is to all of this but it terrifies me to think what its going to be like in 20 yrs time as we 'boomers' reach that age.

 

[sinkhole]

Awful isn't it? I'm now fortunate in that I only have a half hour virtually door to door busride I have two friends in similar positions to myself - all our mothers are 88/89 and we're all in complete agreement that if they could have fallen asleep at 80 they would have been spared 8 or 9 years of misery. I don't know what the answer is to all of this but it terrifies me to think what its going to be like in 20 yrs time as we 'boomers' reach that age.

Personally, I feel we should all have the choice. I would not want to cause my loved ones all the stress and hurt I have read about if I were to develop a condition like this.

 

[whoareyou?]

Mum watched her Mum & Dad slowly die from this hateful desease and I know she was terrified by the idea she would get it! When she realised she had dementia she spent days crying and depressed because she knew what lay ahead! My sisters and I know that chances are that we too will end up in this way too since not only Mum and her Mum & Dad but also Mum's brother have died from it!

I think it's the fact that nothing seems to be improving for dementia sufferers! It seems that every few weeks we get stories about breakthrough treatment for cancer but nothing for dementia! I want to scream loudly and shout at the top of my voice when is something going to be found that will cure or at least prevent it. They keep coming out with this rubbish about not eating this or staying fit and healthy but my Mum weighed 8stone 6lbs from her wedding day until a couple of years ago! She rode her bicycle 4 miles most days! She was totally fit and yet it got her and because she was fit her heart is strong and thats what keeps her here suffering! I think I would rather become unfit, eat too much and drink too much and die early from a heart attack than put my family through this hell!

Woah! Sorry I don't know where that rant came from but it's nice to get it off my chest

 

[angecmc]

Yes, there is nothing we can do to prevent us possibly getting dementia, we just have to cross our fingers and hope. I keep saying lets do as much and spend money to treat ourselves while we can, to my husband, as my Mum, two Aunts and my Nan have died or are dying from this vile disease xx

Ange

 

[Navara]

I couldn't agree more. It does make you mad.

Unfortunately I'm torn between the "lets spend it all now while we can" attitude and the "lets save so that if we do need care we can arrange things independently and have freedom of choice".

 

[whoareyou?]

Mum finally gave up her battle this evening. Fortunately when the end came it was swift but gentle. I was 150 miles away but she had two of my sisters with her so she wasn't alone.

 

[jugglingmum]

Sorry to hear that. TP hugs on their way to you.

 

[sleepless]

I am so sorry you have lost your dear mum, but thankful for you that the end was peaceful, and she is now free of dementia.
Wishing you peace, and strength for the days and weeks to come.

 

[Pickles53]

Sending you and your family my deepest sympathy and wishing you peace and strength.

 

[LYN T]

I'm so sorry that your dear Mum has passed. Please accept my condolences.

Lyn T XX

 

[Izzy]

I'm sorry to read your news but glad the end was gentle and that your mum is at peace. Sending condolences.

 

[jaymor]

Sorry to hear your sad news and sending my condolences.

 

[Navara]

Sorry for your loss - she is out of her agony.