Mum refusing help from carers at care home

[tuscon]

Hi I am new here and wonder if anyone has any advice for me.

Mum (94 - dementia with lewy bodies) moved to a care home 10 weeks ago as she could no longer manage on her own in her sheltered accommodation. I still feel so guilty for having gone down this route so I visit her every day for 3-4 hours. I haven't missed a day since she was there and it is getting me down. The reason for this is that mum will not let the carers touch her or do anything to help her. She refuses to go to bed and "sleeps" in her arm chair. The home has now provided her with a recliner as she now has pressure sores on her heels. Once I am there, I have to coerce her to get washed and/or showered, toileted and dressed. She now has a cathether and I even have to empty that because she won't let anyone near. The home say they cannot force themselves on her if she refuses. My concern is, what if I cannot go one day for whatever reason? Will mum have to sit around soiled and unwashed all day because she won't let them near? After 10 weeks of this I am getting very stressed and emotional as I cannot bear the thought of her sitting there waiting for me to come. Is there anything I can do to make them ignore her wishes?

I'd be grateful for any advice. Many thanks.

 

[jaymor]

Hi Tuscon and welcome to TP.

Have you always visited for 3/4 hours a day or have you started visiting for this length because you feel you need to deal with this problem?

If you have stayed so long every day then she may be refusing help because she knows you will be there to do it. Refusing care within a care home is very common and unfortunately their hands are tied because being over zealous in trying to help is regarded as abuse. They can coax and keep asking but they cannot make them do anything against their wishes.

My husband refuses drinks and food and the staff are great and they persevere for hours but if he says no or keeps his lips firmly closed and turning his head then they have to accept his refusal. I can go a bit further than they do and I tip his beaker up and let drops go onto his tightly closed lips. He then licks his lips and opens his mouth because he has tasted the drink. The same with food, a little put on his lips and he licks and away we go. He just needs the taste but they can't do as I do. At the moment he is taking food and drink from the carers so hopefully that particular behaviour has passed.

It is the same with bathing, the carers start in the morning but sometimes it takes all day of constant coaxing before some of the men agree. They have the patience of a saint.

Human rights, health and safety don't really help us in caring for someone with dementia.

Jay

 

[tuscon]

Hi Jay

Thank you for responding.

Yes, I have been visting every day because of this problem and because of the guilt I feel for her being there. However, today I couldn't visit as I had car problems. I explained this to mum yesterday when I was there and I think she understood.

You are right about her refusing help because she knows I will be there to do it. This afternoon a carer called me to say that mum has been "on good form". She agreed to let them dress and wash her, to have breakfast and lunch in the dining room and to go to the lounge (she has refused to go to the dining room and the lounge since day 1). Although she has been refusing to eat as well, I am told she picked at her food. She has been existing on whizzed up soup for weeeks now. She also agreed to attend the sing-along in the lounge, even requesting songs! She obviously needs some persuading, though it hasn't worked in the past. Long may this continue, though tomorrow we could be back to square one.

I hope that you continue to have success getting your husband to eat and drink. You too have the patience of a saint. I guess we all have to develop this particular trait just to be able to get through each day. I am relatively new to this but I am learning fast.

Thanks for reading and for your time.
Tuscon

 

[Solihull]

Hi Tuscon,my Mom didn't settle in her care home at first but is getting a lot better. In fact, I only visit twice a week for one hour each time & even feel that my presence sometimes confuses her as she is fine when I am not there apparently. So having said this, I think her "new life" is becoming acceptable and we are the ones that need to step back although it is very hard. I just visit, chat and give her lots of love. She is safe, clean and well fed, unlike before xx

 

[Canadian Joanne]

Tuscon,

I agree with Jay that part of it may lie in the fact that she knows you'll be there. I too visited my mother every day when she first went into care. Eventually I started cutting back. Why don't you trying cutting back a bit? Even just cutting out one day a week? I know you feel guilty but it is not your fault. It is still early days yet for your mother at the home so I think she simply needs more time to settle in. Also, you being there so much might be keeping her from settling in faster. Now, in hindsight, I wonder if that's what kept my mother from settling in.

You have no reason to feel guilty. Continuing to visit every day when it is getting you down does you no good. Please take care of yourself.

 

[Starlight123]

Your mother's ability to live her life as she chooses has become very limited, but at least she still has the ability to say 'no' when she doesn't want something, and to have that wish respected. If your mother is receiving good care, there should be trained carers around who can bond with her and find kind ways to encourage her to allow washing etc. At the moment she clearly still trusts you which is great; it will be better for her if she can also trust a good carer. Does the care home do anything to encourage staff to bond with residents i.e. to sit down and talk to them using memory aids or to complete personal profiles with them? If you can get your mum to trust one or two of the staff then this will take the pressure off you so you can have your life, which is just as important as making sure your mum is well cared for. If you do all you can to ensure your mother is well cared for then feel sad for her yes, but please don't feel guilty. Dementia isn't something that any one person can manage - it takes a group of people to work together to offer the best support.

Hi I am new here and wonder if anyone has any advice for me.

Mum (94 - dementia with lewy bodies) moved to a care home 10 weeks ago as she could no longer manage on her own in her sheltered accommodation. I still feel so guilty for having gone down this route so I visit her every day for 3-4 hours. I haven't missed a day since she was there and it is getting me down. The reason for this is that mum will not let the carers touch her or do anything to help her. She refuses to go to bed and "sleeps" in her arm chair. The home has now provided her with a recliner as she now has pressure sores on her heels. Once I am there, I have to coerce her to get washed and/or showered, toileted and dressed. She now has a cathether and I even have to empty that because she won't let anyone near. The home say they cannot force themselves on her if she refuses. My concern is, what if I cannot go one day for whatever reason? Will mum have to sit around soiled and unwashed all day because she won't let them near? After 10 weeks of this I am getting very stressed and emotional as I cannot bear the thought of her sitting there waiting for me to come. Is there anything I can do to make them ignore her wishes?

I'd be grateful for any advice. Many thanks.

 

[Starlight123]

I'm not sure why putting a little food or juice on your husband's lips would have constitutes abuse by a carer if a) he allowed the carer to do this, and b) tasting the food helped him understand that it was time to eat. This doesn't sound right to me. Obviously the carers can't force anyone to do anything they don't wan't to do, but having said that the carers' job is to find good, effective ways to care for people as individuals. You could discuss this with the care home manager if you have similar problems in the future.

Hi Tuscon and welcome to TP.

Have you always visited for 3/4 hours a day or have you started visiting for this length because you feel you need to deal with this problem?

If you have stayed so long every day then she may be refusing help because she knows you will be there to do it. Refusing care within a care home is very common and unfortunately their hands are tied because being over zealous in trying to help is regarded as abuse. They can coax and keep asking but they cannot make them do anything against their wishes.

My husband refuses drinks and food and the staff are great and they persevere for hours but if he says no or keeps his lips firmly closed and turning his head then they have to accept his refusal. I can go a bit further than they do and I tip his beaker up and let drops go onto his tightly closed lips. He then licks his lips and opens his mouth because he has tasted the drink. The same with food, a little put on his lips and he licks and away we go. He just needs the taste but they can't do as I do. At the moment he is taking food and drink from the carers so hopefully that particular behaviour has passed.

It is the same with bathing, the carers start in the morning but sometimes it takes all day of constant coaxing before some of the men agree. They have the patience of a saint.

Human rights, health and safety don't really help us in caring for someone with dementia.

Jay

 

[jaymor]

I'm not sure why putting a little food or juice on your husband's lips would have constitutes abuse by a carer if a) he allowed the carer to do this, and b) tasting the food helped him understand that it was time to eat. This doesn't sound right to me. Obviously the carers can't force anyone to do anything they don't wan't to do, but having said that the carers' job is to find good, effective ways to care for people as individuals. You could discuss this with the care home manager if you have similar problems in the future.

Unfortunately you have not seen the lengths my husband will go to when he sees anything coming towards his face. I may have over simplified my efforts to get the food or drink onto his lips but I do manage it. They will persevere for long periods of time and manage to feed him as he has a very healthy appetite it just takes them longer than me to get him started. They cannot do as I do nor would I want them to.

He has 1:1 care so the time it takes is irrelevant.

 

[Starlight123]

Hi, do you think he is moving away from the spoon because he doesn't understand he's being presented with food, or because he thinks there is something wrong with the food because it's not being given to him by the person he trusts the most? Or is it that you have developed a much better technique than the care staff?

I believe there has been some research done on using the smell of food to help people with dementia understand that food is coming and that this has shown some good results in encouraging people to eat.

Good luck to you anyway.

Unfortunately you have not seen the lengths my husband will go to when he sees anything coming towards his face. I may have over simplified my efforts to get the food or drink onto his lips but I do manage it. They will persevere for long periods of time and manage to feed him as he has a very healthy appetite it just takes them longer than me to get him started. They cannot do as I do nor would I want them to.

He has 1:1 care so the time it takes is irrelevant.

 

[Adamski]

I know it doesn't solve the overall problem but Nilaqua water free bathing products that you can use in a chair may help with keeping her clean

 

[Jessbow]

It sounds like there is a glimmer of light on the far horizon with your situation- given what happened today.

I wonder if sometimes its a chicken and egg situation- she wont conform so you go and do it, and because you'll go and do it, she wont conform

Given that she seemed to understand the situation today, introduce a few more days randomly, so she gets a bit more used to carers doing it, and give yourself a break.

It will be hard to start with, but from little acorns, oak trees grow - If, heaven forbid you should fall ill, she'll need to be familiar with carers doing it.

I used to work with profoundly disabled children. Many of the mothers were totally devoted, absolutely flatly refusing respite for their child, because they could manage. It wasn't about their ability to manage, its was about the child managing an unusual situation and being used to respite in the case of an emergency.

Same kind of thing really. Its for both sides.

Be strong with yourself, even if she goes one day unmwashed she'll survive! She might be refusing activites in case she misses your calling in. Who knows how their minds work?

 

[tuscon]

Things have gone downhill since I last posted

Hello TPers
It has been a difficult time since my last post in October. Mum eventually did accept some help from the carers but I was not too happy with certain aspects of her care. It seemed that I was always in the manager's office complaining about something or asking for things to be done that should have been. Her ability to walk on her own using the frame has completely gone now and she has to have someone with her. Her weight has plummeted to 5st 5lbs and she is very weak, is skin and bone and I am watching her fade away. She refuses all food and is surviving on pieces of peach that I take in, Fresubin supplements sometimes, about half a mug of tea or coffee every now and then, 50ml of chicken soup if I can get her to have it and red berry juice which I now give her in a baby cup. I ignored all advice not to visit her every day and I am there for 3 hours. Yes it has been extremely tiring but I know that when I am not there, very little effort is made to make sure she drinks. Mum refuses to leave her room, so she spends all day in a reclining chair. They leave drinks on her table and there is no way she can (a) manage to get it to her mouth or (b) remember to drink. While I am there I keep getting her to drink and she will get through 100 ml. Today I have had the most horrendous and harrowing time at the CH. Mum was in bed and refused to get up or acknowledge that I was there. Her lips were chapped, her mouth dry and I tried to get her to drink, to no avail. She was scared, staring and lashing out at me, biting and scratching. I found out that mum has been given a 5mg analgesic patch for pain and this has caused a complete change in personality. I have never seen her like this and I was in pieces. One of the carers tried to get her to drink but had no success either. I got her to remove the patch and hope I haven't made the problem worse. In addition, she has a UTI (the 4th) and is on anti-biotics as well. It seemed to me that they put her to bed last night and left her. I now wonder if I can get her moved to a nursing home but have no idea how I go about this. Do I approach her GP? Previous requests to the CH have been shot down - they say she would not get any better care than she is getting now. I somehow don't believe that.

On a side note, my sincere condolences go out to everyone who has lost a loved one to this cruel disease. I have followed the threads and I have wanted to respond to everyone but just haven't had the courage to "write" to kind and courageous people I don't know. As I am relatively new on here, it feels as if I am being intrusive. So even though I have "kept my head down" I have felt the pain and heartache suffered by you all and have shed tears of my own.

I don't know what else to say except to wish for peace and strength for all of us in the days ahead.

 

[Gigglemore]

Sorry, sounds like you have been so busy desperately trying to do the actual caring for your Mum that you have not had the strength to stand back and think about moving her.

I think you are very dissatisfied with the (lack of) care. If she is self-funding then surely you can look at nearby nursing homes asap and try to find a place before your poor Mum deteriorates any further. The new home I am sure would arrange the transfer - the current CH can not stop you moving her if you have POA, though if she is very frail and poorly now it seems a challenge.

Sorry I have no experience of the situation you are in as when I moved my Mum she was still mobile. Perhaps you could phone the Alzheimers Society helpline for advice and support?

Hopefully someone else with a bit more understanding of the implications of moving your Mum at this stage will come along with some advice soon.

 

[tuscon]

Mum is not self funding and she came to her current care home (near us) from a London Borough. It took a long time for them to approve funding so I have been reluctant to start the process all over again because I will have to get their approval to move her. If she is to be moved, I would prefer it to be to a nursing home but have no idea if they would agree. I got the CH to remove the patch yesterday and today she was calm and happy to see me. I have no idea why the GP prescribed the morphine patch as she has no debilitating illness, is not in intense pain just the odd twinges/back and leg ache. She agreed to me giving her a shower and by the time I left she had had quite a lot of her supplement drink, a little tea and a bit of peach. She was asleep before I was out of the door! However, tomorrow is another day and who knows what it holds.
Thanks for your time.

 

[Ash148]

Dear Tucson,
I have walked in your shoes and just want to empathise. No particular insightful advice to offer, just to say that you and only you will now what's best for your mum. Hope you are able to find it.

 

[Gigglemore]

Tucson - I'm so glad your Mum seemed better after the removal of the patch. I am worried about YOU - I'm not sure if you have other close family who are giving you any emotional support?

I wonder if you could still phone the helpline and see what they say - it might do you good to be able to discuss the situation with someone sympathetic and helpful.

You are doing a great job supporting your Mum, but please look after yourself too.

Take care.

 

[tuscon]

Thank you for your concern Gigglemore. I have one sister but she lives abroad so the only support from her is via Skype/emails. She was here last August for 3 weeks but had to return and I am hoping she will be back later this year. My husband has been wonderfully patient with my daily absence. He retired last year aged 73 and we were hoping to spend time doing the things we never got to do while the children were young and we had jobs to go to. We also down-sized in June last year but I have not had the inclination nor time to settle in. One day .....

My daughters live miles away and visit when their children are on school breaks but keep in touch regarding their grandmother. However, Mum does not recognise them until I mention names. The girls end up in tears - they find it difficult to accept that this is the grandmother who never stopped talking!

Today Mum was quiet and very sleepy and I had a job getting her to drink her supplement/juice. The few words she said to me were jumbled and made no sense and having any kind of "conversation" is a thing of the past. I spent a lot of the morning taking in the waist bands of her trousers and pyjamas!

I will call the helpline and see what they say.

Thanks again for listening. T

 

[tuscon]

Thank you Ash for your support. It is nice to be able to "talk" to others who have been there. It is so hard to accept how things are now. No hope of mum ever getting better - it's just awful. What I can do is be there for as long as it takes. A big plus is that she still knows who I am and for that I am truly grateful.
Tuscon