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Carers UK Forum • First time carer
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First time carer

Posted: Fri Mar 04, 2016 5:28 pm
by joyce_1603
Hi, just joined this forum as I would like to share my experiences with other carers. My mum has been with me and my husband for 2 years now. She came to live with us as a result of a fall in her flat, where she spent 8 hours on the floor, before contacting me. I always promised she wouldn't go into a home, and I have kept that promise. She is now 91 years old and very frail, she has also COPD. She has been house bound now for 5 yrs and wouldn't even cross over the door. Things are now starting to get difficult, as she wouldn't wash and refuses my help. How she has lived this long is a mystery as she eats hardly anything. I would love to hear from others in this situation, I am now waiting to go in to her bedroom to find she has died.

Re: First time carer

Posted: Fri Mar 04, 2016 6:03 pm
by jenny lucas
Joyce - hi, and welcome to the forum. Lots of us here are 'elder carers'. (I 'inherited' my MIL two years ago when it was impossible for her to live independently any more, and I couldn't cope with six hours up the motorway to visit her or bring her back to me!)(sadly, a care home was the only practical solution, after I'd nearly had a nervous breakdown with the stress of coping with her all on my own, as I'm widowed, and her surviving son is in the USA)

So, plenty of fellow-feeling here for the difficulties and challenges of caring for the very very old.

From the way you've described the changes that have started happening, I'm wondering whether dementia is sadly setting in? Loss of hygiene, general refusal and 'non-cooperation' are all hall marks alas, and can making looking after someone with dementia very very challenging! (There is, alas, no 'reasoning' with them any longer - they don't understand what is happening to them, that it is happening, and why it is therefore 'difficult' for you....they become, in a way, almost like 'elderly toddlers' which is both sad and frustrating...)

Has your mum had a medical assessment of her mental health? That might be a first start. Though, in a way, does it actually matter if she's assessed. My MIL with dementia was only informally assessed by the manager of the care home (who had so much more experience than me), and it's a 'given' that yes, she has dementia, but no doctor has actually ever 'signed her off' as such.

Is she still capable of running her own financies, or do you now have Power of Attorney? I do hope so, as this will be impossible to acquire if dementia has set in (I don't have it for my MIL, but very fortunately she was able to open a joint bank account with me just before she got really bad, so it enables me to administer her finances for her)

Do you have any help with your mum? This could be good, not just to give you a break, but also because what she may refuse to do for you (her daughter) she may be more amenable for a 'nurse' type person. Also, care-workers are very skilled in the sheer challenge of getting a very frail, elderly person clean (it's so, so common for the very elderly to hate bathing - it's cold and uncomfortable and tiring and really they see no reason for it!)

It does sound, overall, that your mum has crossed one of the almost invisible boundaries into yet another stage of extreme old age. This may indicate the start of herself 'saying goodbye', or it may last for several more years yet. That in itself can be challenging.....

Wishing you all the best, at a poignant time, Jenny

Re: First time carer

Posted: Sun Jun 12, 2016 11:09 pm
by joyce_1603
Thank you so much for your reply Jenny, its great talking to somebody who understands. Unfortunately dementia has now set in and I've been told she also has COPD. I have a baby monitor now as she has fallen in her bedroom, and I'm scared she will fall again and I won't hear her. I do have Power of Attorney over her finances, as I said before she has been house-bound now for 5+ years. I have two sisters, one living in England and one not too far away, but the responsibility of caring for my mum is solely my responsibility. She refuses any kind of help with her hygiene and I know she isn't washing herself anymore. Last night I found her washing her false teeth in her tea. Getting her hair washed is a nightmare, I have a perching stool for her to sit on, but I have to be really fast.

Once again, thank you very much for taking the time to read this, its a great help.

Re: First time carer

Posted: Sun Jun 12, 2016 11:16 pm
by jenny lucas
I think you need to organise careworkers to come in who are specialised in dealing with reluctant dementia patients (and there are a LOT of them!). Remember, 'outsiders' can get them to do things they won't do for us (w'ere their daughters, and they are used to calling the shots with us, not the other way round!). Good care-workers can be very skilled in their jobs, and I think the time has now come. This is not a 'betrayal' of your mum's wishes, it is part of her care.

Think of her not as an adult any more, but as an 'elder toddler'. If you had a toddler who refused to wash, you'd wash them irrespective of their protests. That is the same now for your mum.

When the care workers arrive, you can be with them for the intro etc, and then you GO AWAY - if your mum thinks you are still in the house, she will call for you (again, think elder toddlers!)

All the very best. You are doing a fantastic job, keeping your mum with you, but the time may be coming when she NEEDS to be in a care home, to ensure the right level of care is being provided in an environment which is safe for her.

Re: First time carer

Posted: Sun Jun 12, 2016 11:40 pm
by bowlingbun
Welcome to the forum. Mum is now paying the price for living so long. However much you don't want her to go into a home, she is clearly fast approaching the time when she is going to NEED 24/7 care to protect her from being a danger to herself and/or others. Don't do what my father in law did. He denied that he was struggling, refused to look at any local care homes - one was lovely, only half a mile away from his place. In the end, there was a crisis, MIL had to go into a home immediately, and the only vacancy was 15 miles away. Good homes have waiting lists. Can I ask if mum has over £23,000? If so, then she will probably be classed as "self funding". A better choice of homes, but they cost a lot of money. If not, then Social Services may fund her care, but the choice will be limited. So before you look at any homes, decide which category mum falls into. Make sure it's a home which provides for dementia and nursing care, so she will never need to move again. Some homes do "day care" as well as respite care, which would give you some "me" time. For a full list of homes in your area, look at the Care Quality Commission website.

Re: First time carer

Posted: Sun Jun 12, 2016 11:59 pm
by Elaine
Hello Joyce
I took on my Mum's care when she was 90. She is 100 in August and has only just gone into a Nursing Home because the amount of care she needed was getting too much for all of us. By all of us I mean the fantastic care team I had in place who helped both of us so much, friends who visited, a 'cleaner' who is one of those genuine treasures, but mainly me.
There comes a time when the amount of care you can give is just not enough. When someone so elderly needs a nurse on hand day and night and instant and experienced medical care.
Mum always insisted she didn't want to go into a Home. I didn't want her to either. Thank goodness she accepted her care team and enjoyed their visits, otherwise I would never have managed for so long. But the time came when I was so tired, so on the edge of some sort of breakdown from the unrelenting, constant worry and physical caring that something had to be done. I didn't have the training, the knowledge or the experience to be able to look after her increasing needs as they should be. It wasn't right for either of us. Mum has deteriorated lately. She was well down that road before she moved into the Home. I could never have coped with her current state.
Has the time come for you to hand over do you think?
Elaine

Re: First time carer

Posted: Fri Jun 24, 2016 10:03 pm
by joyce_1603
I made an appointment to visit my mums doctor, as I didn't know what else to do. I explained everything to her regarding her refusal to get washed. She came out to the house and did a medical assessment, and gradually brought the subject up about her personal care. The doctor said she definitely has dementia. The doctor did a test and she failed terribly. She absolutley refuses to have carers, but did agree for me to help her. So for 3 mornings I went in with a basin of hot water and helped her wash, change her underwear etc. Last night she went to bed at 8.45pm. This morning I heard her get up very early, and when I went in at 9.30am she was lying on the bed with her dressing gown on. She said she was getting washed, she was exhausted. When I said about bringing a basin in to help her she said don't bother, I have already done it. I asked her if she changed her pad and underwear and she said it was necessary. So she has gone to bed 8.45pm tonight(she usually goes about 10) and I'm sure she will be up in the early hrs to get herself washed. I'm so angry with her, and not sure how to go about this any advice would be appreciated. The doctor said they cannot send carers in unless she agrees.

Re: First time carer

Posted: Fri Jun 24, 2016 11:37 pm
by jenny lucas
Sadly, you may have to tell the GP you now refuse to care for her AT ALL, and then he will have to set in motion (I think!) steps to safeguard her. This may entail sending in carers, or taking her into care. Others here will know more.

Your poor mum is now best off in a home, sad though that is.

Legally, if your mum has dementia, at some point (though I'm not sure when!), she will lose 'legal capacity' - ie, her mind will lbe deemed to be so frail she can't understand the implications of her choices/decisions (eg, her refusal to have care-workers in)

Does her GP give you any indication of her likely life-expectancy? If he judges it's a matter of months, you might be able to stick it out, and let her die at home with you, which would be lovely. Very sadly and grimly, though, the very elderly have their own timetable, and your mum may hang on for years. (I think my MIL will!)

I wish you as well as can be in a situation that really has no 'up side' alas.

Re: First time carer

Posted: Sun Jun 26, 2016 7:06 pm
by christina 17
Am I right in thinking that this is your home that your mother lives with you? Then you can invite who you like into your home.
In which case, would it be possible to invite a carer's team in, even one a day and to introduce her as your friend who has come in to help you?
When your mother sees her regularly or another care worker who may do the other days, she may be less afraid of strangers helping her and may allow them to help her.
Have you contacted the social services team for a needs assessment for your mother and a Carer's assessment for yourself?

Thinking of you at this very difficult time for you.

Christina

Re: First time carer

Posted: Sun Jun 26, 2016 7:17 pm
by joyce_1603
Hi Christina, yes my mum has been living with me and my husband, now for 2 years. We have had an assessment from Social Services and her doctor. Her Doctor said, unless she agrees for Carers to come in to help, they cannot come, in other words, if does not want cares there is nothing they can do. She agreed with the Doctor at the time of the assessment to have me help her, rather than the carers. But now she has refused my help, she told my sister on the phone that, yes, I was helping her to get washed, (My sister knew she wasn't). When I asked her why she told my sister I was helping her, when I wasn't, she said my sister was lying. Anyway, I am not offering my help now, there is nothing I can do, so she will either fall or get an infection and end up in hospital. I have requested a shower chair and bar rail, but I'm sure when I get it, she won't even go into the shower.