Hi all , any advice welcome

[Allotmentgirl]

I care for my elderly mother who has Alzheimer’s and vascular dementia, she is determined not to go into a care home either for respite or full time . I am the only family member who lives nearby so l bear the full burden of responsibility l have power of attorney for finances and care, I have brought in care for 1hr every morning and 1/2hr at night but mum is giving them a hard time refusing to get showered although she cannot manage herself, we have had a stairlift fitted as her physical health has deteriorated and she can no longer climb the stairs, she also has macular degeneration and her sight is poor , she is incontinent of urine and can have bouts of diarrhoea, we have purchased a waterproof bed and bedding so everything can be cleaned, mum just throws her urine soaked pads on the bedroom floor she doesn’t bag them although she knows bags are there she has lost the ability to care ,the house smells although we have the proper cleaning supplies.
I feel like I am firefighting and the whole situation is getting beyond what I can cope with my mental and physical health is struggling, if I fall everything will come crashing down and I can’t allow that to happen I have my own family to think of, any advice please.

 

[Gosling]

Hello @Allotmentgirl and welcome to this friendly and supportive forum.

I am so sorry to read of your Mother's diagnosis, and the challenges you are now facing with her care. Being this only near family member to provide this support is extremely difficult too. I do feel for you, and you have your own family and health to prioritise too.
By what you say, to be totally honest, it does sound as though your Mother now requires a residential care setting to ensure she is safe and clean. The problems you face at the moment are unsustainable and sadly will only get worse - I think you probably know that.
I would certainly suggest to get Social Services involved with a care needs assessment - she is an elderly vulnerable person, who clearly is unable to look after herself, even with the 1 and a half hours of care that you have brought in. To me it sounds as though you are at the stage of 'it's what the person needs, rather than wants' that is paramount now. And also, for the sake of your health needs, I would suggest you should consider getting this moving as quickly as you can. The following link may help:

The care needs assessment: support for people with dementia

This page looks at how a person with dementia can get a care assessment, who does an assessment, how they are carried out, who makes the decision, and tips for making the most of the care needs assessment. It also explains the eligibility criteria.

www.alzheimers.org.uk

 

[Chaplin]

Hello @Allotmentgirl and welcome to the forum. Sadly as the dementia progresses the needs of most people require more than one person. Your mum may not realise the impact of throwing her pads on the floor, personal hygiene and the need for more support.

My mum also said she didn’t want to go into a care home but after a bout of delirium and a long hospital stay, the doctors told us that her needs were to great to be safe at home. My dad was her main carer but my sister and I although working at the time, was providing a lot of support to both.

Many here will tell you that sometimes we have to do what is right for the person we care for, not always want they want.

I would try and get your mum some respite with a view to making this a permanent placement if you think the home can look after her needs. Don’t beat yourself up about this, it takes a team of people to care for someone with dementia and things will only become more challenging! Hopefully this time will give you some headspace to think clearly about just how much more you can give, be honest and don’t be guilty that you may be going against her wishes, it’s her needs you must focus on.

Has your mum had a care needs assessment? If not contact your local social services department and ask for an urgent referral. Explain how your mum is on her worst days, don’t worry about how bad that may sound, but don’t sugar coat anything or they will assume you are coping.

Take care and keep posting for support,

 

[Sarasa]

Welcome to Dementia Support Forum @Allotmentgirl. This is a very friendly and supportive place. Having said that you are probably not going to like what I'm going to say next.
It sounds to me as though it is time for your mother to move into care. She may not want to, but there comes a time when needs outweigh wants and it sounds as though you've reached that stage. For instance, I don't think that your mother can't be bothered to bag her incontinence products, she has forgot what she is supposed to do.
If your mother is self-funding, having assets of over £23,500 I'd start looking for suitable homes. Homes are all different, and not all homes will be right for your mother. If she would need help from social services contact them for a new assessment. They may well suggest more visits rather than a care home, and that will need to be tried, but it really does sound like she needs a team of people to care for her now.
I assume you have Lasting Power of Attorney? If not try and get that sorted straight away.
I see others have posted very similar things while I've been writing this, but we've all been in similar situations and in the end a care home was the best solution.

 

[Allotmentgirl]

Thank you for your replies I do know that mum would be much better cared for in a home but she does not agree, to her there is no problem , and I also realise that by doing everything I am allowing this to carry on to my detriment , mum even refused respite care so how on earth do I persuade her that a care home is best, she is self funding.

 

[Sarasa]

I think it might be an idea to have some possible homes lined up. It might be tricky moving your mother into care now, but if there was a crisis, for instance if she ended up in hospital after a fall or was found wandering it would be good to have something lined up. The other thing you could do is invent a reason for why she has to move out of her house for a bit and move her into respite with a view to becoming permanent. That is more or less what I did with my mum,

 

[Weasell]

You have received such good advice from the other posters I can add little to help.

But please don’t judge your mum too harshly on the smelly pads.
Something happens in the brain with dementia and it loses its ability to detect bad smells, as if the processing section of the brain works not at all.
You could put that pad under her nose and she would say ‘ what is wrong with that’? understand it’s not your mum’s fault, it’s the progressive brain disease your mum has been diagnosed with.
@Sarasa offers you such good advice.
Do your homework now, and wait until she is admitted to hospital. It will come sooner than you realise, then hospital to care home will be seamless.
You sound a wonderful daughter, take a deep breath and wait. It will come right for you.

 

[Allotmentgirl]

I do not judge my mum I know she is ill ,,just feeling overwhelmed and a little lost I appreciate your advice, thank you.

 

[Weasell]

I do not judge my mum I know she is ill ,,just feeling overwhelmed and a little lost I appreciate your advice, thank you.

I am sorry !
you are not judging your mum, it is me that was Judging mine.
it is just it took me such a long time to realise my mum could not smell the same things I could!
I was thinking ’ you must be able to smell this‘ but was so slow to realise that she couldn’t .
I had thought of dementia as memory loss etc but I had no idea about all the other problems if causes.
It a painful learning curve. It is also so much worse when you have more than one person depending on you.
You sound like you go above and beyond for your mum, I send you strength so you can keep up your good work.

 

[Scarlet Lady]

@Allotmentgirl , I’m so sorry for what you’re going through. But it seems to me that your mum has now lost capacity to understand or make decisions about her future. Neither she or you can provide the care she needs at home. She needs to go into residential care. If she is likely to be self funding, you can start looking around at available options. As others have said, even if it’s recognised she no longer has capacity, it may take a crisis for you to get her the care she needs.