Problems agreeing on care for elderly mother

oicu812

I wonder if anyone could help with this problem. It is long, sorry.
My father died a few months ago and my 85-year-old mother has mild dementia and needs help. She is insistent that she does not want to leave the house, and since she does have a private pension and a large amount of capital, she could pay for some help.
My original plan to help involved myself and private carers popping in at intervals during the day. My sister lived far away and did not want to give up her job.
Then my mother had a short illness and came out of hospital much weaker than before. We agreed that she could not be left alone at night. My sister then announced that she would give up her job (she is unmarried with no children) and move in with our mother and be her carer. She assured me that she was happy to do this.
I have discussed this with my mother, as well as I can with her dementia, and she accepts that I can't be her carer but seems to take it for granted that my sister will drop everything and care for her. Also she will not accept the idea of strangers looking after her, even in her own home. She would not allow my father to employ anyone even though he struggled to look after her.
My sister needs me to provide respite care, but I am struggling to do this. She wants me to live in every other weekend. I have done a few weekends but it is affecting my family.
I live nearby with my husband and four children. We both work and are already struggling to cope with the demands on our time. I work school hours, then do 2-3 hours from home in the evenings. My husband's hours vary but he usually leaves for work at 4:30pm and returns in the early hours.
At first I left the children with my husband when I cared for my mother, but because he is sleep-deprived and basically nocturnal, he struggled to cope. The house was a mess and life was chaotic. The children missed me too and became badly behaved and sad, so then I started taking the little ones (aged 3 and 6) with me. I don't like that either since the family is split up, sleeping arrangements are inadequate and there is a cat (my sister's, not mother's) that defecates on the carpet (the house smells) and often screams at night.
When I complained, my sister became hysterical and screamed that she had given up everything and I would just have to put up with the problems.
So I suggested that my mother moved into my house for a few days every week, giving my sister a break, or even permanently, so my sister could return to her old life. It would be easier to fit in caring for my mother along with my own family if we were all in the same house. I thought my sister would be delighted but she got very upset. She also said that mother cannot leave her own home.
Then I suggested getting professionals in to provide the respite care. She said she was going to arrange this with a hospice. But they only provide short-term care at home for the dying, not long-term elderly care, so I don't think she means that. We need paid respite care that my mother would have to finance.

This is when I started to realise that I have a much greater problem on my hands then simply arranging care for my mother. Whatever plan I come up with, my sister disagrees with and insists that I live-in for the weekend. Last night (Sunday) she returned at 10:15pm and refused to discuss anything. I got home to a messy house, children still awake, no homework done. I can't abandon my mother but my family can't cope with losing whole weekends of my time.
Can anyone advise me? My husband and I have precarious jobs, do not get sick pay and have trouble getting holiday at short notice. I am sick with worry as my sister's demands are increasing. I am going to discuss this with the district nurse, but I'm not sure that she can help.

Jojo_the_Tightfisted

Sounds like the only thing you can say is 'NO'.

If your sister can't cope, which she can't, then she will have to take help from elsewhere. It's a hard job, caring in such conditions. Or caring generally. But that doesn't mean you have to do everything you are told to do, either.


And you need to have a serious word with your husband. Unless he works nights, there is no reason for him to absent himself from the family and fail to keep up with basic parenting responsibilities. He is either part of the family or he isn't.

Primrose

I desperately feel for you, having walked a not dissimilar path in the past. But it is clear that your health, your family's and your sister's well being cannot continue much longer along this route. Dementia is desperately sad both for the sufferer and their relatives but your mother's condition cannot continue to hold you all hostage to fortune much longer. Get your GP,s assistance to get Social services involved in a full assessment of her condition And needs. If full time live in carers are affordable, go for it. Otherwise you may have to accept your mother will have to go into care. This could be mitigated by her perhaps spending the odd few days in your house. But please do have courage to grasp this uncomfortable nettle before you find yourself heading for depression or a breakdown. Sometimes the line is a very thin one in these situations. You all seem to have done all you canto help your mother stay in her own home but if family relations are breaking down a care home may be the best answer.

ognum

Here are my thoughts:

The good thing is you and your sister both have your mothers happiness and care as a priority in your thoughts, you should be congratulated for that.

You and your sister are used to living very different lives, she has given up 'everything' to be with you mother.

You have a different lifestyle, you have other commitments which demand your time but also want to help your mother.

I think that you and your sister and your mother need to sit down with a mediator, it could be the district nurse, a care coordinator or social worker.

Your mediator needs to facilitate a conversation in which you discuss your mothers care and the way it can be managed. You both need to be open and honest about what you can give to provide care and what you can't, you need to both agree not to be critical of the others limitation like your children and lack of time and your sisters cat and feeling of being overwhelmed.

Once you have agreed what you can give and this does not have to be time at her house it could be managing her finances doing the grocery shopping, managing the garden etc etc. Then you need to look at the gaps that are not covered.

You then need to agree who will cover the gaps, this could be volunteer befriending help, charity help from someone like Age Concern (google what is in your area). it can also be paid care.

Your relationship with your sister and mother and your own family are paramount, this is not about who gives most or who does what it is about creating a team, you mother will die at some point and you need to be able to look back and say 'we all did what we could, not the same but what we could'.

Please look for the person who will be your mediator and work from there, I have done this many times and it does work!

BitterAndTwisted

To be honest, from what you have described, I'm not very sympathetic to your sister's situation. She made the decision to give up her job to be a full-time carer as I'm assuming that you weren't party to this covering-every-other-weekend business beforehand. If she needs someone to provide respite-care it must be on your own terms, and not hers.

whitewing

Your mother, your house for respite care is perfectly reasonable and achievable I think.

ognum

BitterAndTwisted wrote: »

To be honest, from what you have described, I'm not very sympathetic to your sister's situation. She made the decision to give up her job to be a full-time carer as I'm assuming that you weren't party to this covering-every-other-weekend business beforehand. If she needs someone to provide respite-care it must be on your own terms, and not hers.

While it is true she gave up her job we don't know her situation, why she made the choice and how she feel now she has given up her previous life.

It can happen that people make decisions thinking they are for the best and then regret what they have given up and lost and feel overwhelmed by the choice they made.

We don't have the sisters point of view here which may well be very different from the OPs!

ognum

whitewing wrote: »

Your mother, your house for respite care is perfectly reasonable and achievable I think.

If mother does have dementia as described this could be very confusing For her

Brighton_belle

Bottom line is, your sister does not get to dictate in any way shape or form, how where and when you offer care to your mother. She chose to 'give up everything' and is choosing to refuse to consider alternatives. This does not give her free reign over your life.
She is confusing her choices with 'there is only one way to demonstrate love and care towards our mother'. She clearly does appear to love and care but maybe has become overwhelmed.
You have young children that need you too: this situation could go on for several years - you can't not see your children every weekend.
The mediator sounds a very good idea - you are both stressed, anxious and tired I am sure by this turn of events. This would help have a calm discussion rather than one of mutually perceived criticisms and complaints.

Mojisola

Unless before your sister chose to "give up everything" and become your mother's carer, you agreed to cover every other weekend, then I don't have much sympathy for your sister.

I was the one who "gave up her life" to care for my parents and, when their care needs got more than I could cope with, I arranged extra professional help. I didn't have a tantrum and demand my siblings covered for me. It had been my choice, not theirs.

From experience, I would say that whatever people say when they are fit and well, need sometimes overtakes that in later life. If your mother needs more care than her children can provide - and, if she lives long enough for the dementia to progress, she will need much more intensive care - then a care home may be the best choice. Also, the longer it is left, the harder it can be for someone with dementia to cope with change.

My parents found it difficult to accept outside carers at first so I said things like - I'm finding the housework a bit too much so I'm going to get some help" - as it was me needing the help and not them, they were able to accept it.

With dementia (and elders who are just stubborn and won't accept the help they need), you have to learn to work round the problems rather than fighting about them.

mountainofdebt

Could your sister be concerned that if your mum did go into paid care, then the house would have to be sold and effectively she then becomes jobless and homeless?

or perhaps the rose tinted glasses have come off and reality has kicked in.

Regardless of the rights and wrongs of the situation, it would upset me to think my OH couldn't (or wouldn't) keep the house relatively tidy and put the children to bed at a decent hour in my absence.