by Debora
(Norwich, UK)


My mum aged 75 had a severe stroke 7 months ago; this has left her needing 24 hour care. She is partially paralyzed, cannot speak, but is responsive.

She understandably, often exhibits frustration and irrational behaviour; however she can understand what you say, and occasionally answers you. She is often depressed and emotional, but this can change within seconds to delight.

At times she rambles nonsense, or sings bizarrely. She can walk a few feet with a stick, but tries to do this without warning, she does not seem to be aware of the fall and tripping dangers around her.

She lives at home with my 78 year old father, who has emphysema and is trying his best to cope and nurse her. They have carers who sleep in from 10pm until 7am, 7 nights a week and 3 hours a day of care support for washing and changing.

Dad has 6 hours respite per week, he is alone with mum the rest of the time; sometimes he has to change her early morning, sometimes they both end up on the floor and cannot get up, so he calls a neighbour for help.

He is devastated and exhausted.

He sometimes looses his temper with mum when her behaviour is irrational; I have witnessed him shout at her, this scares her, but she cannot retaliate. This is not deliberate on dads part; he is at his wits end.

My sister lives close by and call every night after work; she stays for two hours, cooks and cleans for them, and visits all weekend. She often takes mum out; she also tries to provide social support for dad who is very isolated.

My sister recently had a hysterectomy, and had 6 weeks off work, but still continued to do all the above. Dad rings her three
and four times a day.

I live 300 miles away; I am a single parent of two young teenage boys, and teach full time. When mum first had the stroke I spent two weeks up there, now I can only go in the holiday period. I have long holidays, and so can offer good, but lumped together periods of respite for dad and my sister.

I take over most things when I am there, whilst trying to look after my sons. I return to an increasingly stressful job exhausted. I am off work today by order of my boss who has recognized my stress and exhaustion.

It is heartbreaking watching mum and dad
deteriorate, but they insist on staying in their home. My sister and I want this too, but I am beginning to wonder if sheltered housing or a care home may be the next step.

I realise I need to take a step back because I need to remain healthy to care for my sons, they have no other family. I feel guilty making this decision; it is hard on my sister, but my boys need me.

I am beginning to feel that mum and dad should perhaps go into a nursing home; but if any mention of this is made dad reacts angrily ( as he always did when mum suggested they may need help in the future; she was his carer before her stroke).

In the summer, mention was made of her going in a nursing home and she immediately stopped eating, refused medication and spiraled into rapid depression.

This is such an unexpected situation; I would never have thought this could happen to my family. I am also scared for my own health now and worried about the future of my boys.

Please can anyone offer some supportive advice? Thank you...

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Help with 24 Hour Care
by: Anonymous

If your loved one can get financial assistance to be in a nursing home, this may be the best/safest option for everyone...

Some of us are not fortunate enough to have Medicaid assistance to get help with care whether it be at home or in a facility..What to do?

Advice for what it is worth
by: Anonymous

Hi Debora,
I have been through a similar situation, and in hindsight, it is very selfish of your parents to depend on you and your sister to such a large degree.

With their limitations now, they need to get out of denial and learn to live with assisted living, not in their own home anymore. The level of care required is just too high for them to remain home and rely on others to care for them, without compensation.

It is sad and unfortunate, but they could go on like this for years; and there comes a point where people who are dependent on others do not any longer get everything they want.

A stroke victim usually has limited impulse control, and this means they are very demanding. As long as other people cave to their impulsiveness, those people will lose all hope and no longer be good care providers as a result, in my experience and opinion.

As tough as it sounds, your parents need an ultimatum. I believe you and your sister have been placed, by your parents, in an unsustainable position. I would do whatever I could to change it as soon as possible, and you and your sister must be a team and unify to influence your parents to relinquish their independence, since it is already so badly diminished.

They may not realize how they are affecting you and your sister, and it may get ugly for everyone to move them to assisted living, but the level of care required for the long term is not justifiable in the home setting.

I hope you are able to find them suitable alternatives and impress upon them the importance of moving to an assisted living environment. Present them with options and tell them there are not other options anymore.

Slowly pull your support from them without abandoning them. Get a social worker involved. You need help.

by: Anonymous

It's amazing what we have to deal with isn't it? What happened to our lives? Why do some people get off the hook seemingly?

It seems from an objective view, that everyone is exhausted in your situation. Assisted living facilities are designed for this purpose.

I hope things work out for you all.

Keep your chin up...

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