Debora

by Debora
(Norwich, UK)

Hello,

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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