Hello my first venture / topic etc. (Newbie) into Carers Online-quick background follows
I am 82 coming 83- Wife had a stroke some 3 years ago- physically reasonable but as a result of stroke- no speech- poor hearing-some confusion at simple tasks EG ( brushes the floor / teeth etc with brush upside down, just one of 101 confusing results of stroke) tries to help me with things, cooking cleaning, washing etc, but usually not safe to do so
Getting Carers Allowance and have had some support from local Stroke association reps.
Local doctors have done what they can over the 3 years , but not very helpful, especially during Covid
Had NHS speech therapy for a while, little progress- tried a private therapist for some 18 month - very slight progress then Covid, expensive any progress lost during Covid-so don’t think worthwhile and wont re-start
Most of the time I manage, but age taking its toll, has been extra difficult during Covid, live in the country, no friends calling etc.
Problems with myself-- Tired out, poor sleep, rheumatoid arthritis-- don’t intend but loose my patience and shout ( so unfair on her),irritable ( don’t think I used to be-) -my own medical problems, big list but OK ish.-- just down down in the dumps ??
I realise that life, is not fair and many many are in much worse-situations, but dark days- little to look forward to, age against me, but any advice re, speech, understanding, moving forward most welcome in that there must be many in similar situations
PS 33 years fireman /fire Officer/ senior, had all sorts of situations - so don’t think I give in easily
Bye Alan
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Time to get some help from Social Services.
Hi Alan,
caring is tough and you sound like you need some support and regular breaks. Its very different to a job (even a demanding job) because in paid work, at the end of your shift - you go home and someone else takes over.
Has your wife had a Needs assessment so that she/you can have some practical support? If your wife had care visits they could help her with simple tasks and take some of the pressure off you. (I realise you said you live in the country and this could be more difficult to arrange.)
Re her speech, has she been provided with communication supports, as she has not been able to recover much speech?
Is your arthritis affecting your sleep or is it your lowered wellbeing? A lack of sleep makes everything so much harder to cope with.
Melly1
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Hi ALAN_1909123. My mother has the same type of stroke. It is distressing to see a loved one in that state. Although, my mother isn’t getting the same type of treatment as your wife. I fact, the care home plus the medical professionals aren’t telling what is going on. Also, the care home in Salford are not communicative. My sympathies to you and your wife. Keep at it, help is out there. Try stroke.org.uk or Carers UK website.
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As your wife can’t speak, that’s a huge problem. Is she claiming Attendance Allowance and exemption from Council Tax on the grounds of SMI - Severe Mental Impairment?
Do you have any gauranteed time off? A morning or afternoon when someone is with your wife so you can relax?
Being a long term carer is tough. I’m 73, widowed now, my brain damaged son is in supported living but there is an endless list of jobs for me! For 2 weeks a year I escape to Greece with a friend, also a carer. We chill out and recharge our batteries, and tan, swimming every day. Bliss.
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I envy you your trip to Greece- been many times- done most of the Greek islands- we had some wonderful holidays then we tried Turkey even better-- try North Cyprus wonderful-yes Caring is quite a strain now for past 8 years and I myself now 87 year old- tiring- but what choice is there for someone you love—added worry of a Cancer in my wife- more hospital visits checks etc Ohhhh such is life
I - we have lots of friends and live in a small village so plenty of help and someone to sit for me if needed but try to limit such- although my wife can’t speak she soon lets me know
Thanks Alan
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Do you use any sign language? My son struggled to speak so was taught Mankaton at school. Most of the signs are the same as deaf people use.I was against this but he was always supported to say as well as sign the word. We own a couple of steam engines and go to rallies. We only learned a few basic signs, dinner, cake, biscuit, toilet, brother but if they were in the arena it was really useful. I have a long garden so if dinners ready I just sign.
Tried but she ( wife) couldn’t get away with it- tried a speech therapist for 2 years- she was excellent (expensive also) but no progress so gave up
Hi Alan_1909123. If speech therapy doesn’t work, then try other things such as mental stimulation. It can as simple as looking at pictures in books or magazines or simple things, just talking to her, giving her comfort when she is distressed etc. The important thing is not to let her mind stagnate. Simple things such as photographs is another thing to try. I’m currently doing this with my mother, when I well enough, I’ll visit her. Still full of this cold virus going around. I’ve just found out about this site, try stroke.org.uk or look up Helpful Materials-National Aphasia Association. Hope this helps.
Try just one sign at a time, always use the sign and say the word as you sign. It won’t be the first day, or even the first week, but it might just work. Just being able to tell you she is hungry, or needs the toilet, might save a lot of frustration. Maybe from your point of view start with what you would like her to be able to tell you the most. It took about 8 years for my son to talk, so I know how slow progress can be.
Amen to that. It’s frustrating sometime because you feel like you’re getting nowhere. Stick at it,
Thank you already in contact with the Stroke Assoc and have quite a bit of material from them
Bye Alan
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OK. No problem. Hope you and your wife are doing well. Keep in touch.