My mum in law 91 has had at least 2 mini strokes leading up to a major left brain stroke on nov 4th.
It started when she went into Guys for a partial knee replacement, being so fit and healthy that they took her. A couple of days later she “fell off the commode”. With hindsight that was when everything changed. She became reluctant to eat, vomited a lot, got severely constipated and all were put down to either known after effects of the epidural or a reaction to painkillers. After 4 weeks of hardly eating, water infections and basically neglect in Guys they sent her home, weak as a kitten, for me to look after with a full care package. the following day she had the major left brain stroke and went into Kings College hosp. She’s now in the neuro rehab unit at St Thomas hosp.
My question is whether she is likely to regain her lost memories. She was fully alert with a good memory before all this having been a top class silver service waitress all her life. Now, one day she knows me, the next she doesn’t. Some visits she seems ok, others she repeats the same question over and over. She currently thinks our cat is hers. Does this sound like dementia or could it be temporary?
Also, she did have some dysphagia but the speech therapist has now said she has recovered her swallow reflex and can swallow when she wants to. Trouble is she has become extremely picky about what she will and won’t eat. Jelly, cakes and ice cream are eaten but she will only take a couple of mouthfuls of less sweet foods before spitting them out. She ate a whole ice cream with cone and chocolate flake yesterday so it’s not that she can’t chew and swallow solids. She just doesn’t want to. She is weak from malnutrition We have explained over and over that she must eat and build her strength up to come home. The knee op was a total success but she’s too weak to walk. She nods and agrees, says she will eat, then doesn’t. She has never liked anything milky, creamy or yoghurt which rules out most supplements. She doesn’t like and won’t drink the fruity ones even though she seems to understand she needs them. This is not like her at all. Does this sound like brain damage from the stroke and do people ever come back from it or should we resign ourselves to having lost so much of her? Any advice or info would be welcome.
Sadly, it may be permanent. Don’t nag her about eating sensibly or proper meals, if she likes sweet things, let her have them. My mum had swallowing and digestion issues, survived mainly on Mr. Kipling cakes for years. As she was chair bound most of the time, she didn’t need a plateful of food, picking now and then was easier for her.
The hospital shouldn’t ever have sent her home until she was ready, the first time.
Don’t let them do it again.
Sadly, it may be time to consider permanent residential care with such high needs, it will have to be a nursing home.
Does she own any property or have over £23,000 in savings?
I suppose she’s not dissimilar to a faddy child. Kids get a surprising amount of nutrition from sweet foods and limited diets and will get a craving for something when their bodies really need it. Today she wanted a boiled egg - she’s never liked boiled eggs before.
Getting her strong enough to walk a little is our main goal. Then we can care for her at ours (we have the space). We promised long ago that we would never put her in a home. We all saw her mum plumbed in, tube fed, bedridden, confused, distressed in a home. A living hell.
Once she’s out of hospital I will be staying with her in her flat 24/7 for the 6 weeks of whatever care package she gets.
After that she will be self funded as she has a London flat plus substantial savings so we are thinking we would then move her to our house for “convalescence” and use a private agency for daily care visits. If she is still away with the fairies it will become permanent. Does that sound realistic? We know it will be hard work and involve some expensive extras (stairlift for a start).
No, not realistic, because it’s not just mum getting older, but you too!
Has mum had an NHS Continuing Healthcare Assessment yet? That’s free care on the NHS, but a postcode lottery I’m afraid.
We haven’t even been able to get an OT assessment for her knee op in October! They sent her home from guys with a full care package of 4x2 person visits per day having provided a bed without side guards, an overbed table, a Sara Xfer frame and a commode without any assessment of her flat because they knew I would be there 24/7. Then she had the stroke the next morning and is now in st Thomas neuro rehab ward. She has no other conditions or illnesses, normal BP, excellent bloods, no thyroid issues, a strong regular heart and no organ issues. The knee op was a total success.
The only things wrong with her are general physical weakness from malnutrition and a determination to only eat sweet things plus increasing memory loss and confusion. I’m not sure continuing care comes into it because there is no nursing element, just social care.
You are right, we are not getting any younger! We are mid 60s and both in excellent health though. There is no one else as I am the only female family member under 90 not already looking after a parent and she has always treated me as her daughter.
Apparently she walked about 10ft today with help which is encouraging.
Hi Judy,
Having her live with you will be hard, and will get harder, but it’s your decision to make.
Any aids such as a stair lift need to come from OT/ social care or her money.
Factor in respite care from the start so that you can have a break - whether she goes to respite or has live in care whilst you go away.
The malnutrition will be affecting her cognition as well as the stroke.
Many elderly people revert back to ‘nursery food’ things they liked as a child - so that’s worth a try.
Would she eat homemade soup? Lots of goodness can be incorporated into that. Since she ate the icecream would she trifle, chocolate mousse etc
Carers Uk has info on nutrition here The importance of good nutrition | Carers UK
There is info here on memory issues after a stroke. Memory and thinking problems after stroke | Stroke Association
It’s worth contacting the Stroke charity as there may support locally - meet ups, befriending etc
Melly1
Melly thanks for the links.
This happened to my elderly husband, and I should have realized the signs. He fell twice, and I went to a neighbor to get him back on the chair. In hindsight, I wish I called the ambulance then, but thought the reason was his arthritic knees. The next morning I saw him on the ground, immediately called ambulance who took him to the NHS hospital. He’s been there for several weeks, has not improved, and the assessment team says he needs long term nursing care.
He’ll be discharged in a week, go to another hospital where another team will assess him, go over his finances (my solicitor and I will be there also) and then find a placement.
My husband has worked for 40 years, paid his taxes, was a top executive, and it’s very sad to see him in this condition. I’m younger than he is, and have to think of my own future.
We had a good ‘nest egg’ and why should it be taken away with the annual cost of over £100,000 in a care home which I can ill afford after paying all the household bills?
We’re going to check on NHS funded nursing care as it’s not a matter of money, but need and care. He deserves this right along with everyone who has had a debilitating stroke.
It’s NHS Continuing Healthcare that you need to ask for, NOT Funded Nursing Care.
(FNC should only be paid AFTER a full CHC Assessment.) Don’t be fobbed off or bullied by the vultures circling who can’t be bothered to do their jobs properly because they think he has savings. I reclaimed £8,000 from Hampshire County Council, on mum’s behalf, because they hadn’t followed the rules.
Once your joint savings fall below about £46,000 his care should be free.
Is he receiving Attendance Allowance? If he is self funding, then he is entitled to receive this.
For full details, please contact our Carers UK helpline, and look at the Age Concern information.
If you need help or support, we are here for you. It’s an awful situation, and hospital visiting etc. is so very tiring.