This is the tale about looking after my parents in their final years. I hope this helps those facing this difficult time. This is stuff that worked for me. It may not work for you but I hope it gives food for thought.
Mum and Dad lived about 150 miles from me, a little less for my sister. They still lived in the semi they had bought when I was 5 and all the childhood I remember was in that house. It was in a city. Dad was 3 years younger than my Mum and was generally regarded as the fitter one. They had a circle of friends, mostly based on the church they went to a bus ride away. They were interested in the music at the church.
When they were in their mid 80’s, Mrs A and I started taking them away for short holidays, as they were obviously finding it harder to get away alone. Neither of them ever learned to drive. We went to the Isle of Man, Borrowdale in the Lake District, Rothbury in Northumberland, and lastly to Snowdonia It was on that last holiday we noticed a step change in their condition. Mostly it was dad who had started walking a lot slower and shuffling. It was more difficult for them to get in and out of the car, and getting out of chairs. And any stairs were obviously difficult.
So when I got home I called my sister and said, bluntly, that they would be struggling to live in their house, and that they needed more support. We agreed it would be best if they moved nearer to me and my sister. We had suggested that before but had always hit a blank refusal.
But how to tell them? We hit on the idea of writing them a letter that they could read, re-read and discuss. We drafted a letter between us that went back and forward on the email. I printed it and posted it and awaited the explosion!
But they agreed. We found them a small house in a sheltered housing complex in the small town where I lived, and started the clear out of their stuff. That was not a nice job, editing down the minutiae of your patents lives.
The move was a military organisation, completely screwed up by me doing my back in. I took them to a B&B in the town where they were going to live while the rest of the family supervised the removal firm in the old house. Next day, while mum and dad watched TV in my house, the removal people did the move in. We did our best to make the new home as much like the old as possible.
But living close by we also started to see the difficulties they faced day in day out. While the elderly can put on a show of everything is OK for a few days, its far harder when they live half a mile away and you can just pop in.
We realised as they deteriorated slowly they needed more and more help. First a cleaner, then help with getting up, washing, especially Mum. We applied for and got attendance allowance from the government. Both a friend and Age Concern said we should not try and do everything. Mum and Dad had plenty of cash so that wasn’t a worry.
Dad had been diagnosed with reduced kidney function some years ago, and also was on Warfarin following a pulmonary embolism, again some years ago. That just ticked on nicely but kidney function reduced slowly each test. Dad was supposed to be on a low potassium diet, but Mum didn’t understand the metric units on the packets, so didn’t know what was stuffed with potassium, and what had a trace, so f it had potassium on the label, then she would not have it in the house. But this meant she didn’t get potassium. Not good.
It is common for partners to eat the special diet. We know a couple where one of them has a gastro-intestinal disease that requires a low fibre diet. But that means the partner also gets the low fibre diet, and its making her ill. They cant have high fibre stuff in the house because the sufferer will eat it, and the partner feels they should show solidarity with the sufferer, even to the extent of damaging their health. She gets by on sneaking the odd apple when she is out alone.
Then the kidney function dropped and it was decided he should go on dialysis. He was 88 at the time.
So off he trolled to the next town in NHS transport to have his blood changed 3 times a week. And the warfarin removed. So what had been an easy routine became difficult as the GP tried to keep his blood clotting levels right. Thats the trouble with dialysis. It just removes everything, not just the poison in your blood. I picked him up after work when I could so he got home a little earlier.
But we could not leave mum alone for 5 hours 3 times a week. While Mrs A would sit with her sometimes that was not possible every day. A friend said we should get help for this and not
And we failed to notice Mum was failing too. We now know that she was having occasional mini strokes, or TIA’s. So she was slowly losing her abilities.
We took them out for pub meals. Or to our house for a meal. They ate hungrily. Then they invited us round for a meal and they gave us one of the mail order frozen meals recommended by the social services, from Wiltshire Farm Foods. I was given a plate of roast turkey and a few veg and a roast spud. I looked at this meagre offering, then at Mrs A. Problem here. They are not getting enough to eat.
Mrs A made them some meals. Stuff like hepherds pie with added oats and stuff to fill them up with complex carbohydrate . A dish with enough for 2. But we found mum was making it do 2 meals.
They were getting under 1,000Kcal/day. Mum still had the wartime mindset of making do on not enough.
And drinking. The elderly hate drinking. Its coarse to drink large glasses of fluid, so they just sip small cups of tea. And drinking causes urination, which is difficult for them. But dehydration causes constipation, and also temporary dementia. Getting the elderly to drink enough would save a lot of health issues.
Then Mum fainted. Paramedics came. She had low blood pressure. (Not drinking enough – see above). So they carted her off to A+E while Mrs A and dad followed in the car. They kept her in overnight, found nothing so they sent her home. Ambulance crews will always recommend hospital, because if they don’t and the patient deteriorates, then theyget in troubl. A+E is not a good place for frail old people. And taking people out of their familiar environment causes problems when they go home. Modern ambulances carry a bit of kit than can do ECG, Blood pressure, blood oxygen, pulse. If the patients numbers are about normal, then why do they need A+E?
Many elderly with memory issues will do things by rote and can manage day to day. Disrupt that and they will become confused and anxious and it can take a long time for them to recover. So dont be bullied to send them to A+E unless there is a real injury that needs urgent medical attention. Difficult call. Never sent her to Hospital again.
Dialysis was bad for Dad. We managed to get the GP to drop from 3 to 2 sessions a week to let his body recover from a debilitating procedure.
Ad he deteriorated, he started to swear. I never heard him swear before. He was confused with the repeat prescription system, would not keep a buffer stock of is repeat drugs, and one day swore at the pharmacy staff on the phone. The pharmacist was threatening not to dispense for him again but we managed to arrange things so he would. Lots of sweet talking.
I think he was a scared old man seeing his control on his life slipping away, his wife deteriorating, the things he loved, especially classical music, becoming difficult. He was also going deaf but refused to wear hearing aids. So he missed much.
Then the boiler in their home failed one morning. It just needed re pressurising like combi boilers do. Dad wanted his wash and shave, so the cleaner brought him some hot water. He swore at her, using the C word. She walked out. So I had to bollock my own dad. We also became aware of some verbal abuse towards my Mum. But she didnt support me tackling Dad about his swearing. Loyal wife.
There was the continual tension waiting for the next crisis. The falls, the faintings, the main circuit breaker tripping while dad was on the stairlift. Mrs A used to hear sirens an think ‘is that Mum and Dad?’ We lived on the route from the ambulance station to their house… And Mrs A broke her arm.
Then one night I noticed his eyes were drooping in a way they never had before and his voice sounded funny. The GP thought stroke so insisted he went to A+E. But it wasn’t, it was an autoimmune disease attacking the muscles in his head, neck and chest. More drugs. Drugs that the dialysis promptly removed. He had been sent to a large teaching hospital some 20 miles away because of the warfarin and kidney complications and they picked up on this rare disease. Would they have found it at a smaller hospital without the specialist staff and experience?
The hospital consultant had the discussion with us about caring for Dad and Mum on the longer term. I think that depressed Dad, who feared going to a care home. I believe he gave up on life after that.
He went home for a while then back to hospital as he deteriorated further. They say 1 disease you are OK. 2 is difficult, 3, you cant manage to control that. 6 weeks after diagnosis he was dead.
We kept mum distracted while we took all Dads clothes out. Charity shop. They even took washed underwear to go in the rag bag for recycling.
So we thought Mum staying at home wasnt an option. We went round the local care homes. We went at mealtimes when they were stressed to see how they coped with an extra task. We eventually found one who would have a vacancy in 4 weeks time (They had decorators in)
We needed 24 hour carers in for Mum until her care home place became available. Be very careful about that. Make sure you know how much you will be paying for this. Get quotes from various care suppliers. Remember, the 24 hr live in carer need 2 hrs off a day – either a family member or another carer will need to be there for this.
We got her to the care home and moved as much of her stuff into her room there as possible. But we had to go through all the stuff left behind in the house again and chuck out the unwanted stuff. Stuff my parents treasured was sniffed at by charities and was basically junk. Most went to a house clearance firm. I had to spend a day shredding loads of old papers. Why had they kept 15 yr old bank statements?
The bank were great. A death cert got all their bank accounts, ISA’s etc (all same bank) converted from joint to just Mum. The registry office had a form to close down government accounts like pensions. A few phone calls sorted the utilities. Thankfully my parents has wills and powers of attorney in place.
I am not sure how mum felt about Dad dying. Se had not had it easy on his last years. But they had been together over 60 years. But she had 2 photos of him above her bed. One in his RAF uniform in 1944, the other was one I took a few months earlier.
So I went to see Mum once a week for a few hours. She was outside her familiar surroundings and routine. The care staff did all they could to make her comfy. They encouraged her to walk (with a zimmer) Eventually we got her to go in the communal room and meet people. She made a friend with a man in there, and they sat together, he doing colouring by numbers, mum painted – she liked watercolour. But mum, with her degraded mental abilities thought where was a spark of affection there that was not requited. Oh dear.
We took Mum out for lunch once. Since she had gone into the care home her ability to walk had deteriorated so I was really fearful of dropping her between the car seat and her wheelchair. But no matter. We could have meals in the home with her. And we did, including a Christmas dinner. But the care home didnt do proper coffee, just instant. So a carry out cappuccino always got a smile. And for Christmas dinner we took a cafetière and some ground coffee for post dinner coffee.
But this time was bad for me. I was working full time with a long commute across country. Then once or sometimes twice to the care home during a weekend. No Alexsandr time hardly.
This is when tensions between Mrs A and my sister bubbled up. Mrs A saw me driving myself into the ground. She rang my sister and begged her to take some of the strain off me. My sister refused blaming pressure of work. I knew nothing of this. But the tension between them is still there 3 years later. Tensions between family members in this situation are very common. Its brewing between my daughter and her sisters in law over her mother in law who lost her husband suddenly 8 months ago. It seems looking after the elderly always falls on one child, not all equally, and that breeds resentments.
Then Mum stated to fade. It took 6 weeks for her to fade away. Ill give the care home staff their due. She was always clean. Her hair was brushed. She often had a little make-up on. Someone was doing a manicure and painting her nails. Mum smiled about meeting God with red nail polish!
The carers knew she was going. They know signs of a body shutting down. Then I went for half an hour each evening. She knew who I was each and every time.
Then one morning we got the call.
So what is left
well they left me a fair whack of cash which has made life easier for me. But I miss them so often.
They left 2 children, and 3 grand children. And others in a complicated family who they loved also.
The whole episode has soured my relationship with my sister – and Mrs A is very wary of her now. But my sister has the problem all over again with her mother in law.
The whole 4-5 years left me very weary even though Mum died 3 years ago\. But I have had other bad stuff to cope with since.
I hope this tale helps those going through the elderly parents phase in their lives.
© Alexsandr too 2018