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The Dementia Diaries – Chapter Seven Another Birthday

It’s my Dad’s eighty-ninth birthday. Considering he had a heart attack a year ago he is doing well. He is still doing the most wonderful job of looking after my mum, never complaining and always cheerful. I try to see my parents on their birthdays but this year I am very pushed for time as I have an appointment in London. I pop in at around 11am with cards and the very unimaginative gift of an Amazon voucher. Dad recently discovered Amazon and it has been very useful as it is now near impossible for him and mum to go to the shops. Dad answers the door and I can see Mum in the kitchen already looking confused. She hasn’t had breakfast yet, Dad has told me that she is sleeping more now. I say Good Morning to her and point out that it is Dad’s birthday. She smiles and nods but I can tell she either couldn’t hear me or didn’t comprehend what I had said. Last year Dad bought himself a “to my husband” birthday card and got Mum to sign it but he hasn’t done that this year. I feel dreadful, Dad hasn’t got a card from Mum. I bought cards for my children to sign but forgot about getting one from her. Even those of us without dementia can’t remember everything all the time can we?

Dad opens the cards and I am very touched to see the beautiful message my twenty year old daughter has written for him. He has quite a few cards from old friends who he keeps in touch with. Mum looks at the cards, commenting on the lovely illustrations, but makes no mention of the fact that it is her husband’s birthday. The cards go on the window sill along with some Christmas cards that should have been taken down months ago and cards from Mum’s birthday back in February. I suggest putting some of the Christmas cards in the recycling but Mum won’t hear of it.

I tell my parents that I have a GP appointment about my migraines and Mum starts to suggest that she attend along with me. I have to tactfully decline her offer. She then begins her usual routine of asking about their next door neighbours, she asked the same question maybe five or six times within half an hour. The neighbours are in their nineties and the man, who is suffering from Alzheimer’s disease recently had to go into a care home as his wife could not cope any more. My Dad explained this fact to my Mum at the time and, although she doesn’t seem to retain it, something has stuck with her because she keeps asking where he is and then saying “oh no, they’ve put him away”. I hope she doesn’t say this to the man’s lovely wife who has been struggling for a few years now and desperately needed some help. In fact she has just had a nasty fall down the stairs and is in hospital herself. “Put him/her away” is a phrase my aunt uses as well when talking about care homes. Her good friend has just died after just two months in a home. She had several bad falls whilst a resident but the cause of death was related to her not taking her daily heart medication. Surely that is something the nursing staff should have been overseeing? Isn’t that partly why the cost of her care was in excess of £8,000 per month?

My parents managed the short walk into the village and had a coffee in the cafe and that was the extent of Dad’s birthday celebrations. My brother visited later in the week and a childhood friend of Dad’s popped in so it wasn’t a complete non-event. Here is hoping he will be here next year to celebrate his ninetieth.

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash

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The Dementia Diaries – Chapter Six Heart Attack – Part II

My dad had his heart attack on a Sunday evening and, thank goodness, was recovering well in hospital. My parents had been happily married for over seventy years. By the Tuesday morning, not even forty-eight hours later, Mum appeared to have forgotten he had ever existed. It was absolutely staggering. She slept very late on Tuesday morning and came downstairs, not seeming in the least surprised to see her daughter in the house instead of her husband. She was in such a cheerful mood, chatting away about this and that. Then my brother popped in straight from the hospital. He sat in Dad’s chair. Mum kept looking at him with a puzzled, worried expression. Then she said “it’s a shame my son died isn’t it?”. Thank goodness my parents have never lost a child. I tried to explain that it was my brother sitting in Dad’s chair, that nobody had died and that Dad was still in hospital. She needed reminding she had a husband. My parents don’t have single framed photo of themselves in their house and I don’t know where the photo albums are kept so I couldn’t show her a picture. She kept looking suspiciously at my brother, studying his face, and I thought how frightening and disorienting it must feel to not grasp what is going on or to recognise your own children.

Mum then kept asking me if she and Dad had been happy. I don’t think it is an exaggeration to say they have had a wonderful marriage. The sort of relationship where both people really love and look after the other one. Since Dad retired they do everything together. Dad still buys Mum flowers every single week. I told Mum all of that and she seemed pleased. An hour later she kept asking “did I have a husband?” over and over though so none of this information had been retained. I took her back to my house for dinner with my family and then we returned to my parents’ house and settled down for bed. Mum looked heartbreakingly frail in her nightdress.

Wednesday, Mum woke up at the crack of dawn in a foul mood. I was trying to do the washing and cleaning but everything I did was wrong. I set Mum’s place at the breakfast table but it was in the wrong position and she made me move the placemat and cutlery even though it made no difference. Didn’t I know she had two cups of tea not one? She can be very forceful, far more so than pre-dementia. My colleague rang to check in on me and I got quite choked up. I almost never cry but, no matter how old you are, having your mother constantly criticise you is very hurtful and I had hardy slept for a couple of nights. Mum didn’t mention Dad at all that day until I rang the hospital and spoke to him and my brother. I put the phone on speaker and they had a little chat. Once it was clear that Dad was going to recover we made the decision that wouldn’t take Mum to see him at the hospital. We knew from experience that would get very confused and distressed when we reached the ward. This happened when we visited my uncle, she thought she was being left there by herself and became quite distraught.

On Thursday Dad came home. Mum was over the moon to see him. Absolutely over the moon. She kept kissing him and telling him how much she loves him and how much she had missed him. I didn’t tell Dad that she had forgotten his very existence for a couple of days. Dad looked very pale and tired but happy to be home. He is the sort of person not to make a big fuss over anything. He is taking part in a trial where elderly patients are treated with medication rather than having a heart bypass. In the year since his heart attack he has not once seen a cardiologist or had any follow up other than a chat on the phone with a nurse. He is very organised with his medication and seems to be doing well. For the first week or so I went over every evening and helped with preparing and cleaning up dinner and with the housework. Now I pop over and help with the housework twice a week, especially the washing because there is now so much of it, sadly. Dad still does almost everything though and his kindness and patience is extraordinary. I have never once heard him sound impatient or irritated with Mum. For now, we are all muddling along together.

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash

The Dementia Diaries – Chapter Two, Heart Attack – Part I

It is ten o’clock one Sunday evening and I am just about to go to bed when my phone starts ringing. I see that it is my parents’ number and hurriedly pick up. My mum unfortunately can no longer manage to make a telephone call so I was expecting to hear Dad’s voice. I was certain it must be some sort of emergency to be calling this late. There didn’t appear to be anyone on the line but then I heard Dad say very quietly “I’m having chest pains”. He seemed to be on the other line to the emergency services. Now, Dad usually keeps his Nokia mobile phone in its box in the back bedroom, he occasionally charges it if he is going to out somewhere but I don’t think I have ever once been able to reach him on it. The fact that it was charged and within reach this particular day was very serendipitous.

My parents literally live a few minutes away from me so I pulled on some jeans over my pyjamas and my husband and I rushed round there. On the way out I grabbed the keys to their house. When I arrived Dad was sitting back on the sofa, ashen faced and mum just looked frightened and confused. Dad confirmed that an ambulance was on the way. He was clearly more worried about what was going to happen to Mum than he was about his own situation, it was really very touching. I assured him that I wouldn’t leave Mum on her own for a second and I could see him visibly relax. He asked me to put together a bag for him to take to the hospital. 

The ambulance still hadn’t arrived after forty-five long minutes so I had to ring again. Then they sent two, what a waste of resources.  The paramedic in charge wired Dad to a portable ECG machine and assured him he wasn’t having a heart attack – this was completely wrong as we would discover when Dad was examined by a doctor. We decided that it would be better if I stayed at my parents’ house with Mum and my husband went in the ambulance with Dad to the hospital. I was very conflicted about this because they have been married for sixty two years and it felt wrong to keep them separate at this time but I also knew that looking after Mum would be a job in itself once we reached the hospital and that she would become difficult because she would be away from her familiar, safe home environment.  It was a cold night, very late and Mum was already understandably becoming distressed. Before the paramedics had even left, she had completely forgotten what had happened and kept asking who the strangers were in their house. 

During the next hour Mum must have asked me where Dad was twenty times. It was incessant. I kept gently explaining and she would look frightened and then repeat the question. I was almost sick with worry myself. My husband was very good and kept me informed and within a couple of hours it became clear that Dad was going to be OK. I spoke to Dad before going to bed and he just wanted to know that Mum was alright.  He said that yes, he had a small heart attack but that the pain had subsided and he was OK. The doctors were going to speak to him the following day about treatment options. Mum and I went off to bed, I slept on my childhood bed under the red Habitat duvet cover I had chosen when I was twelve.  It is probably a collector’s item now!

It took Mum a long time to settle down for the night and I was beginning to lose hope of getting any sleep but she eventually nodded off. I was trying to process everything that had happened. One minute we all seemed to be muddling along and then the next, a massive spanner has hit the works. What would happen to Mum if Dad couldn’t look after her anymore? She certainly couldn’t live alone and I don’t have a spare bedroom. and I have a job, how would we manage?

The next morning I was awake at the crack of dawn and decided to tackle the laundry mountain that poor Dad had been dealing with on a daily basis for the past year or so. Unfortunately incontinence is a symptom of dementia and Mum had recently begun to have problems in this area. She refused to use any products designed to help even though the District Nurse had supplied some, again the “nothing is wrong” approach to things. There was washing all over the house, on every radiator. Dad would consider it far too extravagant to use the tumble dryer sitting, unused, in their utility room. I was just folding up various items of clothing when Mum appeared and demanded to know what I was doing. She would do the laundry she insisted. Even at the age of fifty something, I find it heard to assert myself with Mum and I pretended I hadn’t heard. She then seemed to realise that it was odd that I was even there at all and asked where Dad was, I explained and she nodded and asked again. She would go onto to ask me continually throughout the day. 

During the afternoon my oldest son drove over and we managed to manoeuvre Mum into his car and take her back to my house. I then cooked dinner for everybody. Mum is very sociable and thoroughly enjoyed being made a fuss off and as we left she said “I’ve had a lovely time”. Bless her, she really seemed so happy. Back at her house she announced that she would be staying up until midnight. My heart sank, it was only eight o’clock and I was already exhausted. I rang Dad who said he was feeling much better and told me that he had agreed to take part in a medical trial, treating elderly heart attack victims with medication rather than a bypass.  Fortunately I managed to persuade Mum to go to bed at ten o’clock and, after much faffing about, we both settled down for the night. Just before her head hit the pillow she asked me to knock on the neighbours doors and tell them that Dad had died. My heart sank. This was not going to be an easy few days…..

 Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash