Category: THE DEMENTIA DIARIES

The Dementia Diaries – Chapter Nineteen – It’s Only Going To Get Worse

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I’m sorry for the rather depressing title of this post but there is no point pretending life is all sunshine and rainbows when it really isn’t. I went to my parents’ house on Sunday and noticed that the wastepaper basket in their bathroom was overflowing with, what looked like clean cotton wool balls, hundreds of them. There were unopened bags of cotton wool balls on every surface, maybe twenty of them. I had arrived at 11am and Dad told me that Mum was getting dressed. I vacuumed everywhere and put some washing on the line, there is always washing. Aftern an hour had passed I went upstairs to check on Mum. She was in the bathroom dabbing her face with two cotton wool balls which she dropped into the wastepaper basket. Then she took out two more balls and dabbed at the same place on her face. I didn’t want to startle her but I couldn’t make her hear me. I watched her doing this about five times then I felt guilty for spying on her so I tapped her on the shoulder. As usual, she seemed irritated by my visit and immediately asked me if I was going home. I tried to gently coax her downstairs but she shrugged me off and kept dabbing at her face with more and more cotton wool. Dad came upstairs and led her away to eat breakfast even though it was now lunchtime.

Today I picked up some medication for them. When I pulled up on their driveway I noticed a woman watching me. She came over and said, and I quote, “I knew your mum from church. I have been meaning to pop in and say hello for years but I’m always too busy I’m afraid” I have written before about how the vicar has never once bothered to call in on my parents despite Mum being a regular churchgoer before dementia and here we have another useless churchy person. Sorry, no offence meant but honestly, how was I meant to respond? I mumbled “have a good Christmas” and knocked on Mum and Dad’s door. Mum looked unbelievably frail, as usual dressed in clothes more suitable for August than December. She won’t wear a thick cardigan or jumper so the heating has to be on full blast all day.

My oven is broken and it is unlikely that it will be replaced in time for Christmas now, it is an unusual size and British Gas are going to source one for me. I am already dreading cooking Christmas lunch at my parents’ house with Mum telling me to go home every two minutes and demanding to know what I am doing. Even though I am fifty six years old, being shouted at by my mother still upsets me, I can’t explain it. Mum has shrunk to a tiny figure but she can be very intimidating and will stare angrily at me without blinking or looking away. I have actually lost sleep over it which is ridiculous. It will be eleven years on Boxing Day since I first noticed Mum asking the same question over and over again. I am feeling pretty trepidatious about what is around the corner. How much worse can things get?

Thank you for reading

Samantha

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The Dementia Diaries – Chapter Eighteen – Hospitals and Home Visits

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It’s been some months since I wrote a Demetria Diaries posts, we are still muddling along. My dad has employed a carer from an agency to come in twice a week for my mum. Unfortunately Mum won’t really allow her to do much but Hannah, as the lady is called, does wash her legs and sometimes Mums hair.

Things have deteriorated considerably in the past couple of months. Dad had a corneal graft some years ago and his yearly check up at Kings Hospital in London was approaching. We arranged hospital transport and agreed that, as happens every year, I would sit with Mum while he went to the appointment. When I arrived at my parents house my Dad looked so ill and frail that I couldn’t let him go into London without me so my lovely daughter literally ran round to their house to stay with Mum while I went in the ambulance. Dad has had some stomach trouble lately but a CT scan and blood tests haven’t found a cause for this. The clinicians decided Dad is too frail for a colonoscopy. On this particular day he looked pale and exhausted.

Kings is a huge hospital to navigate and we were kept waiting for hours. The eye clinic receptionist seemed annoyed that we were keeping the return hospital transport waiting and kept asking irritably when we would be finished – as though we had any control over the situation. You would think that the reception staff would take one look at Dad and wonder if it was really reasonable to keep an elderly patient, who had travelled a long way, waiting for hours after their appointment time. I could see Dad was becoming quite anxious about not being able to get home so I was pleased I had gone along with him. I told him we could pay for a taxi if need be. Eventually the consultant saw Dad, said all was well with his eyes and we made our way to the hospital transport hub. We were told nothing was available as it was so now after 6pm but that they would organise a taxi, at no cost to us. While we were waiting a couple from our village came over to say hello, what a coincidence. I didn’t know them but they recognised Dad and asked how he and Mum are getting on. I was hoping they would offer us a lift home but they, like me, didn’t fancy driving in London and had taken the train. Dad was too tired to walk to the station and take a long train journey, it is SO many stops. Eventually our transport, a shiny black Jaguar SUV, arrived and after a slow drive through City traffic we got home. My daughter said my mum had been a bit of a handful but she managed admirably.

Since then Mum has spent most days asleep in her armchair waking only to eat and, if she gets there in time, use the loo. She is always cold, the central heating is permanently on and she is wrapped in a fleece blanket. Mum does not welcome visitors and continually tells anyone other than Dad to go home.

My parents’ lovely next door neighbour died in his care home after a bout of pneumonia, he was ninety four and had advanced Alzheimer’s disease. Dad was very upset by this, Mum oblivious. This mild mannered, gentle man had to go into care after becoming aggressive towards his wife, what a cruel ending for him.

Mum has a nasty eye infection at the moment complete with an enormous stye. Her third infection is as many months, the GP has visited her at home a few times now. She continually says she wants to see her father who died in 1974. She is unsure of who I am. The speed of her decline is accelerating. Despite this, she gets up every day and gets dressed in smart trousers and her usual little T shirt and cotton cardigan. I have seen first hand the enormous physical and mental effort that this takes but my parents are not the sort of people who have ever sat around in their night clothes They just get on with things without complaining. They eat breakfast at a table my dad has laid with a cloth, table mats and cups and saucers. Dad says he sometimes feels he is running a hotel for one. I really admire them both. I think my Mum is still with us because of the devotion and care my Dad has showed her.

Thank you for reading

Samantha

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The Dementia Diaries – Chapter Seventeen, The Care Agency

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Dad and I looked at the list of care agencies given to us by the visitor from Social Services. Most of them were located more than fifteen miles away. There is a local agency but I did not want to use them because I have seen one of their carers in the local park screaming abuse at somebody. Dad rang Age UK and they recommended some other agencies and we booked an initial meeting with one of these.

Two women arrived from the agency, one manager and a young woman who seemed to be learning the ropes. They arrived at 12pm and Mum would always be up by then but, on this particular day she had gone back to bed after breakfast saying that she felt unwell. Never in my life before have I known Mum to be in bed at midday. Anyway the older manager was very much into cross selling her company’s services. I explained that Dad is not going to pay almost forty pounds an hour for cleaning and she was visibly disappointed. I explained that we were considering booking a couple of initial sessions where the carer would come in and bathe Mum and wash her hair. The manager started pushing for every day. I was glad I had attended because I can see how elderly people can be pressured into agreeing to more of the care agency’s time than they can really afford.

I explained that Mum would usually be up at this time but she was feeling unwell. The manager asked to see her and, again I reiterated that Mum was asleep. “Just let me see her” she said. I took the manager and her colleague upstairs and into Mum and Dad’s bedroom. Mum was lying on her back, fast asleep looking white as a sheet The manager called Mum’s name in a booming voice, scaring her. Mum became very distressed. If I was woken by two strangers in my bedroom I would be terrified, anyone would. I went over and reassured Mum who was overjoyed to see me for once. Then the manager said it is neglectful to leave Mum in bed all day. For the third time I explained that Mum is NEVER in bed all day , I began to feel really annoyed and judged. The manager then said that their carer would wash Mum but wouldn’t be prepared to manoeuvre her into the bath. I said would write to the contact at Social Service and see if we could have a bath chair. This was supposed to have been supplied before. Everything is such hard work.

Despite my misgivings, Dad seemed keen on booking them in so we arranged for two visits the following week. The manager said she had a particularly kind, patient carer in mind. I was working on the day she visited but rang Dad once I had finished, he sound exhausted and exasperated, predictably Mum had refused to be washed. The carer made Mum a cup of tea and left, Dad said she seemed very nice and patient. Later that evening Dad rang me and said mum was crying. I popped round and Mum said her back hurt, I gave her some pain killers and tried to straighten up the cushions on her chair but she wouldn’t let me. She told me to go home and leave her alone. Dad asked me to help with a problem on his computer, we were out of the room five minutes and Mum must have shouted out, demanding dinner, at least fifteen times.

I woke at 4am this morning worrying. Mum is clearly not cleaning herself and she will not allow anyone else to help. What on Earth are we going to do? She could have a bottom covered in sores but we wouldn’t know. What if we need to call an ambulance or doctor out, they will think we have not been looking after her. The same carer is coming again in a couple of days and we will try again but I am not optimistic. I think we are going to have to consider a care home if this refusal continues.

Samantha

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The Dementia Diaries – Chapter Sixteen Care Assessment

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Since my last Dementia Diaries post in March things have worsened considerably. My aunt had her 90th birthday party in a village hall some twenty miles away, and for the first time, I realised that Mum was too far into her Alzheimers to attend. My parents have never driven and my husband and I always take them along to any family occasion, they have never once been left out of anything. It was my aunt who suggested that it wouldn’t be a good idea to bring mum “she’ll want to go home as soon as you arrive” she said. That was very true but it was also the fact of Mum’s urinary incontinence. If the M25 is at a standstill we would be in the car for an hour both ways and the village hall toilets wouldn’t be a vey private place for dealing with any accidents. My aunt had a wonderful time, she was chatting to her one hundred and eighty guests and got up to dance. Mum, on the other hand, can barely get out of her armchair. It really does seem like a lottery as to what sort of old age, if any, you get to experience. My parents have really lived a very healthy life but, for Mum, it doesn’t seem to have paid off. I suppose living to eighty nine is a privilege in itself.

Mum has started to become more and more resentful of my visits and her constantly telling me to “go home” has now changed into “bugger off”, something she would never have said pre-Alzheimers. Dad and I have been trying to persuade her to let me help her bath or shower but she refuses. The last time we gingerly raised the topic it resulted in an hour of nonsensical arguing and Mum pretending to cry. It is as if we are somehow abusing her rather than trying to help. It makes me feel terrible to see her so confused and distressed. Dad can’t help her, if Mum slips she will take him down with her, they are both now so frail. Dad wants to arrange for their mobile hairdresser to visit along with the podiatrist and I said we can’t expect these people to tend to Mum when she is not clean. We are both worried about her developing sores or an infection. It is so difficult because what do you do when someone point blank refuses to bath or shower?

I filled in a request for a Care Assessment on the Kent Council website and it took about six weeks for the visit to happen. A lady called Sarah arrived at my parents house. It wasn’t quite what I had expected. Dad and I explained the issues, although it is very obvious from the moment you walk in the front door. Sarah said that my parents are not entitled to any free care (my dad does now receive enhanced attendance allowance which a local charity helped him apply for) but that the council can recommend some care agencies. Sarah and I went upstairs and she said that some of the carers will do cleaning as well, she commented on the strong smell of urine in the bedroom. Dad opens the windows and Mum closes them. I vacuum my parents house, clean the kitchen floor and put the laundry mountain away twice every week but I hadn’t cleaned their bathroom as I haven’t been allowed. To be honest I was a little embarrassed when I saw how grubby it was. Two days later I was back over there with a bottle of Cif and some bleach. Asking the carer to clean seems quite an expensive way of doing things as the carers charge about £15 more per hour than a regular cleaner. Also, Dad has turned into a bit of a hoarder and I am not sure how much cleaning someone could actually do around the boxes of stuff everywhere.

Throughout the entire conversation Mum kept calling out “what’s happening?” and “what are you talking about?” so we kept explaining to make sure she felt we were speaking to her rather than about her. Sarah asked Mum if she would consent to someone helping her shower and Mum said yes. This is because she had no idea what Sarah was saying. Sarah then said that it would all be alright as Mum has agreed. In reality I know that, when the carer arrives, mum will go into full refusal mode. Mum then started telling Sarah to “bugger off” and “sod off”. Sarah just laughed, she is obviously used to this sort of behaviour. Before leaving Sarah gave us a directory of carers but many of them are out of our area. We have booked a visit in tomorrow simply to discuss Mum’s needs. Dad got the name of the care agency from Age Concern.

When I was upstairs with Sarah she said “your mum is at the end now”. I must have looked quite shocked at her bluntness because she then said “of her Alzheimers”. The clarification, didn’t really make any difference, it all amounts to the same thing. Poor mum, such an energetic, capable and kind person reduced to this. You would not wish Alzheimers disease on your worst enemy.

Thank you for reading,

Samantha

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The Dementia Diaries – Chapter Fifteen No Progress

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It is March and Mum’s cognitive health has deteriorated noticeably since Christmas. Dad has lost a lot of weight and is limping, he has always had problematic feet, probably because he wore ill-fitting shoes as a child. The podiatrist comes and visits him at home, it is an expensive service, almost one hundred pounds a time. The NHS do not appear to offer home visits for podiatry. Dad doesn’t have any time to himself at all. I keep offering to come and sit with Mum so that he can perhaps go to an art class or simply walk up to the village and have a quiet coffee but he won’t go anywhere without Mum. He still buys her flowers every single week.

Apart from a hospital appointment which I took them to, I don’t think my parents have left the house in three months. Mum was always someone who had to be out doing something every day. Now she just sits in her arm chair calling Dad’s name if he is out of her sight for more than a few seconds. Apparently it is common for dementia sufferers to experience anxiety if their main carer is out of sight. The washing machine is permanently on, Mum now generates more washing than my family of five. She isn’t bathing or washing her hair and it is obvious that she needs assistance with her personal hygiene. I ask on our local Facebook group for recommendations of carers and a couple of people privately message me, one someone who was another mother at my son’s school. She tells me she can hardly believe Mum’s dementia situation is dragging on so long. Her own father died of Alzheimer’s disease some years ago and he had a wonderful carer, she shares the details. I tell Dad I think it is time we insist on having a carer visit at least a couple of times a week. I can see he is reluctant. I reassure him that I have a name of a woman who comes highly recommended. Dad decides to ignore this and simply does a Google search and books a visit from a company I have never heard of. Dad says they must be alright, they have a website! I am slightly irritated by this.

My husband tells me that Tower Hamlets Council coordinate all his mother’s care and that he doesn’t understand why I am not going down that route. They have providers they use and they invoice my mother-in-law monthly. He said that, once my parents are on Social Services radar, they will be obligated to help and that he has been stunned by the amount of assistance and attention that his own mother receives. I decide to apply for a care assessment to see what the council say about providing or arranging some care for my parents. Dad and I fill in the form online and wait to hear. We cancel the visit from the mystery care company.

The assessment is supposedly arranged for 11am on a Monday morning. I feel it is crucial that I attend and book the time off work. Whoever is supposed to be coming doesn’t turn up. It would be most unlike Dad to make a mistake about an appointment but I am not convinced that whoever he was expecting was actually coming about the assessment. After being on hold for half an hour, Dad gets through to the correct department and they tell him that there is nothing in their diary and we won’t be hearing anything about the assessment for some weeks. The person we speaks to thinks it may have been one of the charities that the council liaises with that were due to visit but they aren’t sure. Dad only has the first name of the expected visitor and no direct contact details for them but he is certain they are from one of the council older-people departments. While all of this is going on Mum is becoming more and more agitated. She suddenly blurts out “I don’t want to go into an old people’s home”. I am stunned. Dad and I have never discussed this, even privately but Mum has probably heard the phrase “Social Services” and, even in her confused state, realised that something is afoot. We had explained to her earlier about the purpose of the visit and, as was to be expected, she had denied the need for any help. Dad and I try to reassure Mum that was aren’t making arrangements to put her in a care home but she tells me she doesn’t care about me and that she wants me to go home. I have to get back to work anyway so leave feeling sad, guilty and annoyed at a wasted morning.

So, we are no further on. My husband says that his mum’s health has improved no end since she has had her carers. They come in four times a day, every day. Meanwhile, Dad and I struggle on with no help which is just how my parents seem to want things.

Thank you for reading,

Samantha

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The Dementia Diaries – Chapter Fourteen Things Seem Hopeless

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It’s a beautiful sunny Sunday in early March and I really should be in the garden doing some tidying up but my morning visit to my parents has drained me of energy . Mum is becoming more and more obstinate, she says no to anything that could help her. She does not have the capacity to reason anymore so there is no discussion, it’s her way or the highway. If Dad or I try to insist then there will be a tantrum. Even at eighty-nine, Mum can be quite intimidating. It has got to the point where I walk up their garden path with a sense of trepidation and anxiety.

This morning it was apparent that Mum was in desperate need of a hairwash. I always do it over the kitchen sink, it takes ten minutes, if that. Mum’s forehead, and behind her ears are covered in orange, waxy scales. Mum says no way is she having her hair washed and that I should mind my own business and go home. Dad tries to reason with her but she refuses to move out of the chair. Eventually I manage to persuade her over to the sink and very gently clean her scalp and face but afterwards she sits pretending to cry which makes me feel terrible. She pretends to cry on every visit now, it’s an unwelcome new development. She tells my lovely dad is is a horrible husband and that I should go home and not come back. In my last Dementia Diaries post I was optimistic about Dad accepting some professional help but here we are, still muddling along by ourselves. I have filled out a Social Services form online requesting an assessment but have heard nothing back.

The Occupational Therapist has delivered a shiny new walking frame to my parents’ house. It must have cost hundreds of pounds. It has brakes and a little shopping basket attached. It can also be used as a seat. Mum just spends her days sitting in the armchair now but, in the past, has always enjoyed getting out. She should be able to manage a very short walk and it will do her good to get the blood circulating, particularly in her perpetually swollen legs. I suggest that we go out for a little walk around their pretty cul-de-sac. Again I am met with refusal “I am not using that” she says. End of conversation. I try to press the matter but she pretends to go to sleep. I see her peering out of one eye to see if I’m still there, if it weren’t so infuriating it would almost be sit-com worthy. So it will be another day where my Dad won’t see anyone. The walking frame is now in their utility room, tea towels draped over it, what a waste of resources.

This week I was upset to read about the tragic deaths of actor Gene Hackman and his wife, Betsy Arakawa. Betsy, aged sixty five, was carer to Hackman who was ninety five and had advanced Alzheimer’s disease. Betsy had died from an infection associated with rodents and Hackman died of natural causes a week later. As is always the case now, the internet was immediately awash with conspiracy theories about the “mysterious” deaths. There was actually nothing mysterious as all, just desperately sad. It would seem that Hackman possibly did not comprehend that his wife was dead and was alone in their house for a week afterwards until he passed away himself. Even if he had understood he probably did not have the cognitive ability to summon help. I am surprised this scenario doesn’t play out more often, or perhaps it does but we only hear about it when it affects famous people. If my dad died my mum wouldn’t be able to use the phone and she would probably forget what had happened within a couple of minutes. She would not be able to prepare even the simplest meal for herself. I check in with my parents every day and, if they don’t answer the phone, I drive to their house. Fortunately they live very close to me. My dad has an emergency alert pendant, he has had one heart attack. God forbid he has another then I hope he could press the button and get help. My mum certainly couldn’t dial 999 now.

There was a lot of judgement about Gene Hackman and Betsy Arakawa’s deaths. Where were their three adult children, why didn’t they have a housekeeper, caregivers etc. The fact is some people become very reclusive when they grow older and refuse to accept any help from outsiders, even family. They don’t want to admit the full extent of what is going on, they tell themselves they can cope. In the Hackman family’s case, they probably didn’t expect a sixty five year old woman to suddenly pass away. Not every family is close but somebody needs to take responsibility for checking in every day.

So, an unsuccessful and upsetting visit to my parents house. I am hoping that social services will respond to my request for an assessment and that they will insist on someone coming in regularly to wash Mum. Someone who is used to dealing with refusal , tears and tantrums. On my walk home I bump into their lovely, sprightly neighbour whose husband went into a care home with Alzheimer’s a year or so ago. He is very happy there apparently and his ninety year old wife looks so much better for having passed the burden onto the professionals. She told me she wasn’t getting more than three hours sleep a night before and that she had lost two stone which she is now slowly regaining. I hope my dad will consider care for my mum if she gets any worse because we can’t struggle on like this.

Thank you for reading,

Samantha

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The Dementia Diaries – Chapter Thirteen Finally Accepting Help

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Mum’s health seems to plateau for six months or so and then, suddenly, something that she has been managing becomes impossible for her. About six months ago she stopped being able to get into the bath. My parents shower is over the bath so that is impossible too. I didn’t know that this was an issue, my dad didn’t volunteer the information but it became very apparent that Mum was not as clean as she should be. A few years ago the Occupational Therapist visited and installed handrails all over the house, including the bathroom but, even so, Mum can’t now climb over the side of the bath. Like many elderly people, she suffers from urinary incontinence and, although the washing machine is always on, Mum herself isn’t washing the parts of her body that really need cleaning. Incontinence pants such as Tena Lady are very expensive, they aren’t available on the NHS but the district nurse did bring some pads round. They are so cheap looking that they don’t even come with an adhesive strip and I don’t think Mum has the dexterity to use them correctly. We ordered some incontinence pants from Amazon but I’m not convinced Mum will use them, in fact I am sure she won’t.

I don’t come from a very open family and definitely would not feel comfortable giving Mum an intimate wash and neither would Dad. I bought some Water Wipes for her to use but the pack remains, unopened, in the bathroom and they wouldn’t be a long term solution anyway. I have been trying to persuade Dad to engage a carer but he just wouldn’t agree. He has a gardener come a few times a year and Mum constantly tells her to go home and she also constantly tells me when I visit “go home, your husband will be wondering where you are”. I know that Dad is worried about her being difficult with having a stranger come into the house and helping her but we are out of options. I tell Dad that if I were in Mum’s position I would want my family to ensure I was kept clean and we are letting her down by not doing so just because we are afraid of a tantrum. Finally he rings Social Services, we had been waiting for a referral from the psychiatrist who diagnosed Alzheimer’s but that never materialised, and they pay my parents a visit.

Annoyingly I couldn’t be there when Social Services arrived because I was working but they assessed my parents needs and put them in touch with Crossroads., a charity that supports unpaid carers. The very next day a woman from Crossroads visited my parents and spoke to them about any benefits they are entitled to such as Carers Allowance and filled out the form for a council tax exemption. Two days after that Dad had to go for an Xray as he hurt his shoulder . I was unable to get time off from work at such short notice. Dad arranged hospital transport and a volunteer from Crossroads offers to sit with Mum. Dad’s appointment was at 3pm but he still hadn’t been seen at 4.45pm and the carer rang him to say she had to leave. Fortunately I had finished work and didn’t have to collect my son as I usually do at that time so I rushed around to their house. Then Dad rang to say that hospital transport had forgotten him! The nurse told him he should have booked a morning appointment if he wanted to use that service. Poor Dad it had all been arranged that morning, the transport coordinator was well aware of his appointment time, not the most confidence inspiring start to accepting other people’s help. In the end he called a taxi. An expensive solution.

When I arrived at my parent’s house Mum told me to leave before I had even taken my coat off. I asked the volunteer how things had gone but she understandably rushed off without saying much. I made Mum a cup of tea and Dad was home about an hour later. So we learned that we have to book a carer/volunteer for much longer than is necessary in the case of hospital appointments and that hospital transport can’t be relied on.

Thank you for reading,

Samantha

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The Dementia Diaries – Chapter Twelve Alzheimer’s Disease

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I am in rather a low mood so please forgive me if this post is a little miserable. It’s been a tough week with one thing and another. My mother in law is in hospital in London again, this time with Pneumonia A doctor rang my husband and said that he thought my mother-in-law must be hallucinating because of the abusive things she was saying to staff in A & E. My husband had to explain that this is just her every day behaviour. She has now been abusive to every nurse on the ward and, when a woman visiting another patient offered her a chocolate biscuit she went ballistic. My husband has been to see her almost every day but my mother-in-laws tells anyone who will listen that he doesn’t even ring to see how she is. He speaks to her multiple times every single day of the year. My husband’s brothers both live overseas but also speak to her daily and are coming over to see her as it is her ninetieth birthday in a week or so and they had a celebratory dinner planned. I haven’t been visiting her. My mother-in-law, as you may have gathered, is a complex and difficult person and I don’t fancy being in the firing line.

Today I got up early and did some housework, washing and ironing. At 11am I loaded my car with my vacuum cleaner, mop and bucket and drove for two minutes which is all the time it takes to get to Mum and Dad’s, I prefer to walk but obviously I can’t carry so many cumbersome items. Dad timed the Tesco delivery arrival with my visit so I vacuumed their house, mopped the kitchen floor, put the laundry mountain away and then dealt with the grocery delivery. I was standing in the hallway with an enormously heavy crate and mum just would not move out of my way “go around me” she said. I couldn’t without banging into her. Now my shoulder is killing me.

On Tuesday I took my parents to the memory clinic at the local hospital. Getting Mum into the car was an ordeal but we managed it. I decided that I was going to accompany my parents into the actual appointment rather than waiting in the reception area for them as I usually do. The consultation was with a psychiatrist. Dad had changed the batteries in Mum’s hearing aids that morning but she still could not hear a thing or follow the conversation at all. She was sitting right next to the doctor and just smiling vacantly at everything he said. It felt really sad and undignified. The doctor asked if mum is still driving. Thank goodness she has never driven so we haven’t had the same battle that some of my friend’s have had of persuading their parents that they are no longer safe on the roads. Then he spoke about her having a will and Power of Attorney. He told us that Mum’s recent brain scan showed that her Hippocampus, the part of the brain associated with memory, has shrunk considerably and gave her a diagnoses of Alzheimer’s Disease which was not entirely unexpected but still difficult to hear. He asked Dad if they are managing and Dad replied yes. I interjected at this point because, despite Dad’s heroic efforts, this isn’t quite true. Mum is not washing anymore and can’t get in the bath or shower. I don’t mind washing Mum’s hair but I am not comfortable with giving her a more intimate wash and they are still refusing to have a carer in to help. Throughout this dementia “journey” I have found that my parents prefer everything to be a secret and this attitude is proving a huge barrier to them receiving appropriate assistance. The psychiatrist said they should contact social services. I asked if he could organise a referral himself and he agreed. Dad has rung the district nurse multiple times about some hygiene-related issues that Mum is having but we can’t even get a phone call back.

So, two frail, elderly ladies, one in hospital and one being cared for at home. Meanwhile my aunt, almost ninety, is zipping around here, there and everywhere in her car, looking very “with it” as she says right down to her Zara outfits and sparkly nail polish. Dad is still as sharp as a tack but has had to give up his own interests to look after Mum. Life is not always easy but like, thousands of other families, we are muddling along.

Thank you for reading,

Samantha

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The Dementia Diaries – Chapter Eleven – A Long List of Lasts

On By samanthaIn THE DEMENTIA DIARIESLeave a comment

When my mum was younger she was such a busy person, she had a variety of different jobs, secretary, school dinner lady (why are they never called lunch ladies?), barmaid and she would sometimes do a little bit of cleaning for neighbours or feed their pets when they were away. There wasn’t a single day of my childhood that we didn’t have a hot meal, maybe not always from scratch, Mr Brains Faggots and Findus crispy pancakes would feature occasionally but most of the time she’d cook something time consuming after being at work all day. We didn’t have a car so she would have to carry the food shopping back, her palms often red from where the plastic bags had been digging in. She would take evening classes in bizarre things like making pictures out of copper and rush off to meet friends, especially my lovely Godmother, Jo, who died a few years ago just after her one hundredth birthday. Also my friend’s mum, R, who herself sadly now has memory problems and stoically dealt with breast cancer in her late eighties, making less fuss than I would over a stubbed toe. My Mum spoke to R on the phone most Sundays until a couple of years ago but now their forty plus year friendship seems to have been erased from both their memories.

Jo, or Josephine, was about twelve years older than my mum and had never married. Her fiancé had been killed during the war. They met when they both worked for a Greek shipping company. Jo lived on the top two floors of a beautiful terraced town house in Pimlico, her brother and his wife lived on the lower floors. Mum, myself and my twin brother would take The Tube into London to visit Jo, sometimes staying for a few days in the summer. I think my Dad must have been on one of his Open University summer course at this point. In the summer we would go to St James’ Park and Kensington Gardens. In the winter we would go and see the Christmas lights and the Selfridges windows. We’d catch the number 24 bus from Victoria. Jo and her sisters, Baba and Pat, would visit us at our little semi in Hornchurch and my mum would get flustered, cleaning madly before they arrived. She would always cook a huge roast. Jo would always wear one of her many navy blue dresses, usually from Peter Jones. Happy days. Jo died in a nursing home during the pandemic, I couldn’t even attend her funeral. She didn’t know who I was when I last visited her but she looked at a picture of Mum and said “that’s my friend”. It was very moving.

This post has rather gone off tangent but what I wanted to write about was how sad it is when the last time for doing something you loved has been and gone and perhaps you haven’t even realised. Mum will never go into London again, will never see her friend Jo again, never see R again, never cook a roast again (although she helps Dad prepare their meal every evening by peeling the vegetables) . She’ll never again come striding into view, weighed down by grocery shopping. But she is still here. Maybe she can only walk a few steps and perhaps she doesn’t really know what is going on but she and Dad still love each other and still follow their little routines. She still sounds happy to hear my voice when I ring. Less happy to see me in person because she doesn’t like me doing their housework. Life has become very small for Mum and therefore for Dad also, but it is still worth living. Find time to do what you love while you can.

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash

Photo of Pimlico by Lisa van Vliet on Unsplash

The Dementia Diaries – Chapter Ten – Where do we go from here?

On By samanthaIn THE DEMENTIA DIARIESLeave a comment

I haven’t written a Dementia Diaries post for a little while. My mum’s condition, both physical and mental, has deteriorated considerably and even thinking about it makes me feel sad. Every day there is another problem, today Mum has lost her wedding ring, her engagement ring vanished some time ago. My dad’s entire life now revolves around looking after her and he looks utterly exhausted, not ideal when he had a heart attack only last year. I do some housework for them, mostly hoovering and mopping the kitchen floor but Mum is difficult about it and keeps telling me to stop and go home. When I try to ignore her she pretends to cry and puts her hand to her forehead and says I am making her ill. Am I supposed to leave everything for Dad to do? Dad does now have a lady gardener come every now and then but Mum rudely tells her to go home as well. The gardener has offered to clean for them, I suppose her outside work dries up in the autumn, but I know Mum would be telling her to stop for the whole time. Dad has mountains of laundry to do every single day and I go over and fold it and put it away but I am met with hostility from Mum about this as well. I invariably leave their house feeling guilty about Dad and worried about the way forward. How much longer can this go on for?

Mum now has difficulty walking even short distances and seems to launch herself across their tiny sitting room grabbing onto a chair then a table then another chair until she has made it to the door. She makes little mewing sounds as she does this. She can still pull herself upstairs with the two handrails but I don’t think that will be for long, it is a fall waiting to happen. I have asked my dad to consider turning the under stairs cupboard into a downstairs loo but he doesn’t want to. I am not even sure the space would be big enough. Getting Mum into a car is now a stressful ordeal and she won’t listen to direction. I try to tell her to put her bottom on the seat and bring her legs in but she climbs into the car in a standing position, puts one foot on top of another, and then can’t turn around. If I try to help she shrugs me off. Mum was badly hurt after falling while getting into my car two years ago, her leg took about nine months to heal, I am terrified of this happening again.

Another major setback is that Mum is now unable to get in and out of the bath. Dad now washes her with a flannel as they only have a shower head over the bath. They should have a carer coming in to help with this but the answer to that is a resounding no as well. My mother-in-law, who is in a much better state than my mum but lives alone, has carers in four times a day. They wash her, do her laundry and shopping and prepare simple meals for her. It has made a tremendous difference to her overall health. I am not sure if Dad does not want to spend the money on carers or whether he just dreads Mum being rude to them. Both my parents worked hard for many years and it is ridiculous that they are denying themselves assistance when they most need it.

Dad has a sky-high IQ, he must know that they need help but he doesn’t want to upset Mum. She must be kept happy at all costs, even to his health. As a consequence, he has become something of a servant. If he sits down for a second she asks him to open/close a window or door, if he leaves the room she keeps calling him until he gives up whatever he was trying to achieve. Apparently it is very common for dementia sufferers to become anxious if their main carer is not in sight. I came back from their house this morning feeling hopeless. Mum told Dad off for allowing me to put the carpet sweeper over. She asked the same question at least ten times in half an hour. I don’t know the way forward. Maybe one day the decision will be taken out of our hands. I think Dad is determined to manage, without outside help, for as long as possible.

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash