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We invite the people we support to write down the memories they cherish, and we are pleased to pass on with their permission what they have chosen to share.
If you would like to share a memory please contact us.
AlbertOpen or CloseHere, John and his Mother, Mrs Blowey talk frankly about caring for John's father, Albert, at home. Hope for Home is very grateful to both John and Mrs Blowey for taking part in this video. We are also very grateful to Leah Philbrick who helped us to make this film and edit this work.
“Hello my name is John Blowey
My father, Albert Blowey sadly passed away on Sunday 17th June 2007 (Fathers’ Day). At the age of 86.
Dad was fortunate, he had a loving devoted wife Ellen, and a large family, including 2 daughters, 4 sons, 7 grand children and 6 great grandchildren. Two sons lived at home. The family is one of the old fashioned taking a holistic approach (caring for our own).
Dad was a prisoner in the Second World War. He retired as a milkman, after many years.
Dad was chair bound suffering from: severe heart failure, ulcerated legs and missing one hip joint. Dementia started to become visible and the doctor diagnosed Dad as suffering with dementia.
The Help from Outside
Dad had a team of district nurses who came in to care for him; be it his ulcerated leg, his hip removal that had got MRSA or even after his visits to hospital or respite when he came home with bed sores.
The visits varied from week to week sometimes it could be twice a day to once a week.
We had an arrangement with the district nurses, that twice a week I would give Dad a shower, this could only be done when the nurses came in so the dressings would be removed and after a shower I would apply clean dry dressings for the nurses.
The nurses would ask Mum if it would be ok to carry out a test on Dad for his mental state or to check for infection.
Without the help of these people we would not have been able to care for Dad at home. After Dad came out of hospital we where given a hospital bed for the down stairs living area.
After 18 months Dad was assessed to see what help was needed to make things easier at home; the bathroom was changed into a wet room, ceiling hoists were fitted in living room and bedroom, a through floor lift was entalled from living room into bedroom, and a ramp and bars were put at the front door. The hospital bed was moved to the first floor bedroom.
We had a number of different care companies in to care for Dad, but things did not run smoothly.
For example, some said “Sorry he’s too heavy for us to deal with, you will have to deal with him yourself”. Some carers wore bright yellow marigolds to wash Dad.
Then a firm came along who knew how to care for someone in their own home and they respected that at any time there could be family members and children in the house at any time.
Dad’s own GP couldn’t be bothered about Dad.
[Many GP’s are fantastic and are often the central person in doing this sort of care, but some do not do so well: Editor.]
We would phone up and he would phone back and would say the same old thing:
“I will leave a prescription for you to collect.”
We were then introduced to the local community doctor, a consultant who specialised in the care of older people with dementia.
He would come and explain things to the family. He called to see Dad at anytime, and he would phone Mum and ask if it was ok to bring visiting doctors in to see the set up and to meet Dad.
This specialist was always at the end of the phone if ever we needed him; even giving us his mobile phone number at times when we didn’t think Dad would make it.
The specialist, district nurses and Dad’s carers were all like a second family. They called in to help us celebrate Mum’s 80th birthday and then Mum and Dad’s 60th Wedding Anniversary
The specialist arranged two episodes of respite at two different locations. Both times we could see a deterioration in Dad when he returned home. After being at home for a few days he would sort of be back to his old self. Mum was still able to have the odd weekend away with family.
There was always someone to care for Dad, if it wasn’t me it would be the grandchildren and their children, or even good friends if we went out for a family meal.
After a while it started to be more noticeable that Dad was having trouble recognising and remembering family members’ names, he would call Barbara (daughter) Maxine (granddaughter) and vice versa. He would become agitated for not remembering names.
Dad’s way of dealing with forgetting people’s names was to say “What does that silly cow want?”, be it family, carers or even the district nurses.
When the specialist called, Dad would say:
“What does he want? He’s not my Doctor. He should go and speak to my Dr if he wants to know anything”.
Caring for Albert at Home.
Caring for Dad at home was special. He would have the same faces, voices and surroundings that he knew and felt he was part of. We would still have our arguments.
He could be really nasty to Mum at times, but every night as he was wheeled into his lift to go to bed, he would always say:
”Good night, God bless and thanks for what you’ve done.”
…but would never say ”Sorry”.
For Mum’s birthday, Christmas and their Anniversary, Dad would always sign the card himself…. a little squiggle, but you could always read the S.W.A.L.K. (Sealed With A Loving Kiss)
Some days it would be really hard for all of us, but then Dad would have a good day, and he would ask:
“Why am I like this? Why can’t I remember things?”
On bad days we would sit and talk about when he was a milkman, or talk about the good old days.
Eventually Dad became unaware when he needed the toilet, so pads were used. These were checked / changed every time the carers came in. Also convenes were used ; these where changed every 24hrs. If the pad or convene needed changing at any other time I would do it my-self.
Dad’s diet remained really good. His food eventually had to be minced up and he had to be fed by a family member. You could give him his meal be it breakfast, lunch or dinner then 5 minutes later you would get “Come on – where is it then?” referring to his meal.
Dad’s medication was all liquid form, but now and again Dad would have to have tablets especially antibiotics. Giving Dad these could be very awkward, as Dad’s swallowing reflexes were not good. One tablet could mean 3 pints of water, as he always chewed and didn’t swallow. But another day there would be no trouble, even after a chew.
Dad’s outlook to Carers and District Nurses
After the carers or district nurses had been in and spent time caring for Dad, be it getting him up and washed out of bed, or caring for his ulcerated leg, Dad would say:
”I don’t know what they come for, the lazy cows have done sod all.”
He would say this in front of them; they would look at Mum and have a good laugh as they were going out of the front door.
Outlook of the Family
We all feel as family that if Dad had been put into a home, he would not have lasted as long as he did.
GraceOpen or Close
She became very agitated and went into a nursing home. Within two weeks she had lost weight, was bruised, distressed and ended up sitting on a dementia assessment ward. She called out repeatedly numbers from 97 to 100. Sitting in a basket chair it was difficult to see what could be done to alleviate her distress or to care for her. Judicious use of anti-psychotics and antidepressants had some benefit and benzodiazepines were used as well. She didn’t do that well but settled enough to go into a dementia specialist nursing home. There she lost weight, continued to be distressed and her husband could not bear to see her in such a way. He asked the doctors for permission to take her home. They were rather reluctant, and thought it a silly idea that was unlikely to work, with a high possibility of death as a result.
They had already told him that she was not likely to survive until her 50th wedding anniversary. So, they sat and discussed the possibilities. They agreed that whatever happened, Grace should not suffer, but felt that where she was, simply was not right. It seemed that going home would require a miracle. So they decided to plan one.
The nurses and specialist all said they were very worried about the plan to go home and thought it a bad idea. Her husband insisted, and after discussion it was agreed that this could be tried. Wonderfully, Grace did well.
In fact, she lived at home for eight years and the doctors were able to stop all her psychiatric medicines. She had needed these very badly, but as her illness progressed, the agitation and distress settled, and all the medicines that were no longer needed were stopped. Grace gained weight and was happy in the care of her husband, along with a small but loyal group of carers who supported him.
For a lady who was fully dependent, needed full nursing care, including feeding, it was extraordinary to see her on trips out to shopping centres and her beloved golf club, amongst other places.
She smiled, spoke hardly at all, but watched everything that Jack did. Jack and Grace proved the doctors wrong. They did see their 50th wedding anniversary.
Grace died quite suddenly one morning after breakfast. She was in bed. Grace and Jack had celebrated their 57th wedding anniversary. The doctors think that Grace’s long survival was attributable to the combination of good care, with the fact that this was a Multi-infarct dementia and not an Alzheimer’s type dementia. Her dementia stabilised for quite some time and did not progress, explaining the unusually long length of time at home. Apart from a real delight in seeing them coping together, the specialist’s reaction at the end of this experience was one of genuine pleasure in being proved wrong by Grace and Jack, whose brave decision showed him that this is a viable and a good way to care for dementia patients. As a result of this, when others asked if they could take their loved ones home from nursing homes and if they could just stay at home he became more inclined to say “Yes”.
In one small district, a specialist and his team have cared for more than a dozen people at home until they die, and more have spent longer at home than they could have done otherwise. The feedback from their carers has been very positive; almost all have been really glad that they did what they did. A few had to give up, but having tried, they have, perhaps felt more secure in the knowledge that they did not let their loved ones down.
Grace TOpen or CloseGrace T’s son-in-law explains how he and his wife looked after Grace and her husband in their busy family home, with their seven children.
Soon after Grandma came to stay, my wife was admitted to hospital for 9 weeks very seriously ill. So we had Grandma, bed bound and barely able to talk with Grandad staying and our children to look after, while I did my day job and also visited my wife regularly at hospital.
We had carers twice a day and each night. We could not cope with being responsible at night so we paid for sleep in carers.
When my wife was especially ill, I could leave the home, with a nurse to call me if the children were in trouble and be with my wife. The carers also did some ironing and cleaning when there was nothing to do for Grandma. One refused to do anything that was not specifically for Grandma so she stopped coming.
The others were just wonderful. In the end, we could not have done without Grandma. If Grandma had not been living with us, we would have barely seen her during her last months with us. The demands of my wife’s illness would have prevented that.
LilianOpen or CloseMy Mum’s name is Lillian with two L’s, a point she always made and always corrected, she didn’t mind being called Lil but never ever Lily! Married with four children she always worked. When we were younger she worked nights. She did various jobs but the ones she loved the most was when she worked with children as a nursery nurse and the jobs she had in what was referred to in her days, ‘old people’s homes’.
She loved the older people she looked after and really cared for them. Many a story she told about them and it always saddened her to see the ones who were left there forgotten by their families. She would invite them into our home and made them feel special and useful. I loved listening to their stories and can remember a great sadness when I heard how they didn’t see their children or grandchildren but what I recognise now as an adult is all the excuses they made for them. I think it was this that taught me a great respect for the older generation.
Mum had an accident whilst working in one of the homes and subsequently became registered disabled and was never able to work again. My father became her carer for many years and as children we were all aware of the restrictions a disability caused. He died when I was seventeen and I became Mum’s carer. It was the most natural thing for me to do.
Her needs were not great. My father had always exaggerated her needs to make him look better. Mum and I lived together until I married and moved out. I travelled over every day and took care of what needed to be done. Five years and two children later I thought it a good idea to have her move in with me and that was in 1985.
Over the years she had various health problems and on three occasions I was told by her Doctors that I should prepare for the worst but each time she clawed herself back and survived telling me many times that there was far too much for her still to do. At times I thought her invincible.
I know now that her dementia, later to be diagnosed as vascular, started years before the actual diagnosis. For me though her memory problems and some of the repetitive behaviour was just due to age and was so gradual it became a part of our normal days and was just Mum.
When I finally thought there was a problem I asked one of our GP’s to refer her to the memory clinic, he, who I would later have to complain about, asked Mum what the date was and because she got it right didn’t get the referral I thought she needed. Months later she saw another one of our GP’s and she, who would later earn my utmost trust and respect, referred her.
My understanding of dementia was Alzheimer’s and people who had that were old, had memory problems and exhibited some peculiar behaviour sometimes. So how unprepared was I?????
However the diagnosis didn’t come right away as Mum didn’t seem to exhibit many of the symptoms, but in retrospect some of that was my fault as a lot of her behaviour had become so normal to me I didn’t mention it. What should happen is we are given a questionnaire asking if our loved ones exhibit certain behaviours. I cannot honestly say if I was frightened of the thought of my Mum having dementia and ignoring certain signs but I suspect yes so therefore the diagnosis was delayed. None of that though stopped the dementia long enough to give me time to get to grips with what was clearly happening.
I never told Mum what she had. She was well aware of a problem so I told her it was due to small strokes which she accepted. She had nursed people with dementia and had always said that it was the last thing she would ever want to have and that she would rather take her own life or have someone else do it for her. I believed she would and still thought we had so much more time her consultant had indicated as much but still my understanding was so lacking.
The spring and summer of 2007 dragged me into the world of dementia that I could no longer deny or hide from without a doubt she had dementia.
The medication for dementia Aricept and Reminyl were unsuccessful. Their side effects were just too great for her. By now though Mum was having hallucinations and delusions. Enter the Risperidol which I gave her at first willingly but the more I learnt about it the less I gave her but will always question my decision to carry on with it.
So unprepared for what the Dementia was doing to my Mum, I panicked. The hallucinations and delusions were so shocking I was convinced that the diagnosis must be wrong. Her consultant was very patient with me always returning my calls and visiting at home. Of course they knew exactly what was happening and that it was all quite normal. All I had to do was catch up.
It became time for my care package. A social worker came and ran through everything I could have, it did seem such an awful lot at the time, but all I needed at that time, September 07, was a place at a day centre for her. Still completely unaware of what the dementia was capable of doing that is all I asked for.
Mum’s appetite was always problematic and she lost lots of weight. Food became a huge issue between us. I equated food with life and I was watching her fade away. Enter the dietician and the food supplement drinks, disgusting, but Mum had had them before so I was able to introduce them but she would only take them from me. This ruled out any kind of respite care.
In September 07 she stopped eating and would never eat again. Reassured by the dietician I was able to accept it but it was to become an issue again later, but not with me.
At this stage Mum was still mobile and talking even though what she was saying wasn’t real. She would talk for hours about what she had been doing and who she had seen. It was at this point I decided not to try and keep her in my world but to ease her distress I must join hers. It made things so much easier certainly for me and I think it did for her.
Two days a week at the day centre was wonderful, for me, but her not eating became an issue. Although the day centre staff were wonderful like me at the beginning they couldn’t understand how she managed without any food. In the end I had to get someone from the memory clinic to phone and explain that the situation was under control.
By Christmastime 07 Mums short term memory was gone and her understanding of things was almost non existent. She could still walk and talk but just didn’t get it.
She wasn’t incontinent, yet, but getting her to the toilet was difficult as was bathing her. My occupational therapist was a revelation! I only had to ask and within days I had what I needed if not the next day. That relationship was a great support. She had said that if I saw anything I thought would be of use she would try and get it for me and she did. I had no idea of the amount of equipment that would become available to me.
Around February 08 Mum had become less mobile and spent most of her time sitting but she loved being in bed the most.
The district nurses came regularly and were always just a phone call away. They too were wonderful but they were always so dreadfully busy and short staffed. Mum had started to become incontinent and was assessed for pads. The red tape meant it took weeks for the first delivery to actually arrive so in the meantime I had to provide our own. Very quickly we needed to go to the next stage of pads but this happened quicker which was a relief as Mum had become doubly incontinent.
Mum seemed to be in a rapid decline and I was unable to leave her at all so I asked social services for a re-evaluation on my care package. I wanted to ask for a sitting service. It took 11 weeks for me to get assessed and allocated a sitter for three hours a week.
It was a huge thing for me to trust a stranger to come into my home and for me to leave something so precious knowing that Mum wouldn’t be able to tell me if anything was a miss. My sitter was wonderful and won my trust very quickly and for a stranger Mum responded really well.
There came a time when I couldn’t get Mum out anymore so the nurse from the memory clinic visited Mum at home. By now I had realised how little the professionals could do except for monitoring. I only had to leave a message for my GP and she would call back, but again, all she could seem to offer was nothing except a trip to A&E if I was worried about a particular aspect of Mum’s health.
My whole focus had become Mum and her needs. I had made the decision to have no invasive procedures and a DNR. I wanted the doctors only to administer what was necessary to make her as comfortable as possible. I had also decided to keep Mum at home, although, then, I really didn’t want her to pass away here but in retrospect it was my fear of being so helpless and not fully understanding the input that a person I hadn’t met yet would have. But there was an event yet to happen that would change my whole thought process. I would make the decision to keep Mum at home being prepared to fight for that right and to do whatever it took. I had anticipated much trouble but in reality there was none.
What I found difficult to deal with sometimes was how I had become completely responsible for my Mother’s life making decisions which at the time seemed right but which would later consume me with guilt. It was so hard trying to determine if she had any pain. If she had a temperature I could medicate her for it but I didn’t know the cause.
I knew that being incontinent could cause infections but once I couldn’t toilet her anymore I couldn’t test her. Other things could have caused her pain and discomfort and the not knowing and fear of missing something or making a mistake plagued me. What I wanted was someone else to take some of the responsibility. I was constantly being asked ‘what do you want to do?’ A few times even my GP asked me what I wanted her to do. All I ever was, was Mums daughter and carer never a medic. I wanted someone else to do it for me and I think rightly so.
Friday July 4th 08 started normally, for us anyway. Mum went to the day centre she walked, shuffled really, to her wheelchair and got on the bus. When she got home she looked exhausted and could barely stand. I put this down to her being tired. Looking back I don’t know how I managed to do it, but I needed to get her from her chair ready for bed and in bed. I put my face close to Mum’s and said ‘Mum I really need you to help me to get you into bed.’ She looked at me and said ‘Ok.’ And she did! She managed to stand, turn sit on the edge of the bed so I could get her in. I thought with a good nights sleep, with the aid of a sleeping pill, she would be better in the morning.
She wasn’t much better so I left her in bed. She had no other symptoms and was taking her medication and drinks. By Sunday evening I thought something else was wrong. Monday I called the Doctor. I thought she had had a stroke but there were still no other symptoms.
Mum was taken to A&E. They seemed to agree with me. She was dehydrated but became stable. Suddenly things changed, her blood pressure plummeted and her heart rate became even more erratic than usual. What we found out later is that she had had a small heart attack that didn’t register. The chest x-ray finally showed that she had pneumonia and wasn’t expected to survive. They asked about intervention and resuscitation. There was to be none. They said that they could try a pressure mask to ease her symptoms if she would be able to tolerate it. Basically though they were sending her to a ward to die.
Eventually they sent her to a respiratory ward and thus began a period which would truly horrify me!
If you talked to Mum she would respond and I had learnt with dementia that you couldn’t just come to her and start doing things to her without talking to her and explaining. Within minutes of Mum being on the ward two nurses were trying to put on the mask without talking to her or allowing me to stand next to her, pulling her around so much that she was getting distressed. I had to physically remove one of the nurse’s hands from Mum. They then told me to wait out side but I flatly refused. I had to complain to the night sister at how they treated Mum. Little did I know that this was going to be the norm.
My sister decided to cover the nights while I did the days. I would get there early so I could wash her and give her the medication which by this time was mostly liquid. I knew that with the amount of fluids Mum had to have during the day the nurses would have difficulty doing it or would not really have enough time to do it. So here was I who knew Mum the best absolutely adored her and who was completely prepared to sit with her and see to all her needs when needed still under the impression that she would not be coming home. It was the least I could do. You might think that the nurses would have appreciated not having to be overly concerned about her, but oh no —- suddenly I had become incompetent and invisible——but not for long!!
I have to be honest. There were a few nurses who did get to appreciate what I was doing but none of them knew how to treat a dementia patient or had a real understanding of the disease.
Mum’s not eating now become an issue again with some of the nurses. I was able to make them all understand bar one and she wasn’t even a nurse but a healthcare assistant. She made it her mission to get food into Mum and became very vocal at how she objected to my presence all the time and refused to work with me in anything I was doing for Mum. She was openly hostile towards me. This person on two occasions waited until I left the ward and tried to give Mum food. It was only the patient in the next bed, who was wonderful, stopped her.
One of the nurses who had no problem took me aside and asked if I would mind if she got the ward dietician to assess Mum. She still couldn’t quite get that Mum didn’t eat. I had no problem with it but I was not about to let anything interfere with what was clearly working.
The dietician who came was a breath of fresh air and although I didn’t know it at the time would become a great support. She looked over Mum and wasn’t at all worried about her fluid intake. Once she had seen Mum the nurses finally accepted it, all except for one that is.
It was looking like Mum, once again, was beating the odds and was going to survive. It took about two weeks for all who worked on the ward to see and value the relationship I had with Mum and finally gave me some respect, again all bar one.
Every Doctor who had contact with Mum and I was wonderful. They were compassionate and truly understanding.
After about two weeks when Mum was over the worst physios started to work with Mum, sitting her on the edge of the bed, in a chair and standing. Mum didn’t want to be any where except for bed. If you sat her in a chair she would recline herself even in bed she would slide herself down. To me this was normal but now the physios were unhappy. Even the occupational therapists were unhappy and because Mum was in hospital I had to deal with them and not the ones through the clinic.
So unhappy were the physios they started talking about sending Mum somewhere else for assessment. I was astounded. After having no input at all and having no base line for Mum they suddenly wanted to start making her do all sorts of things. How on earth did they think that they could start working with someone who had severe dementia? They would not listen to me. It took me days to make the physio understand that this was not going to be appropriate for Mum. Eventually she reluctantly agreed with me.
The next problem I encountered was with the ward care manager. Mum would not be allowed home until they had arranged for carers to come in twice a day and use the hoist which would now be supplied. Once again I felt that I had been viewed as incompetent. What had I been doing all these months? Of course I was digging my heels in when someone took me aside and told me to just agree with everything. Once I got Mum home I would then be in control again. It worked!!
The doctors had said nearly a week before that Mum was fit to go home. Every one was working against the one person who did know best. Just under three weeks after being admitted and being told that she was not going to survive Mum was home.
I learned to use the hoist safely on my own. The carers didn’t get to Mum until nearly mid-day which was far too late so after a couple of days I stopped them coming. I had regained control and it was great. The community physios tried to work with Mum but they quickly realised that it was a waste of time and that stopped as well.
Mum did not want to be in any other position other than reclined so effectively she became confined to bed but she seemed to be doing well.
After a couple of weeks Mum couldn’t tolerate her drinks. The dietician from the hospital, who was now in the community, called and she put Mum on some supplements and changed her drinks. The new regime worked and Mum gained weight and looked really healthy. The only problem was trying to get her to remain sitting long enough to give her fluids. It was such a struggle and overall it could not be solved.
There was no day centre now and I only had the three hours sitting a week. I contacted social services to see if I could have some extra time. This was towards the end of August.
By the beginning of September Mum had deteriorated. She wasn’t talking anymore and always had her eyes closed. I could still get her to take her medication and drinks but it had become an all day job to get the required amount into her.
The social worker came and offered me 56 days and nights of respite care and carers but couldn’t see how I could be allowed another three hours a week sitting service. In the end I had to ask her to stop offering me what I didn’t need or want. She left leaving me with the impression that there would be nothing forthcoming.
After the horrendous experience at the hospital I now made the decision that Mum would stay at home until she passed away. In my opinion nobody would be good enough and devoted enough to put all of her needs above all else. I was not prepared to relinquish her care to any one else. She deserved the best at all times.
The social worker rang and to my absolute astonishment told me that I been given an extra three hours a week to start on the following Monday, September 15th 08.
It was that week that I sensed that something was vastly different. Apart from Mum’s medication the drinks were becoming a struggle. I was prowling the house watching Mum and for the first time felt so alone, isolated and very afraid.
On the Wednesday afternoon I felt so desperate. I rang the clinic and was unable to talk to someone right away but my call was returned relatively quickly. I completely broke down and this person said that she would arrange for the consultant who deals with advanced dementia patients who are being cared for at home to visit. He rang me that afternoon and said that he would be round immediately. I found this quite astounding. He did indeed turn up a short while later with another doctor and from the moment he came in and started talking with me I immediately recognised this person as someone who would take on some of the responsibility, who I trusted immediately and knew that Mum would be completely safe in his hands.
We talked for a while and he started to talk openly about Mum dying. I knew exactly what he was doing and appreciated his honesty and directness. Effectively what we did was decide on Mum’s ‘end-of-life’ plan. Although it was very upsetting it was a great relief. The support available was a revelation and he was working with me to keep Mum at home.
He went into see Mum. We stood at Mum’s bedside and he again talked about Mum dying. It sounds really odd but it was reassuring. Mum responded to him and actually looked at him something she had stopped doing with me.
He sat down with me again and we made definite plans for Mum’s end of life. He told me, obviously, that he didn’t know how much time Mum had left but in the meantime we would make Mum as comfortable as possible. I told him that I would do everything within my power to keep her at home and his response was he would support me in every way and outlined every service and support available. It was a huge relief. When he left he said he would call back on Friday, September 19th.
After he had left I felt really confident that this doctor and I were on the same page in wanting what was best for Mum. In the short time I had spent with him I knew that the coming months would be easier with him in them. Mum, however, had a different idea entirely.
Thursday was a really peaceful relaxing day. Everything I had to do with and for Mum was so easy. She took all the fluids I offered and seemed really relaxed. Looking back, I think that my whole demeanor had changed after my encounter with the new doctor. It was the best day we had had in months and I felt ready, with renewed vigour, for the future.
Friday morning Mum’s right arm was terribly swollen. My first thoughts were that I had somehow injured her while handling her. It was difficult getting her fluids in but I knew that the doctor would be calling later. I think I knew what was happening but wasn’t ready to see it.
It was a very long day the doctor didn’t turn up until nearly 6pm. He took one look at Mum laid his hand on hers turned to me and told me that she was dying and it would be sometime over the weekend then gently touched the back of my hand. Those words, those dreaded awful words delivered with such care and compassion will stay with me.
He made arrangements for the district nurses to call that evening and then they would call in three times a day. He gave me instructions on how to administer her morphine but would get the nurses to connect a pump. Just before he left did something which still amazes me, he gave me his mobile number telling me that I could call if I needed to.
I went back into Mum got close to her ear and for the first time told her that it was okay to let go and to go see all the people who had passed away before her whom she loved.
Not everything went smoothly that weekend but it didn’t seem to make much of a difference. Needless to say I spent the hours by her bedside playing her favourite music, talking to her constantly and touching her as much as I could.
She was peaceful with the medication which was a relief.
Mum passed away on Monday September 22nd 2008 just after 7am. She waited until I popped into the kitchen which causes me great pain. I so wanted to be with her.
There was no autopsy which again was such a relief. It would seem though that I have something very rare, Mum’s cause of death is recorded as, dementia, which gives me great satisfaction and comfort because that is what she had and that is what took her.
Hindsight is always perfect vision. I would do it all again but I would do it better both for Mum and me. I was incredibly lucky because I was young and fit enough to be able to take care of all of Mum’s needs. When she needed changing, and the important word here is needed, it was done. We never had to wait on carers. There is nothing more heartbreaking and distressing than seeing and knowing that someone you adore needs something and you are unable to do it for them. Although I was caught in a system that is insufficient I was not at all reliant on it as others are.
The postcode lottery which affects the drugs and services available to suffers and carers must be addressed. As must sufficient funds be directed into the services but it would be pointless allocating funds if attitudes stayed the same. On my journey with mum we met some wonderful dedicated caring people but equally we met some who were not. Whether it is just mostly about training experience and awareness, I don’t know, but in order for improvement something has to be done and it needs to be nationwide so that everyone gets to the same point.
Dementia awareness for professionals who do not deal with it on a daily basis has to become paramount. GP’s need to make referrals sooner, Carers care packages need to be more flexible, offer what is needed not what they think is needed. Hospitals need to be safe and dementia aware. We wouldn’t leave a two year old in a ward unsupervised for long periods of time lying in their own body waste and being able to get off the ward.
When a person is born they are entirely helpless and totally dependant on the adults for their survival, both physically and emotionally. Mostly they are nurtured and watched, their first smile, words, steps bring great joy to our hearts and rightly so. Dementia made me watch as Mum gradually lost all of those milestones, all the inherent things which made her who she was, until she could do nothing for herself. It is at this time we need to put every effort into the end of these people’s lives as we do at the beginning of them.
Very soon after Mum’s diagnosis I realised that there was no hope for her. This ‘thing’ that she had was going to slowly, or not so slowly, take her from me in ways that I couldn’t even begin to understand but would turn out to be horrendous.
Towards the end all I wanted was someone else to really care. Care what I was trying to do for her. To make her passing as comfortable and as painless as possible but always with the utmost amount of respect. I think I was able to achieve that. It should be that way for anyone who wants to do as I did.