Dementia - Shocking News

Diagnosis Hurts

 

I knew things were not right whilst my dad was still alive.  Mum was very depressed and always harping on about how horrible my dad was to her, always portraying herself as a victim.  I found this hard to handle as my dad was quite clearly coming to the end of his life and mum was his main carer.  I could not stomach her constant moaning and spiteful comments about him and I would feel angry and bitter towards her.  I tried to help out as much as I could, shopping, cooking meals, spending time with my dad, running them both up and down the hospital.  As time went on she became furious if anyone tried to help and took it as a direct criticism of her ability to nurse my father. 

One time my dad was admitted to hospital with severe food poisoning and the tests revealed this.  I was upset that the hospital food had made him ill and started to complain to the staff.  They were very kind but very unresponsive and vague with their answers.  I left well alone as we had worse things to worry about with regards to my dad than a bit of food poisoning. I went to their fridge without my mum’s knowledge and found most of the food out of date by weeks, even months.  I was aghast.  I checked the date on the eggs, three months out.  I checked some of the tinned foods, five years out of date.  She had given him rotten food.  This was so unlike my mum and really had concerns that she was trying to kill him off.  She knew what she had done and dared anyone to blame her.  She can be quite formidable when she wants.  Needless to say after that we all kept an eye on the sell by dates of her food stores, regularly throwing things away, much to her annoyance.  I am sure she went into the bins and got it out again...

Dad came home to his bed in the lounge and the daily grind of nursing staff, doctor’s calls, and equipment deliveries continued.  This drove my mother up the wall, she felt that her home was being violated and that she had no control.  Even trying to explain the reasons to her met with verbally aggressive responses and no change in her attitude. I thought she was being plain selfish and unreasonable but no amount of coercion or logic made any difference to her, she did not want these people in her home.

I took to taking my dad out in his wheel chair on Saturdays and we had a great time together, his granddaughters, my two children, now grown up would come with me and we would stop off and have a coffee in the High Street, he would treat us to a small gift each and we would talk and laugh about stupid things.  I treasure these outings and was so glad that I took the time to do it.

Mum on the other hand became increasingly jealous stating to me ‘that all he ever wanted was me’ and then she would sulk and be extra harsh with him.  She would poke her fingers into his open sores on his head, she would take ages to get him a drink of water.  Little things designed to ridicule him and hurt him.  He never said a word against her during this time, only stating that she was difficult at times.

I started to pay more attention to what was going on and my daughters would visit more often.  Sometimes I would sleep next to him wishing him to pass away in his sleep to release him from his poor broken body, but he never did not for a long while after.

Towards the end dad spent a lot of time in hospital, and he always asked to go or asked for an ambulance to come through either myself or my daughters.  I think he felt safe and secure in a ward and I would visit him every day, sometimes twice.  He would ramble on about the past and his family and I would listen.  One day he stared up at me with big tears in his eyes held my hand and choked out the words ‘who will look after your mother’.  I made light of it and said ‘oh come on dad you know I will always take care of her I promise you from the bottom of my heart I will look after her until the day she dies’.  He just stared up into my face and the tears ran down his cheeks.  It was one of the saddest moment s of my life.  I thought it was a strange request as he knew I would always be there for her. 

Dad passed away in 2008 just before Christmas.  We were all there, mum, my brother, the grandchildren and me.  It was a relief and I feel guilty about that now but he was suffering so much.  Now I am glad he went when he did as he could not have dealt with the dementia that my mother now suffers from.

Mum stayed in her home for a few months and came to stay with me and never went home.  Over the first six months I began to realise that she was not normal.  Forgetful, argumentative, kept losing things, could not take in what I was saying, never moved off the sofa, always wear the same clothes regardless of the fact I went and brought her a new wardrobe.  She did not bath, wash her hair, or eat.  I contacted the Doctor and was told it was probably grief and that it would take time for her to adjust.  I knew it was more and arranged for her to have a memory test.  No wonder my dad had been so desperate to know if I would look after her, he knew she was ill, but he never said, he was never a traitor to her, loyal to the very end. 

She argued with my family if they visited, she overwhelmed my granddaughter by fussing over her all the time, and slowly the visits started to dimish.  My husband was asked the same questions over and over again, I was treated as the protagonist, called a bitch, told I was horrible and mean and anything other insult she felt like firing my way. I could not understand why she was being so nasty to me.  I was still hooked into the mother daughter thing and it hurt me like hell.  I would withdraw into my bedroom and try to think of ways to get my own back on her, like a child would.

I contacted her Doctor but was told again it was grief and she would be ok in a few months.  It got worse, sometimes there were funny things.  One day we ordered a pizza delivery and she had her night clothes on.  When the door bell went she panicked because being very proud visitors were not allowed to see her in her bedclothes. My husband said not to worry it was the pizza man.  ‘Peter, who is Peter, I don’t know a Peter.  No amount of explanation would work and she ran up the stairs so Peter would not see her.  Some things are embarrassing, she approaches children, babies, anyone who is an infant and touches them and tells them how gorgeous they are.  You can see the fear on the children’s faces and the parents looking at her like she is mad and a threat to their off spring.  No amount of persuasion will take her mind off what she is doing so I do not like going out with her in public because I am worried for her and do not want her to be humiliated.

One day I had to take her to the Doctors on a bus.  A teenager got on with a coke can, he was being cool and had his finger in the drinking hole to carry it.  All of a sudden she jumped up and said ‘Oh you poor boy, you have your finger stuck’.  He was not a very friendly looking adolescent and I was mortified,  I pushed her down into her seat much to her disgust and told her to leave him alone.  She argued at the top of her voice all the way to the Doctors about how she is a kind person and he needed help and how horrible I was for leaving the boy with his finger stuck in the coke can.  The whole bus was staring at us.  It got worse that trip to the Doctors.  We were waiting in the surgery sat opposite a man who clearly was suffering from the after symptoms of a stroke.  He could not stand, talk or communicate except for grunting.  He was resting his hands on the walking stick and my mum noticed that he had LOVE and HATE tattoos on his knuckles. ‘Oh you poor man have you lost someone you love’ she said staring longingly into his vacant eyes.  ‘Mum shut up please leave him alone’.  She quickly turned on me ‘No I will not I am being kind and friendly, not like you’. The man started to grunt and make weird noises with his throat, he put his fists up to her face and tried to stand up and walk towards her, ‘Oh darling, what is it, are you sad about your lost love’.  God she was behaving like she was acting in a 1940’s film.  I thought he was going to punch her.  ‘Please mum stop it for god’s sake.  At this point a huge man about 40 came walking over, oh god now what.  He was the old man’s son.  He helped his dad sit back down, threw me and my mum the most filthy look.  She was still twittering on about lost loves.  Thank god the buzzer went and we could leave the waiting room.  That was it the last time I took her anywhere on my own.

I got the news yesterday from the Doctors that she is now suffering from moderate dementia.  It has taken a year to get this far with a diagnosis and there are still more tests to be done.  I knew and have known for two years, my dad knew, he knew for two years, now we all know.  Although I now have what I wanted, a sort of diagnosis, and it was expected I am so upset that it is now real.  I cried in the Doctors but had to hide in the toilet so as my mum could not see me.  She waited outside the cubicle unaware of what had just happened.  She was angry, very angry, ‘Why did she need a new hearing aid’.  She had just undergone a test for dementia, been told she needed a brain scan and that there was nothing anyone could do to make the dementia go away and it would probably get worse.  I did not know at that point whether to laugh or carry on crying. Even today she believes she went to the Doctors for a hearing aid. 

The reality has hit me hard today and I feel in a bit of a daze.  What does the future hold for us as a family, am I going to be able to work, will I ever be able to leave her, who will look after her if anything happens to me.  Financially how are we going to manage, will my husband stay with me through this or cut his losses.  Will I ever be able to spend some time alone,  do I burden my off spring with the care, what care is available out there.  I am so scared, I love my mum but can I do this?  It makes you realise that you know very little about yourself when faced with such a future.  I am selfish, I do want my life back, I am resentful, I am bitter and I do think 'Why me'.  Then sense takes over and the childish reaction is replaced with a sense of loyalty to my dad and the promises I made him filter back onto my memory.  I have no choice, and I am a strong person, I can do this......well heres hoping....

Comments 1 comment

london55 4 years ago

Thanks so much for your comments, I especially like the dont feel guilty theme, I do every day and make mistakes dealing with the behaviour. I have found a fantastic site that really helps and has a forum where I speak to carers who are dealing with the same illness. They are 'in it' and really are helpful. mycaring.com, its fantastic and when I am at my lowest there is always support from my stage group. If anyone find this Hub and is struggling go visit them, its become my emotional life saver....

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