Recently Mum has been having problems with her memory. A doctor from the Memory Clinic came to see her last Friday. So they tested her with a few questions. And she couldnt even say where she lived. Her response was her mind is a blank. I just sat there feeling useless and so sorry for her. So the Doctor reckons shes got the early stages of dementia. And my Mum just went into denial. Mum thinks there is nothing wrong with her. I took the news quite calmly but when it finally sunk in I got very upset. I keep trying to hold it together and not cry but Im doung that unsuccessfully. At the moment Im still carrying on with my duties like washing and cooking meals. But I find it a lot to take in. My Mum is 84 next month. And Ive been her carer for the last 11 years. I do feel quite angry that my Mum and countless others should go through this.
Hi @Jackie_201112 
BIG hugs
If you can find some time to yourself or with a good friend ā¦let go
You need the space, self-compassion and time to process all this. If you try to hold it in the energy you use to do all of that will exhaust you even more.
I understand and hear everything youāve said, and agree wholeheartedly. Dad had vascular dementia but Iāve friends and family whoāve suffered from Dementia & Alzheimers too
Here are some useful resources:
Dementia UK: Click here
Dementia UK Specialist Nurse support: What is an Admiral Nurse, and how can they help?
Alzheimerās Society (UK ) https://www.alzheimers.org.uk/about-dementia/types-dementia
Alzheimerās Society Caregiver Guide Caring for someone with dementia Click here
BUT before, information, facts and actionsā¦please give yourself time to breathe, and if you can just sit with your Mumā¦whilst sheās in denial, Iāve found the Feeling of the reality hits BEFORE, words and reasoning and actions
sending hugs
I am sitting here trying not to blub. I was with Dad when he was diagnosed but refused to accept it. My brother (who has just died) refused to accept it and I was strongly criticised by other family and āfriendsā. Now Graham (husband) is having memory issues following his stroke. He was referred to Brain Centre at local hospital for Neurological support and they are doing very detailed checks. That will help with a full diagnosis and getting him some help, but it is a niggle at the back of my mind that he could deteriorate and I will have to face thingsā¦
Horrible to think I MAY face it, BUT you are having to do so now and I feel for you.
Thank you for your very kind words they mean a lot at this difficult time. The Doctor mentioned about giving Mum some drugs to delay the symptoms. My other siblings have suspected for a while. I do have a couple of friends to vent to and that does help. If I need help I can get it from my auntie, niece and sister. I have to go to the CAB as I have a few things to sort out. But my friend has offered to go with me. Mum has her moods but she has them in short bursts. Then she calms down. Im trying to carry on as normal if thats what you can call it. I would like to talk to others on here about their experiences with dementia. And how they coped day to day.
Hi @Jackie_201112 Iāll reply in a while, Iāve call for an 1.5hrs right nowā¦
I hear you, and sitting right there with you. (ALSO Sitting with OUR lovely @Chris_22081 - big hugs hon! Itās ok to blub here - you know that!)
I understand what youāre sayingā¦can I gently suggest that you donāt try to stiff upper lip carry on as normal, but show your Mum how worried you areā¦itās likely she is too, AND scared like you both areā¦this can help you bothā¦also may I say there is not really anything normal these days - after 11 years routine changes and we all as carers adapt and shiftā¦so letās be kind to ourselves and compassionateā¦things are changing and its not nice, stressful and horrible - but your friends, us, and family are all with you!
BIG hugs
Hi Chris Thank you for your kind words of support. Im trying to cope with things a day at a time. Trying to carry on ss normal but I realise its going to a new normal. I think Mum has forgotten what the doctor has said and just watches tbe television. Its her only distraction and joy in life. I try my best to make her happy. Chris if you want to cry then do so. I did before. Its strange but I feel she has already gone and Im mourning for her. Trying not to think what could be ahead for her.
Having seen the changes in my Dad it worries me if G was to go the same way. Since his stroke he has relied on me and says he doesnāt know what he would do without me. A nice compliment but still worries me. I attend every medical appointment with him as he needs a debriefing after we leave as he often cannot recall all the details of what was said.
Donāt worry - I do let go sometimes. Often while out walking Buster and I find when I am writing I get wrapped up in the emotion and often need a box of tissues on hand. I suppose it could just be the emotion I feel is being pouring into the story.
They call Dementia āThe Long Goodbyeā because of the way it takes the personality before the person goes.
I also find it great on the Forum as so many people give so much support and love that means a lot.
@Jackie_201112
Hi welcome back
My lovely late husband was diagnosed with vascular dementia. Had strokes and other health issues. Iām 99% sure he never realised he had dementia. I do remember, dreadful times , which signalled to me dementia was setting in. Thinking to myself,no he hasnāt, itās anything but. To be honest when his consultant confirmed my fears, it was almost a relief. Heartbroken, devastated but at least no more wondering and hoping. I still occasionally get angry even after all of this time that it happened, no one deserves it and no one should have to watch a loved one go through it. Iām sure, eventually it made a me a stronger person. I wonāt go into anymore detail now because but send you hugs and strength to cope.
Will add the ambiguous grief that is felt. Grieving for someone who is still here but not always the person you knew
@Jackie_201112
To add an important one and along the lines that @Chris_22081 mentioned re āthe long goodbyeā
We start grieving early, for the injustice, the loss, the dissociation to time (Dad sat for hours) often dementia sufferers lose context of time and reference points as their short term memory is affected easily and quicklyā¦
TBH who cares if itās saturday or tuesday! Or if thereās a muddle of some words, dates or loss of a wordā¦Dad and I talked with hands and eyes and giggled at made up wordsā¦its just the new normal and who needs labels as long as they and you are safe right?
Sometimes, Dad got upset when new people came into the house, or even guests-friendsā¦but he still didnāt let me fob them off, because Dad was a proud etiquette social manā¦but he collapsed with tiredness afterwards having put on a display of āIām fineā
When Dad interacted with me and Mum, he was there and present. We were the stimulus. It also meant we were his āpromptsā and hence the well known concept of the sufferer feeling like they are being ācontrolledā, we were his Jailors. Prompting + lacking concept of time = nagging for him, when in reality itād been 2-3 hours between lunch and nap
TV thatās uncomplicated, no complex thrillersā¦Dad used to love start trek next generation, or NCIS ā¦simple finite, good solid storiesā¦but then heād say they played the same scene repeatedlyā¦
Iām sharing some of these painful things, because it would be wise to build your support-team for you and her so that you can get 20mins-40mins to yourself every dayā¦with an audiobook / music and fresh air, even if its to get groceriesā¦your Mum may not like it, but sheāll be safe if someone comesā¦
Iām hoping you already have a āsystemā routine in placeā¦to āupgradeā
sending hugs
I also make jokes of G muddling up words. He will struggle for the right one and ultimately say something daft and I just wait then raise an eyebrow and say āare you sure?ā before smirking. It often defuses an awkward situation and I have been known to say things like āyes, I put the fish in the washing machineā then he will say āwhy?ā before I correct myself āoh the freezer.ā He then just says āstop being sillyā and I respond āit isnāt silly, its just mixing up wordsā playing it all down so when he does it, it doesnāt matter. Seems a bit odd, but usually gets us through.
Jackie, are you getting any help, support, or advice regarding Disability Living Allowance and Council Tax exemption?
We are exempt from paying Council Tax.And Mum got all the correct benefits years ago when I officially became her Carer. Im claiming Carers Allowance. I spoke to a neighbour whose in the same boat as me. And she asked me the last time I took a holiday. Its been over 4 weeks since the diagnosis. And nothing has really changed the meals and laundry they are still being done. Mum hasnt been asking repetitive questions and her mood seems to be on an even keel. For now. There is support if I want it. But for now things are continuing as they have been. The same routine.