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End of Dementia journey, start of? - Page 7 - Carers UK Forum

End of Dementia journey, start of?

For anyone who is bereaved or no longer providing care.
156 posts
I've been having a few over anxious moments. ie, yesterday my tablet decided to update without me clicking to have it? Knocked my email out of sync. I was checking on a savings a/c with card reader, and locked myself out grr. 2 grandsons were here which is lovely, but they were niggling about food we could have. Unusually the youngest was sulking and teary about it. Middle one phoned his mum, unbeen known to me. I wouldn't have allowed that. Sorted, we decided on KFC, eldest grandson was going to collect it. He came for the money, and told youngest off and started him off again! I've never snapped at my grandchildren, but I did a little at he eldest, asking why he felt the need to chastise. He said sorry to him,and all was ok. I normally just sort things amicably with then but yesterday it got to me. Guilt monster kicked in. I did say to the 2 elder ones that it's only 6weeks since their Grandad died, and we all still feel raw, including their parents, aunty and cousins. I'm sure they felt relieved it was actually said. We enjoyed the naughty KFC after that. DD was having a rare evening out with her hubby. He sent my a video of her dancing.and laughing. Much needed and really cheered me up to see it.Hubby would have loved to have seen it. That thought has made me teary.
Had a good sleep, decided to close that savings account, as it's a pain, put it into my building society. It's my money, so why was I so anxious?!Tablet seems to be working ok in fact better? Emails are fine. This morning at 7.45 I went into garden, old pj bottoms and old top, not showered, and planted some plugs that arrived yesterday. Cut back some stragglers on petunias, had a faff with other containers and enjoyed listening to the birds. Oh and the boiler was serviced yesterday, and the bathroom fitter called in with the plans.
Today is another day, and so far I feel less anxious. Going to have my cuppa, do a bit of ironing then potter ( or not!)
Hopefully a nice few days ahead. Meeting friends on Tuesday and Thursday, eldest grandson coming on Wednesday afternoon to help me put some fresh bark on a part of the garden. Sister visiting on Friday. Head clearing day today, perhaps.
Hi Pet, important to talk with grandchildren about how all miss Granddad and how all feel. Youngest probably more sensitive and teary due to dealing with this. Eldest and yourself, less tolerant too. Totally understandable.

Sounds like you have some nice things arranged next week.

Melly1
Well, I haven't received a reply from the nursing home ( emailed) so contacted the CQC again. This time in more detail about my concerns regarding Hubby's last month in hospital. They replied within the hour! They are passing it on to the inspector of the unit hubby was residing in. Seems the concerns will be addressed. I'm hoping that it will encourage a better attitude from the nursing staff, the right for other relatives to have a reasonable response as to why they cannot complete a nursing task, and not just the answer 'no'. Encourage re training on bereavement. I don't feel I can do any more now, won't bring hubby back, but I feel have somehow had justice for him and my family. If it helps that others won't have such treatment, then its worth me contacting them. Sad that after all the time he was with the home it came to this.
Pet, well done for re-contacting CQC.

It is a shame re the nursing home, for the nursing staff let down the residents and the reputation of the care staff, the majority of whom gave hubby excellent care.

Melly1
Now its school holidays ( DD1 is a teaching assistant) we are making plans to scatter Hubby's ashes. Another kick that he is no longer with us.
Last night with the horrendous storm it felt really odd being on my own. I'm not frightened particularly of storms, but many years ago the house was stuck by lightening and he certainly took charge and looked after us. Stirred a bit of anxiety in me I must admit. Phone by the bed,family not far away and all was OK, am pleased to say.
That's another first then, Pet. First major thunderstorm coped with on your own. It was dramatic one wasn't it, the lightening lit up the whole house and the bangs were very loud.

Have you and DD1 decided where you are going to scatter hubby's ashes?

Melly1
It was a first Melly. The way it feels today could there be another on looming?! It lit up my bedroom too and just as I thought it had ended it started again. Same for many of us.
DD1 and 2 have decided Hubby's ashes are going by my parents joint grave. They loved him, and he them. Asked my sister out of courtesy and she has no concerns at all.Her first baby died of cot death and he is in that cemetery too. Eldest grandson wants to be with us. So the grieving process goes on. We are battling on!
The storm was horrendous, I was worried that the enormous hail stones would go through my conservatory roof! Fortunately, all seems OK this morning.
Pet66 wrote:
Wed Jul 24, 2019 4:18 pm
So the grieving process goes on. We are battling on!
I think we have known each other long enough for you to know that not my intent with this post to offend or upset you. I apologise in advance if it does, and will remove this post if you request it.

I cannot begin to imagine all of your feelings but some will be similar. It is almost 2 yrs ( in Nov ) since hubby was last home with me. He spent almost 6 months on a dementia assessment unit, great place, and from there was admitted to a nursing home. His needs were so great that had I brought him home I would have actually placed him at risk.
The loneliness, frustrations have been immense, and in a way it feels like a 'living bereavement'. It is now 3 yrs since he has had full speech, 2 yrs not being able to recognise me apart from odd glimmers. His twinkle in his eyes now blank and from when he opens his eyes, till he goes to sleep, everything has to be done for him. I feel robbed, especially just now with this glorious weather.
Hubby would have been in the garden from morn till night pottering around. We would have been planning a break away and although I want others to continue with their own lives, I feel so angry at times that we cant. I miss the companionship, the personal touches and having someone to talk to about daily events. Our girls are ages 35 and 34, breaks my heart what they are going through, as they are as close to him as a vest would be :P .

Having cared for family members all my life, again like some of you here, it was always our intention that when possible we would do something for ourselves. We never got that chance with his diagnosis of Alzheimers at 51 yrs old.
I visit every day and we are like fish out of water. He is only 59 just gone and rest are in their 70's, 80's and older. Many have no family/friends that visit, so as most of you here have done in the past, we take them to our hearts. Staff are great and a massive support which helps.

Caring never phased me but personally I feel that Alzheimers is the most cruel disease ever. For those with it, and those watching.

I may not be online as much these days, but always around at some point. Over the last 14 yrs on this forum I have read many stories from carers and our numbers are increasing a lot. I would say the situation out there is worse than it has ever been, and without scaremongering, not as bad as what is to come.

Feel free to pm anytime.

Love to everyone,

x x
Hi Rosemary
Your post doesn't offend me, not sure why you feel it would?
Hubby was older than your husband, the dementia kicking in when he was 69. He died 4 days after his 74th. 5 long hard years, He too went to the nursing home from the assessment unit. Never returned home. However apart from a 62 yr aged woman he was the youngest in the home. Had other complex needs because of strokes and the bowel,/potassium issues. He is at peace now. Our battles for him are over. Miss the man he was, not the shadow of the man he became. Lost the focus of seeing him regardless. Our 2 daughters are heartbroken, along with grandchildren.
When I say battling on, I mean going through the grief of not only his passing, but how the illnesses made him. Am getting on with things that need doing, slowly.
I hope I haven't come across as whinging and woe is me, because that never was my intention.
Helps me to share how I feel although much less now, and was hoping that sharing may help others.
I understand the heartbreak you have, having been through it, and seen many relatives of others with pain in their eyes.
I'm thankful though that hubby didn't have any realisation that he had dementia, unlike Motor Neurone sufferers.
Wish I knew what to say to help you. Its a long hard goodbye, and strength and love sees us through it. Sadly with some relatives, they can not cope and retreat.
156 posts