New here, Grieving and broken after mums Diagnosis

[Psslsjr]

Hi all, I have a few different experiences of dementia with loved ones who passed, both different, one that dragged on for years, one that ended in a person being none verbal after a stroke for years. But my mum is 87 years old, until earlier this year was pretty mobile, and still with it to a degree, we had noticed over the past few years, her slight confusion, adamant nature and aggressive behaviour at times, and she was referred to the local community memory clinic which took 2 years to get, then came the repetitive questions, perhaps 5 to 6 times in an hour asking after family members, this recently occasionally includes her Uncles who passed over 50 years ago, she had a fall which resulted in a broken wrist in March, she couldn't remember the fall, kept asking what happened her arm, it was a very bad break, due to her osteoarthritis, she was put in a split cast, by the next morning she had removed the cast and we had to take her back to hospital, her mobility began to decline, she began walking with a gait, she became frustrated, angry, confused, fast forward to 8 weeks ago, we found her on the ground, she was taken to hospital by ambulance and we were told she had a hairline fracture on her pelvic, and was sent home as deemed to old to operate on, the next day I went to see her in the afternoon and she was still in bed, she had soiled herself and her speech was slurred, again taken and admitted to hospital where she is still, due to another fall in hospital which has resulted in another broken wrist, again she couldn't remember it happened when I asked her a few hours later did you fall?, the hospital did a CT SCAN and sent it to the memory consultant, we had her review appointment 3 day's ago, and although we were expecting some form of dementia, we were not prepared for the diagnosis of Mixed stroke related vascular dementia and Alzheimer's, because she still knows us all, can hold a conversation, feed herself, but requires help with mobility issues, some personal care is very occasionally incontinent at the minute and with decision making etc, we are now left with the dilemma and awful decision as the hospital want to discharge her with either bringing her home where she wants to be or a care home. The prognosis because of her age and scans have completely broken me, I haven't stopped crying it comes in waves, we were told without sugar coating it's advanced and she will probably die within the next 6 months to 1 year max, which I know deep down is better than her suffering more for years with this awful disease but doesn't change the heartache, she has no idea of any of this, and wouldn't benefit from knowing, Given the fact that she is still so ' with it ' as in she recognises us all and chats etc, I just can't comprehend that she could be gone so soon, I naively read up on info thinking it would be year's of watching her slip away and awful as that is given that most people are diagnosed younger and suffer longer, I feel selfish for this new found grief, I'm trying to hold it together visiting her daily in front of her so she doesn't see it in my face, but I'm really struggling with that knowing what I know. I don't receive much emotional support from family and not one so called friend as checked in on me once, which I feel I'm also disappointed and angry about, Has anyone went through this grief, not the grief that people talk about losing the person you knew, then again once they die, because I very much still ' have her ' this is a deep sadness/grief of knowing she'll be gone soon, I'm completely broken, I'm not sleeping because I can't get her out of my mind, everytime I leave her I hug her like it's the last time. I know everyone is different but for anyone who was dealt something similar in the same stage, does this initial grief of prognosis pass and you learn to cope until the time comes when you actually do lose them, and you greave all over again or did it make it a bit easier when it did happen? We have been told another fall could possibly be the end, or that a stroke or heart attack will probably be the cause of death, but did your loved one decline rapidly towards the end, ie like we read with the being bedridden, unable to eat drink talk etc, I pray like most people that when the time comes she goes peacefully in her sleep, and doesn't suffer, but I know this is quite rare and a blessing to have. I'm just full of the not knowing and worry, also that my mental health will decline as I do have a history of depression and I am unable to cope with thing's. Sorry for the rambling and I hope this makes sense.

 

[Grannie G]

Hello @Psslsjr

Allow your mother to be transferred into a care home. She is far too poorly for you to look after single handedly and whatever care package she is given will not be enough.


If she is in a care home, at least you will be able to visit to give her comfort without the responsibility of physically caring and if it gets too much for you you can shorten your visit and leave it until another day

 

[canary]

It is always overwhelming when you first get the diagnosis @Psslsjr , but most people get the diagnosis much earlier. Your mum has obviously had dementia for many years, but you didnt know this and were not overwhelmed and havent lived with the sadness of knowing. Now, however, she is in advanced stage and you have got everything all at once and it is hard.

I know everyone is different but for anyone who was dealt something similar in the same stage, does this initial grief of prognosis pass and you learn to cope until the time comes when you actually do lose them, and you greave all over again or did it make it a bit easier when it did happen?

As you said - everyone is different, but my experience is that mum (with Alzheimers) knew me and retained her personality right up to the end. I think that what you are experiencing at the moment is what is called Anticipatory grief. It is something that all carers of someone with dementia experience and it is only once they have actually died that it can be fully resolved, but you may well find that you do feel better after the initial shock passes. Be gentle with yourself - it has all come as a great shock to you.

By the way - I agree with moving her to a nursing home. No-one wants to go into a home, but there comes a time when needs trumps wants. Caring for someone with dementia is much, much harder than you would expect and it has broken many people. Even with the best care package there would be many hours when she would either be on her own, or you would be dealing with her on your own. My mum didnt want to move to a home either, but she settled there and I could become her daughter again and not a frazzled sleep deprived carer.

 

[LouiseW]

Hi, grief is a really difficult thing to live with and having been through periods of grief caring for my Dad I can tell you that whilst it is a horrible horrible thing it does come and then go in cycles - usually in tandem with the next stage of Dads decline.
I'd advise you to take really good care of yourself and follow advice on coping with grief to support yourself through these tough times thatr your family is facing.

 

[leny connery]

what about getting help through grief counselling? You are a true , loving and lovely daughter to your mum.
sending you hugs and love. Hang in there.