I hate dementia

weepweeps

weepweeps

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With dementia there is no hope. There is no cure. They talk about living well with dementia but most people live badly with dementia. There are admiral nurses I can phone. They are lovely and call me back but can’t really help with the fact that my mum is poorly and getting worse. It’s so hard for the family. More so than the person with dementia. Watching your loved one disappear in front of your eyes. You wouldn’t let your pet suffer but you have to watch your loved one suffer.

This time last year I had to have my beloved dog Eddie PTS as he had a brain tumour. He was 16.5 years old. I didn’t want him to suffer. I am 100% comfortable with my decision. He had an amazing life and I wanted him to have a good death too.

I wish we could help our loved ones over the bridge too. 😢

I'm sorry if this post upsets anyone. I’m just so sad.
 
weepweeps said:
With dementia there is no hope. There is no cure. They talk about living well with dementia but most people live badly with dementia. There are admiral nurses I can phone. They are lovely and call me back but can’t really help with the fact that my mum is poorly and getting worse. It’s so hard for the family. More so than the person with dementia. Watching your loved one disappear in front of your eyes. You wouldn’t let your pet suffer but you have to watch your loved one suffer.

This time last year I had to have my beloved dog Eddie PTS as he had a brain tumour. He was 16.5 years old. I didn’t want him to suffer. I am 100% comfortable with my decision. He had an amazing life and I wanted him to have a good death too.

I wish we could help our loved ones over the bridge too. 😢

I'm sorry if this post upsets anyone. I’m just so sad.
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I'm so, so sorry 😭 Hugs:hug:

We're here for you, anytime you need to talk ❤️
 
Thank you so much. It’s awful. I wouldn’t wish this on my worst enemy. 😢
 
weepweeps said:
Thank you so much. It’s awful. I wouldn’t wish this on my worst enemy. 😢
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I know.
I was raised in a fairly liberal family and my parents always told me that we don't let our animals suffer, and we don't let family members suffer.
I grew up being totally aware of things like assisted suicide, and my parents always said they would choose their own time and place and do it on their terms.

I remember the first time I mentioned this to someone else and they were horrified.
Up until that point I had truly believed that if a person got sick and would never get better, they would be allowed slip away peacefully, like my childhood pets.
I was so shocked that we expect the people that we love to suffer in a way that we would never let our precious pets do.
Thankfully living in Switzerland this is now still the accepted way of things, and most people i know here are members of one of the organisations that gives you some control over your end of life decisions.
It's like I always say with our animals - we are aiming for quality over quantity.

I am sorry you are struggling with this right now.
Try to be kind to yourself, and remember that it's ok to be sad.
What you are going through is awful. Give yourself credit for everything you are dealing with, and try to make some time to do something that is just for you.
 
Dementia is awful. I never had to witness my Mum and Dad suffer in this way. My friend (who's basically my sister I've known her that long) had to witness both her Mum and Dad suffer with dementia and it almost destroyed her.

What I don't understand and can't come to terms with is, if you let an animal suffer with dementia like you have to with a human you would be prosecuted and thrown in prison for animal cruelty for not PTS, if you PTS a human you get thrown into prison for "murdering" them. There is no quality of life at the end and if they knew how bad they had become they would be horrified.

My heart goes out to you at this difficult time.
 
Thank you for all your love. It means a lot. It really does. I am blessed with two sisters who I love dearly and we are in this together with our dad. I don’t know why my country is so against assisted dying. I don’t believe it’s suicide It’s just speeding up the inevitable to save suffering.
 
weepweeps said:
With dementia there is no hope. There is no cure. They talk about living well with dementia but most people live badly with dementia. There are admiral nurses I can phone. They are lovely and call me back but can’t really help with the fact that my mum is poorly and getting worse. It’s so hard for the family. More so than the person with dementia. Watching your loved one disappear in front of your eyes. You wouldn’t let your pet suffer but you have to watch your loved one suffer.

This time last year I had to have my beloved dog Eddie PTS as he had a brain tumour. He was 16.5 years old. I didn’t want him to suffer. I am 100% comfortable with my decision. He had an amazing life and I wanted him to have a good death too.

I wish we could help our loved ones over the bridge too. 😢

I'm sorry if this post upsets anyone. I’m just so sad.
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It is hard, my father in law suffered with Alzheimer's, the worst for us was just after my mother in law had passed away, he remembered that but couldn't remember the people who had been to the funeral and then didn't understand why my sister in law was upset when he was complaining about not having seen family for ages.
It's hard watching them disappear, they look the same but they really are not.
Sending you hugs 🤗
 
Dementia is really awful. We had a wonderful neighbor who was one of the pioneers of the transplant program pass from it. She was such a smart woman and it was sad to see her mind slip away. My sister and I would go over and "babysit" her so her husband could get some sleep sometimes. We did have fun when we watched her as our mother would send over her button box. Miss Nancy, my sister, and I would spend a ton of time digging through all the buttons and talking about them.

If any of you are interested, there is a book called "The 36-Hour Day". My mom read that book and loved it as it gave her a better perspective of things.
 
I'm so sorry, we believe my Dad is in the early stages of it. His mother had it very badly too and even though I was just a child still when she passed, being left with her definitely contributed to my C-PTSD :/ luckily he is moving in with my brother soon, so we're looking after a parent each now, I'm glad he won't be on his own much longer.

It really is such a cruel illness 😔
 
I'm sorry you are going through this. I have long believed we should be able to end the suffering of our loved ones as we do our pets whatever illness they suffer from. My grandmother and my father had dementia it's so very hard to witness. My mother had Parkinson's and lost her memory in the later years. I will never understand the need to prolong the suffering of people with drugs when they are not living, only existing.
 
piggieminder said:
I will never understand the need to prolong the suffering of people with drugs when they are not living, only existing.
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Me neither. It's the quality of life that surely must be measured not the quantity of life when somebody is suffering and won't get better.

My friend had a neighbour who was dying of pneumonia (the body's way of ending a life) and he was stuffed full of antibiotics and the poor sod "lived" for another 6 months he had no quality of life and was just existing.
 
weepweeps said:
With dementia there is no hope. There is no cure. They talk about living well with dementia but most people live badly with dementia. There are admiral nurses I can phone. They are lovely and call me back but can’t really help with the fact that my mum is poorly and getting worse. It’s so hard for the family. More so than the person with dementia. Watching your loved one disappear in front of your eyes. You wouldn’t let your pet suffer but you have to watch your loved one suffer.

This time last year I had to have my beloved dog Eddie PTS as he had a brain tumour. He was 16.5 years old. I didn’t want him to suffer. I am 100% comfortable with my decision. He had an amazing life and I wanted him to have a good death too.

I wish we could help our loved ones over the bridge too. 😢

I'm sorry if this post upsets anyone. I’m just so sad.
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I totally understand, my 93 years old Mum has vascular dementia after a stroke. I have lost the mother and friend I knew. I’m all for a “good death” when and were you want iit. My mother is constantly anxious, locked in a scary world, some days are good but most are quite awful for her. But they’ll keep pumping her full of drugs for her heart, her cholesterol, blood pressure glaucoma and all the other health issues she has so she can get a card from the King for her 100th birthday! 🙄
 
BIG HUGS

Dementia is horrible because the person you love is disappearing bit by bit. :(

My mother-in-law died with it. We are pretty sure she kind of gave up wanting to live when she realised deep inside that she would never come home from hospital and she was aware that her head was not right; plans were underway to refer her to a closed section. She had another stroke shortly before she died and then developed resistent pneumonia which was the official cause of death. :(

Now my own mother in Switzerland has officially been diagnosed with dementia two years ago pretty much to the day after a more thorough check than the first one (on the instigation of my sister and me) some years ago. So far it is thankfully still in the milder stages and her medications do work at the moment; short term memory issues are the most noticeable issue. She is currently in a good place mentally in terms of acceptance that she no longer has to be perfect and have everything under control.

What she can no longer cope with - and hasn't coped all that well with for quite a few years now - are any major changes to her daily routine. Unfortunately, this also includes any visits from me.
She would love to see me but she dreads a visit more... In the whole time since the pandmic has hit she has never once asked when I was coming to visit her - and that says it all because that is not at all like her. :(
Because of the pandemic she is also very afraid I would carry in any bugs. I feel very bad leaving my mum fully on my sister's doormat (who also has Long Covid, a similar type to me) but I am not going to do my sister any favours by upsetting my mum with a short visit, which is all I could do. It is tough and heart-breaking. :(
 
Oh I’m so sorry. It’s just awful. I’m an older adult MH nurse and most of my patients I work with are dementia patients. I also have first hand experience from within my family too.

It’s a truly awful disease and often towards the end is much harder on the loved ones than the person with dementia. I always tell people, you are grieving a loss of the person you loved whilst their body is still here and then eventually you have to grieve all over again. It’s so cruel.

Sending love to everyone going through this.
 
weepweeps said:
Thank you everyone. I feel a bit stronger this morning. You are all so kind. Sending hugs to everyone who is dealing with this too ❤️
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Your post really made me think. My good friend’s dad had been recently diagnosed with two types of dimensia . He’s just been awarded a package of nurses twice a day and is managing well, but I think she can see signs of what you are going through now. I can’t be there in person to support you, but in respect for what you’re going through and your mum, I’ll be extra careful to support my friend xx. I’ll be praying for you both xx
 
Ruth1 said:
Your post really made me think. My good friend’s dad had been recently diagnosed with two types of dimensia . He’s just been awarded a package of nurses twice a day and is managing well, but I think she can see signs of what you are going through now. I can’t be there in person to support you, but in respect for what you’re going through and your mum, I’ll be extra careful to support my friend xx. I’ll be praying for you both xx
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Thank you. Yes your friend will need your support as the disease progresses. She’s lucky to have you. 😊
 
I am very sorry that you’re feeling sad (((hugs))) Dementia is a horrible disease. My husbands grandad who is in his 90’s has it. He’s in a home, a place he said he would never go and is a shadow of his former self.

We don’t live close by but every time we go and see him, he has deteriorated further. It’s all very sad seeing loved ones disappear before your eyes 😞
 
@weepweeps I think it's really important that you have a good support network around you. This forum is fantastic for that 🥰

This may sound odd, but I actually worry more for my mum (who is caring for my grand mother, aka gg). My grand mother has both dementia and Alzheimer's. But my two aunts voted and she ended up living with my mum. My mum still has a full time career, kids and grandkids to take care of and caring for my grand mother is actually putting a lot of stress on her. I'm really worried about my mum's health too. it really is tough on those around the people with the diagnosis. I do feel that we will get to a point where we need additional care for my grandmother than only a correct facility can provide - however, moving her there will mean battling with my mum's guilty conscience first (she said she would feel terrible moving gg into a home as she knows she would have never wanted that). But the disease is progressing (gg doesn't always recognise me anymore).
Myself and my brother are doing all we can to help (also around careers, animals, businesses, children etc), to try and support my mum.

We have noticed recently that gg's speech has deteriorated; it's really hard to understand her now. So we came up with the idea of pictures on card (food, water, toilet) etc so she can also point to what she wants. She also gets very anxious (especially around sunset - which is obviously much earlier in the evening now as we go into winter).

It's been really helpful to bounce ideas off of other people (for example, finding a solution to the speech problems). So please don't ever feel isolated in what you are all going through. You are more than welcome to also contact me at any time if there's anything you want to offload.


Here is a pic from March last year, when Koda and I did the sponsored walking to raise money for Dementia UK
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When you are a caregiver it is so vital to care for yourself too. If there is a caretaker support group that you can attend, please do. Is there a program in the UK that gives family caregivers a break like a respite caregiver? Here in the US there are all types of respite caregivers; they have them for dementia patients, autism (I haven't used this yet for my child as we have family and friends that help out), and even baby cuddlers for babies in the NICU.

When I worked in a doctor's office, it was really sad to hear the guilt that caregivers have at taking any time for themselves. I found the UK alzheimers website and included a link for caregivers. For anyone in the US, I included the link for caregivers.

Carers: looking after yourself

Caregiving
 
Thank you all for the support. My dad is getting very tired. My sisters and I have offered thousands of times to get their shopping or sit with mum while he does something else. But so far he hasn’t wanted any help. Mum sleeps a lot now. But it means that he can’t plan shopping or doctor appointments as she may not get up that day. She was talking about her husband to him he other night. So sad for him that she didn’t recognise him 😢. Shes started having long conversations with nobody. Not washing or changing clothes often. But all in all she is actually quite happy now.
 
So sorry. It must be so hard. I lost both my parents quite suddenly when I was young so I did not go through the gradual decline of loved parents which must be heartbreaking. Whatever age or illness, why is that we seem to retain memories of them as they are or last were rather than remember them when they were most vibrant? Try to keep those memories in your mind. I cannot offer advice, only offer love and support ❤️
 
Aww thank you. I’m sorry you lost your parents so young. When mum finally makes her way over the bridge I will definitely try to remember her in happy times.
 
Dementia is one of the cruellest illnesses.
It causes so much heartache for everyone touched by it.
It’s a grief that is always raw.
Holding you in my heart ♥️
 
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