Dementia Awareness

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Lord Tyrion

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For council tax purposes, the partner of someone with dementia is a single person. I don't see why the same wouldn't apply to the COVID rules.
Assuming you aren't already support bubbling with anyone else and all are comfortable with the risks, why not bubble with them and have them inside.
They are already in a bubble with my SiL, she is single. I don't believe your working out fits, although I like how you got there.
 
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Lord Tyrion

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I watched the Jackie Charlton programme the other night. It was heart breaking. It was not the same as what Missis T is going through with her FIL but nigh on identical if you know what I mean.
ironically I was looking for something the other day and came across some photos and tickets from 1973 when I went to watch England school boy U 16’s play Scotland U 16’s at the empire stadium at Wembley. I found a photo of me with Jackie Charlton. He looked massive.
I was in a massed huddle/queue with him at Newcastle airport a few years ago. It was an easyjet scrum, 5 flights booking in at once, total carnage. Anyway Big Jack was stood bolt upright, head and shoulders above everyone else. Absolutely serene.

He is/was hugely loved up here. Some people are liked but with the odd bad story or some are famous but with plenty of anti comments by those who have come across them in person. The comments and stories about him are universally positive, I've genuinly not heard a bad one. I'm not sure strikers of his era would quite feel the same though 😆.
 

Tashyboy

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I was in a massed huddle/queue with him at Newcastle airport a few years ago. It was an easyjet scrum, 5 flights booking in at once, total carnage. Anyway Big Jack was stood bolt upright, head and shoulders above everyone else. Absolutely serene.

He is/was hugely loved up here. Some people are liked but with the odd bad story or some are famous but with plenty of anti comments by those who have come across them in person. The comments and stories about him are universally positive, I've genuinly not heard a bad one. I'm not sure strikers of his era would quite feel the same though 😆.
Am the small one with dark hair 😁
 

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Robster59

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An update on my FIL. He has been deteriorating over the last few months. I won't go into details for his personal privacy but you have to keep an eye on him more and more. We both work full time and so have to balance work with looking after him. To try to take the stress off my other half, I give him his morning pills, get him up, bring him his breakfast, take him for a daily walk and put him to bed at night as well as keeping an eye on him during the day. As you can imagine it's tiring physically and mentally. My partner went for an update with the doctor on Friday and took him through his current condition. I think she also broke down in the discussion. The doctor has said he believes he now needs 24/7 care. That basically means him going into a home so that appears to be our next step. I'm still unsure how to feel about this as, although he will get the care he needs and it will give us respite, I still feel guilty about doing it. He's going to be put in a place away from the only family he has with people he. doesn't know. However he will be able to interact with people and get the care her needs. It just feels really strange.
 

toyboy54

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Rob....Please don't think me callous or cold, but is it not time for you and Mrs.Robster to try thinking about your own sanity and health?
Not quite the same scenario but my old man loved going into respite care and being looked after,meeting others,interacting(still had his cans of Guinness in his locker right enough!
Hope you're both o.k. in what must be a really shitty time for you.
You've got my details if you want to blow up/have a rant/get a game...Tak Tent!
 

williamalex1

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Rob....Please don't think me callous or cold, but is it not time for you and Mrs.Robster to try thinking about your own sanity and health?
Not quite the same scenario but my old man loved going into respite care and being looked after,meeting others,interacting(still had his cans of Guinness in his locker right enough!
Hope you're both o.k. in what must be a really shitty time for you.
You've got my details if you want to blow up/have a rant/get a game...Tak Tent!
Great minds eh!, I just sent Robo a PM saying much the same :eek:
 

Tashyboy

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Me and Missis T had a run out to Bury market yesterday. Took me ma and pa and we recharged our batteries. About 7.15 last night we got a phone call from Ma in laws phone. A neighbour of the in laws was ringing saying Ma in law was in a mess. FIL had spent a day saying MIL was not his wife. It had tipped her over the edge. Me and Missis T have said it for a bit. miL does not handle his condition well.She is confrontational. She does not diffuse the situation. And she can twist FIL condition to make it about her.
 
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Lord Tyrion

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@Robster59 , guilt? No, no, no. Don't feel guilty. Not only do you and your wife need your own life but if your FiL needs 24hr care then that is what he needs. In reality you can't offer that level of care, how could you? What is happening now is best for all parties. What you are feeling is natural but what you are doing is 100% correct.
 

RichA

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As above. We went through all the same feelings. In retrospect, a month "too early" would have been better than 2 months too late, when it came to actioning that incredibly difficult decision.
None of you may thrive as a result, but you should have a more survivable outcome.
The staff in my mum's small, rough and ready nursing home were about the most professional and caring humans I've had the privilege of meeting, in awful circumstances.
 

Ethan

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A diagnosis of dementia is often easier in retrospect even when it was quite uncertain prospectively. Nobody should beat themselves up for that, it happens all the time. The same is true fo a bunch of neurological illnesses, because many share symptoms with one another and overlap with normal age-related changes too.
 

Robster59

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Thanks everyone. This forum as a sounding board has been very helpful to me and the support and comments are all greatly appreciated.
We know it's the right thing to do and the wheels are in motion to make the transition.
It's a funny thing, but I've known my partner for 21 years and moved to Glasgow to live with her for the last 17. In all that time her Father has been living in the granny flat at the back. In all honesty I don't think she thought he would still be here as he has had numerous health problems, heart conditions, etc. During that time he's been a cantankerous old sod, he and his daughter have never really got on (it was her Mum who was her best friend), he's always viewed me with suspicion and has accused me in the past of planning to take his grandsons inheritance from him (when he said this to his grandson he laughed out loud and said if that's the case I must really be playing the long game as I've waited 20 years so far :LOL:).
We have never actually had lived together with just the two of us. He's always been there. Either in the background or more prominently now as his needs increase. So I know that we can genuinely feel we've done everything we can for him and looked after him as well as we can. Yes, at times it's exasperating. At times you just walk downstairs in the morning know that today is going to be like every other day as your entire routine revolves around him. Even going anywhere on business has to be carried out in advance. We can't plan to go anywhere together for more than a couple of hours. But at times when you see him and you know in his condition he's totally helpless, and relies on what you do and say that you see the impact of this terrible illness. He's still knows enough to know he's losing it. That must be so difficult for him to be in that intermediate stage.
Thanks again to everyone for your support. As much as anything else, this is a sounding board for me to just let some of it out.
 

oxymoron

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An update on my FIL. He has been deteriorating over the last few months. I won't go into details for his personal privacy but you have to keep an eye on him more and more. We both work full time and so have to balance work with looking after him. To try to take the stress off my other half, I give him his morning pills, get him up, bring him his breakfast, take him for a daily walk and put him to bed at night as well as keeping an eye on him during the day. As you can imagine it's tiring physically and mentally. My partner went for an update with the doctor on Friday and took him through his current condition. I think she also broke down in the discussion. The doctor has said he believes he now needs 24/7 care. That basically means him going into a home so that appears to be our next step. I'm still unsure how to feel about this as, although he will get the care he needs and it will give us respite, I still feel guilty about doing it. He's going to be put in a place away from the only family he has with people he. doesn't know. However he will be able to interact with people and get the care her needs. It just feels really strange.
Please do not feel guilty , it is the best for HIM and it is the best for YOU in the long run. Do not feel any guilt you have obviously done your utmost and cared for him but now he needs that bit more .
Your partner will need all your support and i am sure you will see it is best in the short and indeed long term.
All the best , i hope he gets a good home and they provide the care he needs .
 

toyboy54

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Great minds eh!, I just sent Robo a PM saying much the same :eek:
As you say Bill...great minds!
Maybe the 3 of us can get together and have a game(and rant about various)
Should bring Rob's lady along as well--just to get out (and laugh at the golf/the girl sounds as if she needs some amusement- I'll spring for the day/food!
 

clubchamp98

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Best advice I had is treat it like a broken leg.
You are not equipped to deal with a broken leg so you need someone to help you sort it out.
In the long run you have done your best, that’s all anyone can do.
He might enjoy meeting new people and when you visit this will show.
So don’t beat yourself up over this it’s a natural progression of his needs.
 

Tashyboy

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We want what’s best for our parents, that’s a given. But there comes a stage where what we can do for them is not he best. That’s where the guilt comes in and it shouldn’t.
Missis T through her role was adamant that some elderly people were shipped off to nursing homes so there adult kids could have a quieter life, plus they hardly had any visits from them once in a nursing home. Missis T said it was heartbreaking at times talking to her elderly patients who were making excuses for there kids not visiting when they lived so close. There’s a massive difference in that and not being able to look after parents with dementia.
As I speak Missis T is on a conference call with her sister and brother re FIL. Its gonna be another interesting evening.
On a personal note, thanks for keeping this thread going as a lot of what is happening re FIL has been mentioned previously and has given us the heads up on numerous occasions.
 

Piece

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I've been keeping a watching brief as my Dad has dementia, diagnosed 5 year ago. Things over the last few months have gone rapidly downhill, to point where he was admitted to hospital nearly two weeks ago. He collapsed on the toilet in the middle of the night and my Mum could do nothing but dial 999. Leading up to the event, he had been coughing regularly for no real reason - turns out he has several blood clots (major one on the lungs) and now diagnosed today, a lengthy aneurysm behind the heart. He's on meds for the clots, but the aneurysm is a 50-50 call whether he is left as is or surgery required. Long and short he's too frail currently to undergo surgery (this would only be after several referral visits to St. Georges) and thus hope he carries on and the artery holds. No-one knows how long the clots or aneurysm have been there; fix the clots, less pressure on the aneurysm?

Regarding the dementia, he's mid to late stage and things are starting to shut down. He's relatively fine though (lacking of eating - it's mostly liquid), but as you guys all know, it is really affecting those that do the caring; e.g. my Mum. She has reached her tipping point and understandably keeps breaking down as she has been unable to cope. She can't, and importantly doesn't want to, carry on. She is dreading him coming because she's not in a fit state mentally or physically to cope and although he is a quieter and happier person, he is a different person that my Mum has no affection for. A bit brutal but very understandable. I think at the end of this week he will be discharged and we need to work with discharge team to create a care plan. As a family we will be doing all we can to ensure my Mum is the priority and Dad is the second. We are pushing for 24/7 care in a home to give her that freedom and space, and bluntly, give her her life back in her later years. But it's down to needs, not want, and money. For info, Dad is 88 soon and Mum is 83.

To end this post he's been cared for wonderfully in the NHS hospital.
 

clubchamp98

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I've been keeping a watching brief as my Dad has dementia, diagnosed 5 year ago. Things over the last few months have gone rapidly downhill, to point where he was admitted to hospital nearly two weeks ago. He collapsed on the toilet in the middle of the night and my Mum could do nothing but dial 999. Leading up to the event, he had been coughing regularly for no real reason - turns out he has several blood clots (major one on the lungs) and now diagnosed today, a lengthy aneurysm behind the heart. He's on meds for the clots, but the aneurysm is a 50-50 call whether he is left as is or surgery required. Long and short he's too frail currently to undergo surgery (this would only be after several referral visits to St. Georges) and thus hope he carries on and the artery holds. No-one knows how long the clots or aneurysm have been there; fix the clots, less pressure on the aneurysm?

Regarding the dementia, he's mid to late stage and things are starting to shut down. He's relatively fine though (lacking of eating - it's mostly liquid), but as you guys all know, it is really affecting those that do the caring; e.g. my Mum. She has reached her tipping point and understandably keeps breaking down as she has been unable to cope. She can't, and importantly doesn't want to, carry on. She is dreading him coming because she's not in a fit state mentally or physically to cope and although he is a quieter and happier person, he is a different person that my Mum has no affection for. A bit brutal but very understandable. I think at the end of this week he will be discharged and we need to work with discharge team to create a care plan. As a family we will be doing all we can to ensure my Mum is the priority and Dad is the second. We are pushing for 24/7 care in a home to give her that freedom and space, and bluntly, give her her life back in her later years. But it's down to needs, not want, and money. For info, Dad is 88 soon and Mum is 83.

To end this post he's been cared for wonderfully in the NHS hospital.
Very similar to my parents.
In the end the carer needed caring for.
The discharge team won’t let him out unless there is adequate provision.
You need to stress to them your mums feelings, as she might not admit it to strangers.
Tough time ahead.
All the best.
 

RichA

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Good luck.
If your father is going to have complex ongoing medical needs, it might be worth asking social services at the hospital about a continuing healthcare assessment. We did it with mum and her nursing home was fully funded by the NHS - a huge relief for Dad. Link below...
https://www.nhs.uk/conditions/socia...-work-and-benefits/nhs-continuing-healthcare/
Dad was like you're describing your mother. Kind of grieving for a lost loved one who was cruelly still living. Dementia does have its own personality that replaces that of its victim.
Stay strong brother.
 
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