Dementia Awareness

[Tashyboy]

Well.................
2 days after the FiL passed away, I got a call from my brother. My mum (98) who still lives at home, had a fall on the 4th. To give some background, my brother is her main carer, and she has an NHS carer come around once a day plus meals on wheels. Only a week before, I had seen my Mum as I was driving down to see my kids and spoke to my brother. He's 70, has a wife, daughter and granddaughter with learning needs, and it looks like it is really stressing him. I spoke to him separately and said he really needs more help, but he basically stonewalled me and said he's always done it this way, and isn't going to change now. I got in contact with social services and spoke to them about my concerns, and I was in this process when I got the call from my brother. Thankfully she had an emergency button which she pushed and help came around. They called my brother, who lives about a mile away, who came around. She had to wait for an ambulance, which then took her to the local hospital. She was then in A&E for a number of hours in a queue in a corridor before she could be seen and then was taken to a ward. Once on the ward, I rang to see how she was. The nurse on the ward said that she had been diagnosed with Early Onset Dementia, which came as a surprise to me. He also said she seemed to be shouting a lot (she is deaf so talks loudly) and was talking a lot (that's my Mum's default position!). Surprised at this, I called my brother, who also said he knew nothing about this. The following day I spoke to the main nurse on the ward who advised that it seemed the information I got the previous night was a bit overstated. On her arrival at the hospital, they had done a CT Scan because she had a fall, and an examination of the brain showed indications of Early Onset, but they can't officially confirm until they do the full dementia test. However, it didn't surprise me as we had seen the way my FiL got as he started on the dementia path. She is now struggling to walk and is having to go through physio before she can be returned home. We then got a call from the hospital yesterday to say that my Mum had contracted Covid. She is not showing symptoms as yet, but it is obviously a concern.
When she does return home she will have to have her number of carer visits upped to 4 a day so that is a battle I am having with Care and Social Services at the moment.
Still, we have experience of doing this with the FiL.

Proper feel your pain. Went around to in laws after a little walk on Monday. I received a phone call from a pal who ended up in hospital during his 50th birthday party. Anyway I went into the kitchen to take the call. When I came out Missis T was showing FIL A memory photo album we bought him 2 Christmas ago. I sat down and he Said “ yes but how long have you being seeing him/ me. Missis T said “ 41 years ago”. ” well it would of been nice if you had told me”. We went through the family. He never knew about any of his kids. There partners, or grandkids. My Bro in law when talking about him. FIL says “ he is a knobhead” Then said to me, “ tell them why he is a knobhead”. I explained to him that BIL married his daughter, they have two fantastic kids, he served his country, FIL and BIL March at the front of Remembrance Day parade. “ he is still a knobhead”.
Its MiL birthday next Tuesday. So we are out for a pub meal on Monday. It will be interesting to say the least.
Bottom line. Last three months he has fell off a cliff. Both physically and mentally.

 

[Robster59]

Proper feel your pain. Went around to in laws after a little walk on Monday. I received a phone call from a pal who ended up in hospital during his 50th birthday party. Anyway I went into the kitchen to take the call. When I came out Missis T was showing FIL A memory photo album we bought him 2 Christmas ago. I sat down and he Said “ yes but how long have you being seeing him/ me. Missis T said “ 41 years ago”. ” well it would of been nice if you had told me”. We went through the family. He never knew about any of his kids. There partners, or grandkids. My Bro in law when talking about him. FIL says “ he is a knobhead” Then said to me, “ tell them why he is a knobhead”. I explained to him that BIL married his daughter, they have two fantastic kids, he served his country, FIL and BIL March at the front of Remembrance Day parade. “ he is still a knobhead”.
Its MiL birthday next Tuesday. So we are out for a pub meal on Monday. It will be interesting to say the least.
Bottom line. Last three months he has fell off a cliff. Both physically and mentally.

Sorry to hear that. His sounds like a rapid decline case. That happened to a friend of my Mum's years ago. I imagine a proper diagnosis will give you a better idea, but it sounds like you really need some solid support. Keep in regular contact with his Doctor and Social Care/Services. It's very easy for them to let you get on with it as they are happy for the family to do all the work, but sometimes that's not enough. And make a pest of yourself. My missus had to do it for her Dad with a particularly stroppy Social Worker and finished up reporting him. She got an apology, and we never saw him again, but I'm going through the same thing right now with my Mum's social care as basically they tried to just say all was fine and carry on as you are. And get everything in writing.

 

[Robster59]

Best wishes and hopefully they’ll sort your mam out.
You’ve been through a torrid time as a family, great you are offloading on here, but make sure you chat to your missus as well. Stay safe.

To be honest, having this place as a sounding board has been really helpful. It's certainly helped me to get a few things off my chest. The missus is one who like to keep her emotions in, so trying to talk to her about it is difficult at times.

 

[Tashyboy]

Sorry to hear that. His sounds like a rapid decline case. That happened to a friend of my Mum's years ago. I imagine a proper diagnosis will give you a better idea, but it sounds like you really need some solid support. Keep in regular contact with his Doctor and Social Care/Services. It's very easy for them to let you get on with it as they are happy for the family to do all the work, but sometimes that's not enough. And make a pest of yourself. My missus had to do it for her Dad with a particularly stroppy Social Worker and finished up reporting him. She got an apology, and we never saw him again, but I'm going through the same thing right now with my Mum's social care as basically they tried to just say all was fine and carry on as you are. And get everything in writing.

Missis T reckons that her mother wants Missis T to make the decision that he needs a care package/ go into a home. Missis T said it ain’t gonna happen. Part of the problem is MIL has had FaceTime consultations with social care and said “ all is fine” then the day after she says “ I cannot cope anymore“. When we went for a walk on Monday, Missis T told her mum and she said “ oh we could do to go for a walk “ ?. The simple answer is put your bloody coat on then. They just sit at home and vegetate, and have done for years. Monday, Missis T got 10 phone calls from her dad. On some of the calls you can hear the telly on loud in the back ground. Me and Missis T were laughing After one call. We had turned the sound off on our telly so we could listen to FIL. He shouted at MIL to “ turn the bloody telly down” as he could not hear Missis T. It was the weather report. We watched it on our telly and heard it on there’s. The point is, as long as she has the telly on and the tv times at the side of her she is happy.

Edit to say, one thing I have seen mentioned on here a few times is people have said with hindsight they wish they had put there loved ones into a care home earlier. I honestly think we are now at that stage where he should be in a home. Others think not. Me and Missis T have said during our discussions that we think it could well be that he gets violent and has hold of or hits MIL ( again). He has done it before but said “he hit someone but it was not his wife” ( he never recognised who he hit). Missis T gave him a bollocking saying you should not hit any woman whether you recognise them or not. Only time will tell.

 

[Deleted member 16999]

To be honest, having this place as a sounding board has been really helpful. It's certainly helped me to get a few things off my chest. The missus is one who like to keep her emotions in, so trying to talk to her about it is difficult at times.

Sometimes it’s the ones we love the most we unintentionally hurt the most when trying to protect them. Not easy for any of you, but just being there sometimes is enough.

 

[HomerJSimpson]

Well.................
2 days after the FiL passed away, I got a call from my brother. My mum (98) who still lives at home, had a fall on the 4th. To give some background, my brother is her main carer, and she has an NHS carer come around once a day plus meals on wheels. Only a week before, I had seen my Mum as I was driving down to see my kids and spoke to my brother. He's 70, has a wife, daughter and granddaughter with learning needs, and it looks like it is really stressing him. I spoke to him separately and said he really needs more help, but he basically stonewalled me and said he's always done it this way, and isn't going to change now. I got in contact with social services and spoke to them about my concerns, and I was in this process when I got the call from my brother. Thankfully she had an emergency button which she pushed and help came around. They called my brother, who lives about a mile away, who came around. She had to wait for an ambulance, which then took her to the local hospital. She was then in A&E for a number of hours in a queue in a corridor before she could be seen and then was taken to a ward. Once on the ward, I rang to see how she was. The nurse on the ward said that she had been diagnosed with Early Onset Dementia, which came as a surprise to me. He also said she seemed to be shouting a lot (she is deaf so talks loudly) and was talking a lot (that's my Mum's default position!). Surprised at this, I called my brother, who also said he knew nothing about this. The following day I spoke to the main nurse on the ward who advised that it seemed the information I got the previous night was a bit overstated. On her arrival at the hospital, they had done a CT Scan because she had a fall, and an examination of the brain showed indications of Early Onset, but they can't officially confirm until they do the full dementia test. However, it didn't surprise me as we had seen the way my FiL got as he started on the dementia path. She is now struggling to walk and is having to go through physio before she can be returned home. We then got a call from the hospital yesterday to say that my Mum had contracted Covid. She is not showing symptoms as yet, but it is obviously a concern.
When she does return home she will have to have her number of carer visits upped to 4 a day so that is a battle I am having with Care and Social Services at the moment.
Still, we have experience of doing this with the FiL.

So sorry to hear all of your woes. Glad you are getting it out on here but if you ever want to sound off via DM I'm happy to listen. Hope you turn a corner soon and can move forward and get the care needed

 

[oxymoron]

Missis T reckons that her mother wants Missis T to make the decision that he needs a care package/ go into a home. Missis T said it ain’t gonna happen. Part of the problem is MIL has had FaceTime consultations with social care and said “ all is fine” then the day after she says “ I cannot cope anymore“. When we went for a walk on Monday, Missis T told her mum and she said “ oh we could do to go for a walk “ ?. The simple answer is put your bloody coat on then. They just sit at home and vegetate, and have done for years. Monday, Missis T got 10 phone calls from her dad. On some of the calls you can hear the telly on loud in the back ground. Me and Missis T were laughing After one call. We had turned the sound off on our telly so we could listen to FIL. He shouted at MIL to “ turn the bloody telly down” as he could not hear Missis T. It was the weather report. We watched it on our telly and heard it on there’s. The point is, as long as she has the telly on and the tv times at the side of her she is happy.

Edit to say, one thing I have seen mentioned on here a few times is people have said with hindsight they wish they had put there loved ones into a care home earlier. I honestly think we are now at that stage where he should be in a home. Others think not. Me and Missis T have said during our discussions that we think it could well be that he gets violent and has hold of or hits MIL ( again). He has done it before but said “he hit someone but it was not his wife” ( he never recognised who he hit). Missis T gave him a bollocking saying you should not hit any woman whether you recognise them or not. Only time will tell.

Tashy, with reference to the bit in bold , my brother and i also thought this especially when in one of his more lucid moments my dad turned to us and said "i should have come in to the care home ages ago ".
It is a low point when the decision is made but it does get better from there onwards as long as all the family are with you , my mates family were at loggerheads as his sister disagreed vehemently
but she would not do any of the day to day care just expected him and his wife to do it all .
Sad reading all these post's, just makes all the good memories seem more important when all you see is the bad side of the terrible condition .

Good luck going forward

 

[SwingsitlikeHogan]

A different background but very similar issues to those being described and struggled with in the context of dementia in this discussion.

My 91yr old MiL is (or has been) pin-sharp but is just starting to struggle to manage life and now rarely goes out. She has my 64yr old BiL at home, now diagnosed with multiple myeloma (incurable form of blood cancer) and who quite possibly may not be able to live independently and so to move out, almost certainly not for as many months as we can look ahead as his immune system is severely compromised. Full diagnosis and prognosis not yet given, hopefully we’ll all know more within two weeks.

We are really struggling to get my MiL to accept that she needs to consider what form of home support beyond her cleaner that she needs, support that is not us. And at same time we need to understand the support that my BiL might be able to give his mum, and also what support he himself needs in addition to that of my MiL. And looking ahead a few years can that all be done in MiLs house as it is configured, or indeed can it be done in the house at all.

At the moment as there are just so many unknowns there is a huge reluctance to engage in these difficult discussions with us. Difficult times and so I very much empathise with the difficult and often very painful challenges others are facing.

 

[oxymoron]

A different background but very similar issues to those being described and struggled with in the context of dementia in this discussion.

My 91yr old MiL is (or has been) pin-sharp but is just starting to struggle to manage life and now rarely goes out. She has my 64yr old BiL at home, now diagnosed with multiple myeloma (incurable form of blood cancer) and who quite possibly may not be able to live independently and so to move out, almost certainly not for as many months as we can look ahead as his immune system is severely compromised. Full diagnosis and prognosis not yet given, hopefully we’ll all know more within two weeks.

We are really struggling to get my MiL to accept that she needs to consider what form of home support beyond her cleaner that she needs, support that is not us. And at same time we need to understand the support that my BiL might be able to give his mum, and also what support he himself needs in addition to that of my MiL. And looking ahead a few years can that all be done in MiLs house as it is configured, or indeed can it be done in the house at all.

At the moment as there are just so many unknowns there is a huge reluctance to engage in these difficult discussions with us. Difficult times and so I very much empathise with the difficult and often very painful challenges others are facing.

SILH I sympathize but the earlier you do have the discussions the easier it is in the long run.
Best of luck going forward .

 

[Robster59]

On a slightly lighter note. If you are caring for someone with dementia on a daily basis, be really careful how you speak to some of your senior friends, as it was frighteningly easy to drop into "dementia talk" with them. Thankfully, I stopped myself just in time.

 

[Tashyboy]

On a slightly lighter note. If you are caring for someone with dementia on a daily basis, be really careful how you speak to some of your senior friends, as it was frighteningly easy to drop into "dementia talk" with them. Thankfully, I stopped myself just in time.

Just been out for a meal with MIL, it’s her birthday tomorrow. I paid for meal and as I was at the till apparently FIL said “ am glad I came out but it’s a dump in here “. ??
Sometimes you have to smile.

 

[RichA]

Just been out for a meal with MIL, it’s her birthday tomorrow. I paid for meal and as I was at the till apparently FIL said “ am glad I came out but it’s a dump in here “. ??
Sometimes you have to smile.

Stag & Pheasant or Widow Frost?
Reminds me of the last few years with mum. No good deed ever went uninsulted

 

[Tashyboy]

Stag & Pheasant or Widow Frost?
Reminds me of the last few years with mum. No good deed ever went uninsulted

?
Foxglove, not bad for a pub meal to be hones. Am sure the grandkids swimming lesson be as equally entertaining.

 

[Robster59]

Just as a bit of closure. It was the Father in Law's funeral today. The missus was very stressed going into today. Despite the fact they clashed often, she wanted to do right by him. It was a humanist service, carried out by someone he knew at his club. It was carried out as a celebration of his life, and a number of those attending said the eulogy really made them know more about what he did in his life. And he did a lot.
After the funeral, you could see it was like a weight had lifted off Mrs Robsters shoulders. We can now move on, knowing we did what we could for him, and that he's now at peace.

 

[RichA]

Best wishes as you carry on. Good for Mrs Robster and you to know you did the right things. ?

 

[Tashyboy]

Just as a bit of closure. It was the Father in Law's funeral today. The missus was very stressed going into today. Despite the fact they clashed often, she wanted to do right by him. It was a humanist service, carried out by someone he knew at his club. It was carried out as a celebration of his life, and a number of those attending said the eulogy really made them know more about what he did in his life. And he did a lot.
After the funeral, you could see it was like a weight had lifted off Mrs Robsters shoulders. We can now move on, knowing we did what we could for him, and that he's now at peace.

I hope you and Missis Robster start getting your lives back sooner rather than later.

Me and Missis T. Well last week Missis T and her sister invoked Power of attorney. He has got that bad with money. It’s the norm to walk around with £600 in his wallet. Tomorrow me and Missis T are attending a meeting with a social worker and in laws. That will be very interesting. Today I spent a couple of hours with a lovely woman in Newark who did a memory test/ Assesment on my dad. How do you keep a straight face when he says today is Thursday and it’s 1982.?. That aside it did seem to go well. Watch this space re his next assessment and diagnosis in March. During the assessment, me mum rang to say she was ready for picking up from the hospital 20 miles away At 5 pm. In between that we picked the kids up from school. And young Bradley Tash has been a grade one tit today. On a positive I bought Missis T some flowers. We sat down for dinner at 7.45pm.

 

[Robster59]

I hope you and Missis Robster start getting your lives back sooner rather than later.

Me and Missis T. Well last week Missis T and her sister invoked Power of attorney. He has got that bad with money. It’s the norm to walk around with £600 in his wallet. Tomorrow me and Missis T are attending a meeting with a social worker and in laws. That will be very interesting. Today I spent a couple of hours with a lovely woman in Newark who did a memory test/ Assesment on my dad. How do you keep a straight face when he says today is Thursday and it’s 1982.?. That aside it did seem to go well. Watch this space re his next assessment and diagnosis in March. During the assessment, me mum rang to say she was ready for picking up from the hospital 20 miles away At 5 pm. In between that we picked the kids up from school. And young Bradley Tash has been a grade one tit today. On a positive I bought Missis T some flowers. We sat down for dinner at 7.45pm.

Good luck going forward Tash. I remember sitting through a similar test with my FiL. The test just really highlights how far the illness had gone. However, it is also a good step to getting the help he really needs. The main thing is for you and Mrs Tash to keep supporting each other. And try not to take it all on yourself. Seek help and guidance from where you can, and remember, the right decision is not always the easy one.

 

[Tashyboy]

Good luck going forward Tash. I remember sitting through a similar test with my FiL. The test just really highlights how far the illness had gone. However, it is also a good step to getting the help he really needs. The main thing is for you and Mrs Tash to keep supporting each other. And try not to take it all on yourself. Seek help and guidance from where you can, and remember, the right decision is not always the easy one.

Me and Missis T had a good natter earlier, I was really impressed with the assessment. It’s a different place to where the FIL had his. What was also different was that most of FIL tests were through face time. It seems something is lost doing it that way.

 

[Piece]

SILH I sympathize but the earlier you do have the discussions the easier it is in the long run.
Best of luck going forward .

Without doubt these discussions must be held earlier rather than later. I'm pleased I was the one in our family to be the one with the hand up, otherwise we certainly would have been, as a family, in a far worse place. It enabled us to make plans, warm-up the authorities, rather than continual fire-fighting and running around like headless chickens, more prone to poor decision-making.

Good luckl!

 

[Robster59]

I've just had a call from my brother. As I have previously said, my mother had a fall on 4th January and was in hospital to 7th February. Care package in place, 4 care visits a day, a bed and commode in her downstairs room. I had a WhatsApp call with my mum last Tuesday, and she struggled to recognise me.
Fast-forward to today. I've just had a call from my brother. My Mum's dementia has gone worse over the last few days. She is really getting bad, thinking phone calls are being made and is calling people continuously. I've told him to take the phone off her as she is deaf, so she'll shout down the phone but can't hear anyone.
Well, the care workers came around today and could see my brother was really stressed, and they told him to go home and let the Care Workers do the job, which he did.
But I think we now really need to look at full-time care for my Mum. I rang his Social Care worker. I think she was a bit unsure about who I was and what I was going to say, but I had a good chat with her, explained what we've been through and that we understand all the differences. At the end, she was fine and said she'd keep me updated. My brother says he will, but I still think he likes to keep a bit of control, so I like to go straight to the people who are making the decisions.
Here we go again.......