Dementia Awareness

[Tashyboy]

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.......

Feel it, flippin eck where to start. Re my dad, he had a lady ring today to make an appointment and see him next week. She wants to observe what he can do At home. She asked him what he does when he gets up In the morning. He said “ stretch my arms and yawn”. Missis T had tears rolling down her cheeks and walked out of the room. He has a CT scan tomorrow. My dad don’t seem bad but his score was 70/100 from his memory test. Watch this space re my dad.
But the FIL. Sweet lord he has fell off a cliff. He keeps going for a wander at night. We were at a business launch party Friday night. I had 2 phone calls from a pal in a pub where FIL had walked to. He was worried about FIL. He rang me when he started walking home. missis T rang MIL and she did not seem concerned one bit. I have been googling tracking devices for folk with dementia but I have not got a clue what would be the best device. At the same time I feel Missis T and her sister who have Power of attorney should deal with this problem. Talking of POA, Missis T has sorted out internet banking and FIL has drawn out 5K over the last year. Not got a clue where he has put it. My parents have the earlier POA and we are looking to update it, but it seems me mum who is recovering from a gall bladder removal at the moment cannot be bothered with anything.

 

[RichA]

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.......

Good luck brother. I'm not a doctor, so take anything I say with a kilo of salt, but...
a really rapid decline might point to something other than just the dementia. When old folks get dehydrated, something as simple as a UTI can temporarily make mild dementia into a horror show. It's quickly sorted, when treated.
Has she seen a proper medic or just the carers?
Only speaking from what I witnessed with my mum a few years ago.

 

[Tashyboy]

Good luck brother. I'm not a doctor, so take anything I say with a kilo of salt, but...
a really rapid decline might point to something other than just the dementia. When old folks get dehydrated, something as simple as a UTI can temporarily make mild dementia into a horror show. It's quickly sorted, when treated.
Has she seen a proper medic or just the carers?
Only speaking from what I witnessed with my mum a few years ago.

This all day long, when my dad has his dementia test last month, my dad who has Luekemia amongst other things cannot afford to get an infection. It was emphasised to him that hydration is massively important. It can be sorted by a few glasses of water each day.

 

[Robster59]

Thanks. Mum had Covid whilst in hospital and I've asked them to check these things. We had similar concerns with the FiL and an injection really knocked him back.

 

[Robster59]

I went to see my Mum tonight. God, she's deteriorated. Totally wandered. My brother is totally knocked by how fast the deterioration has been. This is from somebody who would not take any advice and had to do things his way. The sad thing, we tried to warn him when we saw Mum between Christmas and New Year.
He was very defensive when I turned up, thinking I was going to have a go. I wasn't, we never have, but he wouldn't listen to our advice. It always had to be his way. Once I got him to settle down, he was in bits, and it's obviously far too much for him. He's 70 this year, has a wife and daughter with special needs, and he needs to get some relief.
He now agrees a Nursing Home is the best thing for her, and we need to get it moving quickly. I will be speaking to Social Service to put in my two-pennorth and get things moving as quick as we can. As much as for his sanity as hers.

 

[SwingsitlikeHogan]

I went to see my Mum tonight. God, she's deteriorated. Totally wandered. My brother is totally knocked by how fast the deterioration has been. This is from somebody who would not take any advice and had to do things his way. The sad thing, we tried to warn him when we saw Mum between Christmas and New Year.
He was very defensive when I turned up, thinking I was going to have a go. I wasn't, we never have, but he wouldn't listen to our advice. It always had to be his way. Once I got him to settle down, he was in bits, and it's obviously far too much for him. He's 70 this year, has a wife and daughter with special needs, and he needs to get some relief.
He now agrees a Nursing Home is the best thing for her, and we need to get it moving quickly. I will be speaking to Social Service to put in my two-pennorth and get things moving as quick as we can. As much as for his sanity as hers.

My mum’s cognitive function collapsed very quickly after she was diagnosed with a brain tumour…with effect very like dementia. It was very distressing for us, but much more so in fact for her, as she realised what was happening to her. It was almost a relief when her perception of her own condition went. We were very fortunate to have her admitted to Mearnskirk (sadly now shut) as that was on our doorstep which meant I could stay and work at our family home in Broom and visit regularly.

It was a very difficult time, and I think that it’s important to say to your mum everything you must, even the things you might in life have found a bit awkward…like ‘I love you mum’ - though she might not ‘hear’ you she just might, and you really don‘t want to be left wishing you’d just said something to her…when it’s no longer possible.

 

[Robster59]

Well, it's been an eventful week or so. After visiting my Mum, I was straight on to Social Services with an email to update them, explain the situation and ask (again) for a dementia test. Since then.....

• My brother contacted Social Services as well to say that he believes my Mum needs 24 hour care.
• The Social worker went around on Wednesday of last week to review Mum and said that she seemed to still be mentally aware, in her opinion, and that Mum didn't want to go into a home.
• My brother then dithered and said that he just wants Mum to be happy.
• I wrote back to the Social Worker saying that an individuals' opinion was not what I was asking for, but a professional and official test.
• I said I was not happy and that I thought it would only be a matter of time before Mum fell again and would be back in hospital.
• I also expressed concern about the mental and emotional impact it was having on my brother, as he was in tears when I saw him last week. I don't think he's mentally strong enough to keep doing this.
• I said that I was recording all emails as a record in case anything did happen to my Mum.
• I sent this email Wednesday evening. On Thursday, I got a call from my brother saying Mum had fallen again and was back in hospital.
• I spoke to the hospital who said she was on antibiotics for a urinary tract infection, is dehydrated and on a liquid drip, but otherwise OK. However, again, she is struggling to walk.
• I got back on to Social Services and said that now, for the second time, what I said would happen, has happened. I said that not in satisfaction, but disappointment that my concerns had not been addressed.
• I got a call from someone more senior Social workers who was planning to go in to see Mum today (that won't happen as you can't mentally assess in hospital) but will re-assess the situation in more detail once Mum has been diagnosed.

Trying to do this from 200+ miles away is pretty stressful and not helped by the fact that my brother really isn't helping on this. I know he's looking after Mum, but he's now so ingrained into the situation, he can't make a decision that will be the best for Mum.

Still, at least we know what is involved from dealing with the Father-in-Law and the right keywords to use and buttons to press to get Social care moving.

 

[Lord Tyrion]

Well, it's been an eventful week or so. After visiting my Mum, I was straight on to Social Services with an email to update them, explain the situation and ask (again) for a dementia test. Since then.....

• My brother contacted Social Services as well to say that he believes my Mum needs 24 hour care.
• The Social worker went around on Wednesday of last week to review Mum and said that she seemed to still be mentally aware, in her opinion, and that Mum didn't want to go into a home.
• My brother then dithered and said that he just wants Mum to be happy.
• I wrote back to the Social Worker saying that an individuals' opinion was not what I was asking for, but a professional and official test.
• I said I was not happy and that I thought it would only be a matter of time before Mum fell again and would be back in hospital.
• I also expressed concern about the mental and emotional impact it was having on my brother, as he was in tears when I saw him last week. I don't think he's mentally strong enough to keep doing this.
• I said that I was recording all emails as a record in case anything did happen to my Mum.
• I sent this email Wednesday evening. On Thursday, I got a call from my brother saying Mum had fallen again and was back in hospital.
• I spoke to the hospital who said she was on antibiotics for a urinary tract infection, is dehydrated and on a liquid drip, but otherwise OK. However, again, she is struggling to walk.
• I got back on to Social Services and said that now, for the second time, what I said would happen, has happened. I said that not in satisfaction, but disappointment that my concerns had not been addressed.
• I got a call from someone more senior Social workers who was planning to go in to see Mum today (that won't happen as you can't mentally assess in hospital) but will re-assess the situation in more detail once Mum has been diagnosed.

Trying to do this from 200+ miles away is pretty stressful and not helped by the fact that my brother really isn't helping on this. I know he's looking after Mum, but he's now so ingrained into the situation, he can't make a decision that will be the best for Mum.

Still, at least we know what is involved from dealing with the Father-in-Law and the right keywords to use and buttons to press to get Social care moving.

It's crazy, the fight that social services put up when they only see someone briefly, know so little about the situation. You explain and explain but they don't seem to listen. When you get the right person the wheels suddenly turn but until you get that right person...........

As you say, at least you know the system now. Tiring, good luck.

 

[oxymoron]

Well, it's been an eventful week or so. After visiting my Mum, I was straight on to Social Services with an email to update them, explain the situation and ask (again) for a dementia test. Since then.....

• My brother contacted Social Services as well to say that he believes my Mum needs 24 hour care.
• The Social worker went around on Wednesday of last week to review Mum and said that she seemed to still be mentally aware, in her opinion, and that Mum didn't want to go into a home.
• My brother then dithered and said that he just wants Mum to be happy.
• I wrote back to the Social Worker saying that an individuals' opinion was not what I was asking for, but a professional and official test.
• I said I was not happy and that I thought it would only be a matter of time before Mum fell again and would be back in hospital.
• I also expressed concern about the mental and emotional impact it was having on my brother, as he was in tears when I saw him last week. I don't think he's mentally strong enough to keep doing this.
• I said that I was recording all emails as a record in case anything did happen to my Mum.
• I sent this email Wednesday evening. On Thursday, I got a call from my brother saying Mum had fallen again and was back in hospital.
• I spoke to the hospital who said she was on antibiotics for a urinary tract infection, is dehydrated and on a liquid drip, but otherwise OK. However, again, she is struggling to walk.
• I got back on to Social Services and said that now, for the second time, what I said would happen, has happened. I said that not in satisfaction, but disappointment that my concerns had not been addressed.
• I got a call from someone more senior Social workers who was planning to go in to see Mum today (that won't happen as you can't mentally assess in hospital) but will re-assess the situation in more detail once Mum has been diagnosed.

Trying to do this from 200+ miles away is pretty stressful and not helped by the fact that my brother really isn't helping on this. I know he's looking after Mum, but he's now so ingrained into the situation, he can't make a decision that will be the best for Mum.

Still, at least we know what is involved from dealing with the Father-in-Law and the right keywords to use and buttons to press to get Social care moving.

Hope you get a place for her in a good care home , it seems like your brother needs it as much as your mum.
As hard as it comes across and i do not want to appear hard hearted but i think when you are at this stage her happiness is not a consideration as much as her safety and well
being , and indeed to a point yours and your brothers mental and physical health .

I wish you all the best , now my parents have passed through this, i have to say my heart breaks when i read some of the post's on here and find i have to
leave this thread for a while now and again .

 

[Tashyboy]

Just spoke to Missis T about this. Missis T said that ” for her to be discharged home, there needs to be a care package in place”. If there is not it is classed as an “ unsafe discharge”. If you or your brother are not able to give your mother the care she requires then social services will have to take action. Sometimes you have to be cruel to be kind, if one wants the best for your mother, your brother needs to step back. He and you have done all you can.

That said. missis T bought some tracker tags for her Father. There bloody useless as they only work on the phone via Bluetooth and have a range of 75ft. So today MIL called and said “ FIL has been going for a wander and the other day was lost” this has been going on for months but now it is an issue To her. She rang Missis T to say “ have you done anything re a tracker”. Missis T bounced it back and told MIL to ring her Alzheimer’s contact person and ask them re a recommended tracker. Missis mentioned you will have to pay £20-30 per month for the tracker. Her response was “ well we will see then”. She is so frustrating.

 

[Robster59]

Thanks everyone for your comments. If I'm being honest, I'm having two battles. One with Social Services, and the other with my brother, who will not listen to advice and is reluctant to accept any change to the way he does things. He gets annoyed if I try to give him any advice and will not take control of things to do with Mum. He says "Social Services are doing a good job", when patently they aren't given the condition of Mum. I had asked him to up the number of Care visits per day, but he wouldn't as he said Mum didn't want more people in the house, and he could handle it. Well, she got 4 care visits after her fall. But that didn't stop her falling again. When I've been there, Mum is running rings around him, and has him at her Beck and Call. He won't admit to that and just gets all defensive. It's really frustrating.
He's really not up to it now, and I've said so to Social Services. I've had to explain again about a number of my concerns.
You're right in saying it's about Mum's Health & Safety. That's where I am aiming to with Social. They are now starting to see my side of it (I hope), and will look more closely at the whole situation.
I've used the "I'm logging all my emails for future reference" card as that way, they can't deny I made them aware of my concerns.
I'm having to go behind my brother's back on this, but I have to do it for the sake of both of them. I'd rather do that, than get a call one day saying my Mum had been found dead after a fall.

 

[Robster59]

I've just had a call from my brother to say that Social Services have contacted him to confirm that my Mum needs 24/7 care. I'm glad we have finally got to the right decision for Mum. She is still in hospital, and so now they have to locate a suitable nursing home with dementia care for her. This will all have to be paid for by the sale of my parent's house, which we knew would happen. Everybody understands that and agrees to this (although there's not a lot that can be done about it anyway).
Her condition has deteriorated, and she has had another Covid infection. That's three since the New Year (2 x Covid and 1 x UTI), and each one will affect her mental capacity. The main thing is to make sure that the nursing home chosen for Mum is the right one.

 

[RichA]

Good luck.
We got lucky with my mum's nursing home. First instincts were that it was dreadful, but the staff were lovely and attentive and the residents seemed relatively happy and very well cared for.
Some expensive place with rooms that feel like a boutique hotel would have looked better, but she wouldn't have cared and would have probably felt isolated.
Again, good luck. It's hard.

 

[Robster59]

Well, Mum is now in her Care home.
After much chasing, I finally got hold of the Social Care worker for the hospital. They did the assessment and agreed that she now needs 24/7 nursing care. From that, they did move pretty quickly. She started looking for a suitable home, and found one for her in the next local authority. She sorted out all the paperwork, and, whilst Mum still has to contribute, it is just over half the listed rate on their site.
My brother went in to see her today and she seemed fine. I'm hoping to get in to see her the end of this week. First impressions are that the home seems OK but I'll have a good luck when I go down for myself.
I'm not sure how much she will be taking in anyway. I'm not even sure she will know who I am. But as long as she is well cared for, that's all that matters.

 

[Tashyboy]

So yesterday we had a phone call from the memory clinic couldn’t have an appointment because me dad has Covid. Diagnosis, early/moderate Vascular Dementia with alziehmers. So me dad has that and FIL has fell off a cliff with the same diagnosis. Missis T gave me dad a cuddle and said she is proud he took our/ her advice to see the gp as soon as she thought he had signs. Not gonna lie it choked me a bit. It has probably upset her even more that her dad went ballistic when she suggested he should see a dr. Not helped when her mother would not back her up. Is it any consolation that we have trod this path recently re FIL that we know how to go on re help and advice. Not really especially when you know it is a crap journey. Gutted for me dad as like Missis T said “ your dad looked devastated at the diagnosis”. What can you do.
Yesterday afternoon was spent selling FIL caravan, ironically to a guy who’s MiL has just passed away with dementia. At the moment me head ( and Missis Ts) is spinning re what is going on. Walking down the 4th fairway today and the phone rang from the Alzhiemers support workers. Felt a right twazzock telling them I couldn’t talk as am on the course and had PPs waiting. She was lovely and understood. She is ringing tomorrow. Even me time, recharging batteries on the course time is interrupted.

 

[Lord Tyrion]

@Tashyboy blimey, it's not raining on you, it's pouring. There's nothing uplifting I can really say to all that so just keep posting and let it out.

 

[Tashyboy]

@Tashyboy blimey, it's not raining on you, it's pouring. There's nothing uplifting I can really say to all that so just keep posting and let it out.

I know the forum don’t like long posts, but am only scratching the bloody surface.?

 

[Robster59]

As

I know the forum don’t like long posts, but am only scratching the bloody surface.?

I feel for you. There's not much we can add to this but we're here to listen. As someone who has posted War & Peace on this thread in the past, I think the mods will be understanding given the subject matter. I found it very therapeutic to express myself on here.

 

[Lord Tyrion]

I know the forum don’t like long posts, but am only scratching the bloody surface.?

This thread is the exception to that ?

 

[HomerJSimpson]

So yesterday we had a phone call from the memory clinic couldn’t have an appointment because me dad has Covid. Diagnosis, early/moderate Vascular Dementia with alziehmers. So me dad has that and FIL has fell off a cliff with the same diagnosis. Missis T gave me dad a cuddle and said she is proud he took our/ her advice to see the gp as soon as she thought he had signs. Not gonna lie it choked me a bit. It has probably upset her even more that her dad went ballistic when she suggested he should see a dr. Not helped when her mother would not back her up. Is it any consolation that we have trod this path recently re FIL that we know how to go on re help and advice. Not really especially when you know it is a crap journey. Gutted for me dad as like Missis T said “ your dad looked devastated at the diagnosis”. What can you do.
Yesterday afternoon was spent selling FIL caravan, ironically to a guy who’s MiL has just passed away with dementia. At the moment me head ( and Missis Ts) is spinning re what is going on. Walking down the 4th fairway today and the phone rang from the Alzhiemers support workers. Felt a right twazzock telling them I couldn’t talk as am on the course and had PPs waiting. She was lovely and understood. She is ringing tomorrow. Even me time, recharging batteries on the course time is interrupted.

Sorry to hear this pal. Stay strong and make sure you look after yourself and the good lady and take the help for you on offer as well as doing what you can to look after your old man. I lost mine very quickly to cancer (less than 18 months) so know the pain you are feeling. Always feel free to rant on here or via PM.