Alzheimer’s and dementia

[snarlz II]

My mam was diagnosed with this a month ago and today wandered out of her house and had a fall. Some lovely people took her to A&E where they treated her cuts and discharged her. Then pandemonium as we couldn’t find her, reported her missing to the police etc but she eventually was found to be still in the hospital. I’m not sure what my point is but we are there for her every day but I don’t think it’s enough and full time care seems to be the only way forward. What an horrendous disease it is to see someone change so much in front of you.

 

[Fred Basset]

My mam was diagnosed with this a month ago and today wandered out of her house and had a fall. Some lovely people took her to A&E where they treated her cuts and discharged her. Then pandemonium as we couldn’t find her, reported her missing to the police etc but she eventually was found to be still in the hospital. I’m not sure what my point is but we are there for her every day but I don’t think it’s enough and full time care seems to be the only way forward. What an horrendous disease it is to see someone change so much in front of you.

It is an awful disease and I hope that your mam is ok.

I have seen the effect that it has had upon my father and how this has robbed my kids of their grandad.

I wish I something better to say mate apart from all the best.

 

[hefty em]

My mams living with it, diagnosed a day after boxing Day last year. Takes a lot of f***ing about with gp then proper doctors to find a medication that suits. My mams had 2 falls and lost her purse/buspass down town, while on her own. Let alone the anxiety, finding reasons not to leave the house, go to things etc.

She doesn't need to see the doc for another 6 months at the minute like, so small mercy's.

Be thankful for every day. Show her it's not the be all and end all. Have a smile on your chops when your with her. However difficult it feels.

 

[r@mside]

It's something that hurts the carers more than the patient.

I'm sure you will do all you can to meet your Mam's care needs but try to not let it consume you. Take any remaining opportunity to create pleasant new memories and accept the fact there are limits to what you can do for her.

 

[Hair Flick]

What’s been said already is great advice.

She will have moments when she’s perfectly lucid and you’d never suspect a thing was out of sorts with her and others when she’s in her own little bubble.

Treasure the time with her while you can and don’t worry if you sometimes just babble away with no response. It’s therapeutic for you as well as for her.

I wish you all the best, just remember if she occasionally flips or appears confused or forgets who you are it’s most certainly not her being nasty, just an effect of what is happening inside her head as the connections slowly switch off in her brain.

Be strong and keep loving her.

All the best.

 

[snarlz II]

What’s been said already is great advice.

She will have moments when she’s perfectly lucid and you’d never suspect a thing was out of sorts with her and others when she’s in her own little bubble.

Treasure the time with her while you can and don’t worry if you sometimes just babble away with no response. It’s therapeutic for you as well as for her.

I wish you all the best, just remember if she occasionally flips or appears confused or forgets who you are it’s most certainly not her being nasty, just an effect of what is happening inside her head as the connections slowly switch off in her brain.

Be strong and keep loving her.

All the best.

It’s apt you mention the connections in her brain as the consultant said the same thing. She can’t recall a conversation I have with her minutes ago but she can remember being in air raid shelters with her mam and dad. She’s not forgotten me yet but I feel that will come and it will devastate me but won’t change anything as I know it’s beyond her control. Thanks for your thoughts mate.

 

[Hair Flick]

It’s apt you mention the connections in her brain as the consultant said the same thing. She can’t recall a conversation I have with her minutes ago but she can remember being in air raid shelters with her mam and dad. She’s not forgotten me yet but I feel that will come and it will devastate me but won’t change anything as I know it’s beyond her control. Thanks for your thoughts mate.

Went through it with my Dad and currently going through it with the Father-in-law.

You’ll have times you want to cry, times you’ll laugh like a drain. Just go with it, even if it means just getting a quiet place for a few minutes.

There are times they just appear so frail and vulnerable, other times they’ll be strong as an ox.

If ever you just want to get it all out of your system or just need a sounding board feel free to PM me or just post on here. When the chips are down this place really comes good.

 

[snarlz II]

Went through it with my Dad and currently going through it with the Father-in-law.

You’ll have times you want to cry, times you’ll laugh like a drain. Just go with it, even if it means just getting a quiet place for a few minutes.

There are times they just appear so frail and vulnerable, other times they’ll be strong as an ox.

If ever you just want to get it all out of your system or just need a sounding board feel free to PM me or just post on here. When the chips are down this place really comes good.

Yes you are right and especially about this place, thanks for the offer I may take you up on that sometime.

 

[Fred Basset]

It’s apt you mention the connections in her brain as the consultant said the same thing. She can’t recall a conversation I have with her minutes ago but she can remember being in air raid shelters with her mam and dad. She’s not forgotten me yet but I feel that will come and it will devastate me but won’t change anything as I know it’s beyond her control. Thanks for your thoughts mate.

It is sometimes a good default mate, bring up a long term memory that can get a conversation going a get your mam talking about memories. Do it with me dad often. It's great when you can start a conversation that gets your loved one talking away.

Flicky is spot on, by the way; we are always here. @Flared Hicks has been for me many a time. He is an absolute gent and friend.

 

[JRisthenewfergie]

I've worked in social care for 25 years, I've experienced every disease and condition there is, and I can honestly say there are none worse than this, for the patient and for the families, it's a nightmare, so my heart goes out to you and your family mate. I'm not working in that particular field at the moment but from what I hear there are a lot of new drugs coming onto the market that could really help, so find yourself a good gp and don't give up hope, you never know what's round the corner.
As for your concern about your mother forgetting who you are, a little thing you could do is put a family tree up in her house, start with a picture of yer mam and dad, then pictures of her kids, then pictures of her grandkids, and put everybody's name beside their picture, it might not sound like much but it really does help.
If there's any specific thing you're worried about, you could pm me or post on here and ill do my best to find you an answer.
All the best pal

 

[Billy Fish]

It’s apt you mention the connections in her brain as the consultant said the same thing. She can’t recall a conversation I have with her minutes ago but she can remember being in air raid shelters with her mam and dad. She’s not forgotten me yet but I feel that will come and it will devastate me but won’t change anything as I know it’s beyond her control. Thanks for your thoughts mate.

If you think of the memories as all being on a bookcase with the most recent being on the top shelf and long term ones being on the bottom shelf. Occasionally at the start, and more frequently as things develop, the bookcase is given a shake, the stuff on the upper shelves get dislodged and fall off, not all of them it’s utterly random but they’re the most likely to go. The lower shelves stay put however and it’s not until much later as the shaking becomes more intense that these get dislodged if ever.

There are no set rules for how this will play out, everyone is different and timescales and effects are different in each case so if you listen to one persons story that’s not necessarily what you can expect with your Mam.

As Flicky has mentioned above we went through this with our Dad and he seemed to go for a number of months on a plateau with little change in his condition then over a very short period would deteriorate before again plateauing out.

The disease is often associated with the memory loss and confusion and certainly this is the most notable symptom in the early stages but it is unfortunately a lot more involved than that. The mentions above of the brain connections is an important one to understand. Essentially the brain is a huge mass of switches which control every element of bodily function and what this twat of a disease does is randomly over time flick those switches off. Occasionally it’ll flick them on again but progressively over time it works it’s way through turning everything off. The memories are the easy to reach ones for it but it starts to find the cognitive ability switches (speech and understanding) but then also starts to pick off the bodily functions and mobility. Again this is random so everyone is different and there’s no set pattern that can be expected.

There is a lot of support out there and as said above this board is amazing at times and be a real help (again I’d be open to PM’s if you want to discuss things offline) At work we had a session with an organisation called “Dementia Friends” https://www.dementiafriends.org.uk/ and they set up discussion groups locally if that type of thing interests you. There’s also a lot of information and support available through the Alzheimer’s society.

I sincerely wish you and your Mam all the best as you go through the journey ahead, it’s not going to be easy but cherish the better times, as Flicky has said there’ll be times where you can’t help but laugh,that’s ok, and inevitably there’ll be times when you’ll sob your heart out or scream to the heavens, that’s ok too.
Use this board as much as you need, keep referring back to this post thread if you want and that way people pick up on new posts through the alerts function.

Support for those offering the direct care to your Mam is the most important thing as whoever has that unenviable task, in my Dads case it was my Mam, is going to become tired, possibly to the point of exhaustion, they’ll be stressed and can feel all sorts of guilt and frustration that they’re not doing enough, they can only do so much and need to ensure their own health is not compromised.

Take care and have a great Christmas with your Ma

 

[gards2]

Another sympathizer here. Mum died of it and so did my uncle and aunt. Mum lasted about three years after diagnosis. She was on Arruset (sp) I was the last born and first forgotten bless her. Spent her final year in a granny-farm paying 3k a month surrounded by strangers and death. All of her children are at high risk and we all said that if we are diagnosed and the treatment is still as it is now i.e. delaying the inevitable. Some of us will be off to Switzerland or wherever to die in peace.

Hopefully you will get some quality time in with your mum OP

 

[Gremlin]

Lost my grandad a couple of years ago in the earlier stages of dementia. Thankfully his health declined before his memory really did so he only ever really got to the point of "no idea who the fuck you are but you seem a decent person so let's have a chat anyway" and was still relatively contented so we missed the absolute worst stages of decline from it. Sounds horrid but I'm bloody glad his physical health took him instead before the worst hit.

 

[Paddy O'Dors]

Sorry to hear your bad news mate.

Looking ahead you might want to start looking at things that will help while your mum still has a degree of lucidity, such as Power of Attorney (not cheap if you go through a solicitors) so you can help with financial/health affairs. Also ring up utility companies etc now and get your name added as a third party authority on accounts so you can discuss them (this costs nowt but what you can do on the accounts is limited). These steps can ease a lot of frustration later on.

 

[becs]

It’s apt you mention the connections in her brain as the consultant said the same thing. She can’t recall a conversation I have with her minutes ago but she can remember being in air raid shelters with her mam and dad. She’s not forgotten me yet but I feel that will come and it will devastate me but won’t change anything as I know it’s beyond her control. Thanks for your thoughts mate.

Sorry to hear what you are going through. Have helped care for two grandparents through it and it's an awful disease. My Grandpa was just as you say. We had family and friends popping in throughout the day as he would forget to eat and wash and basic stuff, but he could still sit and tell you all sorts of tales from his past.

Have you been in touch with social services? It's not as bad as people think it is! They should send someone out to do a care assessment and suggest things that might be of use to her and your family. Also try Alzheimers Society, Age UK and if you are in the area, Sunderland Carers Association. Can highly recommend the latter as they've been fantastic in supporting us with help for my Dad.

Sorry to hear your bad news mate.

Looking ahead you might want to start looking at things that will help while your mum still has a degree of lucidity, such as Power of Attorney (not cheap if you go through a solicitors) so you can help with financial/health affairs. Also ring up utility companies etc now and get your name added as a third party authority on accounts so you can discuss them (this costs nowt but what you can do on the accounts is limited). These steps can ease a lot of frustration later on.

Definitely do this too! We also had the post on redirection as Gran kept paying bills over and over again with cash over the Post Office counter, leaving nothing for her to buy food and stuff with.

 

[OldNewtown]

@snarlz II

Sorry to hear your bad news mate.

Looking ahead you might want to start looking at things that will help while your mum still has a degree of lucidity, such as Power of Attorney (not cheap if you go through a solicitors) so you can help with financial/health affairs. Also ring up utility companies etc now and get your name added as a third party authority on accounts so you can discuss them (this costs nowt but what you can do on the accounts is limited). These steps can ease a lot of frustration later on.

This is good advice, I was lucky with my mam that we had a sympathetic solicitor who accepted that my mam was still in control of her faculties. I have witnessed the problems caused by not having a power of attorney in place and you really don't want to be in that situation.

On a lighter note enjoy your mam and if she wants something that appears a little daft, like an ice cream at 10 o'clock at night, let her have one, the smile on her face will make it all worthwhile.

There will be difficult times ahead but trust me when you see your mam smile it makes one hell of a difference to your day.

Don't be afraid to post to ask for help or just to chat, a problem shared and all that...

Stay strong for your mam

 

[West_Winger]

My mam was diagnosed with this a month ago and today wandered out of her house and had a fall. Some lovely people took her to A&E where they treated her cuts and discharged her. Then pandemonium as we couldn’t find her, reported her missing to the police etc but she eventually was found to be still in the hospital. I’m not sure what my point is but we are there for her every day but I don’t think it’s enough and full time care seems to be the only way forward. What an horrendous disease it is to see someone change so much in front of you.

I’m so sorry to hear this. My wife’s granddad had the disease and it was pretty rough at times.

All I’d say is cherish the times when she’s lucid and just remember it isn’t her it’s the disease when she isn’t.

All the best.

 

[Billy Fish]

Sorry to hear your bad news mate.

Looking ahead you might want to start looking at things that will help while your mum still has a degree of lucidity, such as Power of Attorney (not cheap if you go through a solicitors) so you can help with financial/health affairs. Also ring up utility companies etc now and get your name added as a third party authority on accounts so you can discuss them (this costs nowt but what you can do on the accounts is limited). These steps can ease a lot of frustration later on.

Very good, practical, advice

 

[The soap powder]

sorry to hear the bad news for your mam and your family mate

horrible thing to have to live with but speak to GP and remember there is help out there

cherish the good times and please ask for help when its needed cos there is no shame in it

 

[Hair Flick]

Sorry to hear your bad news mate.

Looking ahead you might want to start looking at things that will help while your mum still has a degree of lucidity, such as Power of Attorney (not cheap if you go through a solicitors) so you can help with financial/health affairs. Also ring up utility companies etc now and get your name added as a third party authority on accounts so you can discuss them (this costs nowt but what you can do on the accounts is limited). These steps can ease a lot of frustration later on.

Good advice there Paddy. I was badgering my wife and her sister to do this for ages but they kept putting it off thinking they’d be viewed badly by distant relatives.

They’ve done it now and it’s made sorting stuff out for him so much easier.

@Billy Fish also brings up a good point about helping those closest to the firing line. If that’s you, make sure you make time for yourself to keep mentally and physically in tip top form.