D
Deleted member 16999
Guest
Cheers, I do understand what you’re saying, it has been a bit easier for me to accept than the wife as it’s her mam.
Dementia Awareness
- Thread starter Lord Tyrion
- Start date
Tashyboy
Please don’t ask to see my tatts 👍
Long post, cut short.
Just under 4 years ago the m-in-law was given the devastating news that her breast cancer from 13yrs previous had returned as Metastatic breast cancer and spread to her bones.
We took the decision to move her in to our home and look after her, it was the right thing to do for us, but understandibly isn’t for everyone for various reasons.
It’s been dificult at times, we basically put our life on hold to concentrate on her, unfortunately due to spreading to her bones it is her mobility that suffered the most, but still we’ve had a lot of smiles and laughs along the way.
Jan this year she needed radiatiin on her spine when the cancer literally took her legs, but she fought that and got back to walking with crutches, sadly then the virus hit and apart from a hospital appt in june she hadn’t been out the house, added to this my wife is disabled and son autistic it’s been a bumpy road.
The three of us keeping her company basically doing 8hr shifts, you can guess who got nights
Bonus for me in the summer was that with the light nights I got to the golf course 4-6 times a week always after 4 o’clock, but realising how lucky I was to get that break.
Sadly they stopped treatment in the summer and gave her 3-6 months, still the laughs continued and mobility descreased severly, but we started to noticed a few mental issues, very forgetful at the start then other issues.
It all came to ahead last thursday when she needed a doctor, they thought she had an infection, but nothing changed, between friday and wednesday morning I had no more than a total of 10hrs kip, she would sleep for no more than an hour and wake up needing the toilet, sometimes it was no more than 5 minutes between trips to the toilet, sadly she wasn’t actually going, but believed she had, she’d eat a meal then ask when she was having dinner, she insisted she could walk and fell twice on monday, thankfully both times I was there to catch her.
Yesterday she told she had heart pains and needed an ambulance, they turned up to her saying it was ok and the pain was now in her knee.
Throughout the whole period we’ve been superbly supported by both MacMillan Nurses and local District Nurses and they in the bsckground were trying to secure a bed in the local hospice for both care for her and respite care for us.
As the paramedics were there examining her we got the call to say they had a bed for her at the hospice, such a relief, the last thing we wanted was her being taken to hospital at the moment.
10hrs at the hospice yesterday, while they got her settled, she was very confused and agitated, back with her today to accompany her to the hospital for a MRI on her spine and brain.
She was a bit brighter today and also had us laughing, she is also getting very paranoid, she told us on our return to the hospice today to be careful what you say to the Staff as they are trying to find out our names and where we live, when asked why, she said it was because they wanted to discharge a patient to our house!!
Watching the loss of mobility was hard enough, but that was gradual, to see the brain decline almost in just weeks/days is horrifying!
Throughout all this the MacMillan Nurses, District Nurses and now Hospice Staff have been incredible, the care and attention she has and is receiving is beyond words, even the staff today at the X-Ray unit were she had her MRI, unreal.
We have no idea how long she has left, the Wife is racked with guilt that we can no longer care for her man, even though she knows it’s the right decision, but I just hope us and everyone else out there remember our incredible Nurses, Doctors and support staff at all levels in the NHS and Health Care System once we best this virus, they were there before it came along and they’ll be there when we’ve beaten it.
It’ll be our turn to look after them and make them feel safe. x
An uplifting and yet emotional story Paul. Always said folk have to talk, Am sure Missis P will look back on these days and say we did more than what we could and will also look back on the fun times. Thanks for sharing and look after yourselves. Tash.
D
Deleted member 16999
Guest
Cheers my man, look after yourselves.
Long post, cut short.
Just under 4 years ago the m-in-law was given the devastating news that her breast cancer from 13yrs previous had returned as Metastatic breast cancer and spread to her bones.
We took the decision to move her in to our home and look after her, it was the right thing to do for us, but understandibly isn’t for everyone for various reasons.
It’s been dificult at times, we basically put our life on hold to concentrate on her, unfortunately due to spreading to her bones it is her mobility that suffered the most, but still we’ve had a lot of smiles and laughs along the way.
Jan this year she needed radiatiin on her spine when the cancer literally took her legs, but she fought that and got back to walking with crutches, sadly then the virus hit and apart from a hospital appt in june she hadn’t been out the house, added to this my wife is disabled and son autistic it’s been a bumpy road.
The three of us keeping her company basically doing 8hr shifts, you can guess who got nights
Bonus for me in the summer was that with the light nights I got to the golf course 4-6 times a week always after 4 o’clock, but realising how lucky I was to get that break.
Sadly they stopped treatment in the summer and gave her 3-6 months, still the laughs continued and mobility descreased severly, but we started to noticed a few mental issues, very forgetful at the start then other issues.
It all came to ahead last thursday when she needed a doctor, they thought she had an infection, but nothing changed, between friday and wednesday morning I had no more than a total of 10hrs kip, she would sleep for no more than an hour and wake up needing the toilet, sometimes it was no more than 5 minutes between trips to the toilet, sadly she wasn’t actually going, but believed she had, she’d eat a meal then ask when she was having dinner, she insisted she could walk and fell twice on monday, thankfully both times I was there to catch her.
Yesterday she told she had heart pains and needed an ambulance, they turned up to her saying it was ok and the pain was now in her knee.
Throughout the whole period we’ve been superbly supported by both MacMillan Nurses and local District Nurses and they in the bsckground were trying to secure a bed in the local hospice for both care for her and respite care for us.
As the paramedics were there examining her we got the call to say they had a bed for her at the hospice, such a relief, the last thing we wanted was her being taken to hospital at the moment.
10hrs at the hospice yesterday, while they got her settled, she was very confused and agitated, back with her today to accompany her to the hospital for a MRI on her spine and brain.
She was a bit brighter today and also had us laughing, she is also getting very paranoid, she told us on our return to the hospice today to be careful what you say to the Staff as they are trying to find out our names and where we live, when asked why, she said it was because they wanted to discharge a patient to our house!!
Watching the loss of mobility was hard enough, but that was gradual, to see the brain decline almost in just weeks/days is horrifying!
Throughout all this the MacMillan Nurses, District Nurses and now Hospice Staff have been incredible, the care and attention she has and is receiving is beyond words, even the staff today at the X-Ray unit were she had her MRI, unreal.
We have no idea how long she has left, the Wife is racked with guilt that we can no longer care for her man, even though she knows it’s the right decision, but I just hope us and everyone else out there remember our incredible Nurses, Doctors and support staff at all levels in the NHS and Health Care System once we best this virus, they were there before it came along and they’ll be there when we’ve beaten it.
It’ll be our turn to look after them and make them feel safe. x
And an excellent shout out to the staff. Those that work at the sharp end will have seen staff crying in the brew room, of doing extra hours at a bedside and grabbing a mouthful of sandwich long after lunchtime, and going straight back out onto the unit.
As I said last night Paul, you've put in a cracking shift but its now time for fulltime, professional care. I don't doubt for one minute you and Donna will be up to see her as often as you can, and that in itself is still doing your bit.
Well played buddy.
D
Deleted member 16999
Guest
Cheers Bri and a big thanks for all the help and support you’ve given me despite the horrid time you’re having yourselves.
Robster59
Tour Rookie
By the sound of it you've done everything you can, and possibly even more. You obviously have a close relationship with your Mother in Law and that, of course, will make it harder for you to see such a change. She's been very fortunate that she's had such excellent support from your family and not been left on her own to cope. And of course from the support of all those who provide the support behind the scenes. The nurses, the NHS, the charities.
You can take solace from the fact that at all steps you've done what is best for her. She may not realise that at times in her current mental state.
To be honest, I'm not sure what's worse. Watching someone lose their faculties quickly or slowly. Either way it's hard.
You can take solace from the fact that at all steps you've done what is best for her. She may not realise that at times in her current mental state.
To be honest, I'm not sure what's worse. Watching someone lose their faculties quickly or slowly. Either way it's hard.
D
Deleted member 16999
Guest
Cheers mate, I understand what your saying about someone losing their facilities, it was almost expected as we worried that with it being wide spread bone cancer it would effect her skull/brain, but even with trying to pre-empt it the speed was still shocking, maybe with her being late 70’s it was over a longer period, but early signs we put down to age.
Thanks again for the kind words.
oxymoron
Club Champion
Long post, cut short.
Just under 4 years ago the m-in-law was given the devastating news that her breast cancer from 13yrs previous had returned as Metastatic breast cancer and spread to her bones.
We took the decision to move her in to our home and look after her, it was the right thing to do for us, but understandibly isn’t for everyone for various reasons.
It’s been dificult at times, we basically put our life on hold to concentrate on her, unfortunately due to spreading to her bones it is her mobility that suffered the most, but still we’ve had a lot of smiles and laughs along the way.
Jan this year she needed radiatiin on her spine when the cancer literally took her legs, but she fought that and got back to walking with crutches, sadly then the virus hit and apart from a hospital appt in june she hadn’t been out the house, added to this my wife is disabled and son autistic it’s been a bumpy road.
The three of us keeping her company basically doing 8hr shifts, you can guess who got nights
Bonus for me in the summer was that with the light nights I got to the golf course 4-6 times a week always after 4 o’clock, but realising how lucky I was to get that break.
Sadly they stopped treatment in the summer and gave her 3-6 months, still the laughs continued and mobility descreased severly, but we started to noticed a few mental issues, very forgetful at the start then other issues.
It all came to ahead last thursday when she needed a doctor, they thought she had an infection, but nothing changed, between friday and wednesday morning I had no more than a total of 10hrs kip, she would sleep for no more than an hour and wake up needing the toilet, sometimes it was no more than 5 minutes between trips to the toilet, sadly she wasn’t actually going, but believed she had, she’d eat a meal then ask when she was having dinner, she insisted she could walk and fell twice on monday, thankfully both times I was there to catch her.
Yesterday she told she had heart pains and needed an ambulance, they turned up to her saying it was ok and the pain was now in her knee.
Throughout the whole period we’ve been superbly supported by both MacMillan Nurses and local District Nurses and they in the bsckground were trying to secure a bed in the local hospice for both care for her and respite care for us.
As the paramedics were there examining her we got the call to say they had a bed for her at the hospice, such a relief, the last thing we wanted was her being taken to hospital at the moment.
10hrs at the hospice yesterday, while they got her settled, she was very confused and agitated, back with her today to accompany her to the hospital for a MRI on her spine and brain.
She was a bit brighter today and also had us laughing, she is also getting very paranoid, she told us on our return to the hospice today to be careful what you say to the Staff as they are trying to find out our names and where we live, when asked why, she said it was because they wanted to discharge a patient to our house!!
Watching the loss of mobility was hard enough, but that was gradual, to see the brain decline almost in just weeks/days is horrifying!
Throughout all this the MacMillan Nurses, District Nurses and now Hospice Staff have been incredible, the care and attention she has and is receiving is beyond words, even the staff today at the X-Ray unit were she had her MRI, unreal.
We have no idea how long she has left, the Wife is racked with guilt that we can no longer care for her man, even though she knows it’s the right decision, but I just hope us and everyone else out there remember our incredible Nurses, Doctors and support staff at all levels in the NHS and Health Care System once we best this virus, they were there before it came along and they’ll be there when we’ve beaten it.
It’ll be our turn to look after them and make them feel safe. x
Only my opinion but it looks to me you did above and beyond what could be described as reasonable care , i would go so far as to say you a a family were outstanding so please , please do not feel any guilt .
You did the best thing all the way along as far as i see it and you should be proud of all you have and continue to do for the lady .
It does not seem like it at the moment but the laughs and smiles will stay with you longer than the bad bits.
All the best going forward .
D
Deleted member 16999
Guest
Thank you.
oxymoron
Club Champion
No i think we should all be thanking you , people like you and your family are the invisible heroes in dementia care you save the county bucket loads of both money and care resources and that goes largely unnoticed and ,Thank you.
in my eyes , unrewarded.
We do not care for our loved ones for any financial gain but because we love them and want the best for them and are sometimes left to our own devices and this is a scandal of epic proportions (my view entirely) .
Support is out there but it can and often is difficult to access and this needs to change .
Tashyboy
Please don’t ask to see my tatts 👍
Amen to that Oxy.
clubchamp98
Journeyman Pro
There is help there but you have to ask for it.
When my mum was bad the biggest problem was my DAD.
He wouldn’t let anyone in the house to help and wanted to do it all himself.
It was a nightmare.
But we couldn’t overrule him
That's life for my wife right now. Her dad is the biggest obstacle to helping her mum with alzheimer's. It's incredibly frustrating.
The help that is there has to be dug out, it is not offered freely, in our experience. The system up here at least, is not joined up or good in any way.
clubchamp98
Journeyman Pro
I got a social worker to come to their house.
To be honest she was brilliant ,she bent over backwards to help .
Before she arrived I said to him.” Just say yes to everything she offers to help mum”
You can say you don’t want it later but if you say no you won’t get it at a later date
As soon as she opened her mouth it was “no no no, what does she need that for”
He was a night mare, and social worker said “ he is next of kin so we must take his word”
This needs looking at as older people are making poor decisions ,but they must take his word.
D
Deleted member 16999
Guest
Sadly, imo, this is down to how the different illness’s are recognised, with the m-in-law having a cancer diagnosis and the MacMillan nurses being involved from minute one we have been inundated with support and offers of help, so much so, we have turned down some support that has been offered.
”Our” experience with the mental health illness’s has come at a late stage and in a strange, awkward way, we could possibly count ourselves lucky.
Tashyboy
Please don’t ask to see my tatts 👍
Just an update.
FIL got a letter a couple of day ago from the DVLA, He is to return his licence. It’s gone down like a fart in a space suit. MIL is gutted coz they now cannot get to ASDA. Even though family can take them. She wishes they had never gone to the drs. Even though he is getting worse. Apparently his interpretation of he smashed the driving test was not what the examiner thought. The DVLA have looked at his condition and test results, the medication he is on and said it’s a no no. It’s for the best.
FIL got a letter a couple of day ago from the DVLA, He is to return his licence. It’s gone down like a fart in a space suit. MIL is gutted coz they now cannot get to ASDA. Even though family can take them. She wishes they had never gone to the drs. Even though he is getting worse. Apparently his interpretation of he smashed the driving test was not what the examiner thought. The DVLA have looked at his condition and test results, the medication he is on and said it’s a no no. It’s for the best.
Robster59
Tour Rookie
You did the right thing. Nobody likes to lose their licence. And the fact they know they never get it back makes it worse as that's a personal freedom of mobility they lost. They're safer now as are other road users. When we got the licence took off the father in law, see did it the medical referral way. He didn't like it at the time but he was a danger on the road.
oxymoron
Club Champion
As Robster says you did the right thing however unpalatable it is , you have kept him and other road users safer.
Do you think they think they are imposing on you when you do things like take them shopping and such ? That was what i got
parents thought they were a burden but as i said , they looked after me when i was unable to do things for myself i was just
repaying them for all they did for me in the past , looking back those shopping trips gave us some good laughs and memories
so there is an upside really .
Tashyboy
Please don’t ask to see my tatts 👍
Me and Missis T have been on a bit of a walk this morning, primarily it’s six weeks since she broke her ankle so a bit of exercise and mental stimulation without grandkids.
Anyway we called into see in laws on our amble. Had a social distance half hour in the sunshine. The car or driving was not mentioned once. However other things were. Whilst there Missis T received a txt from her cousin. FILs sister or Missis Ts auntie is in hospital on end of life care. She has Covid. He couldn’t remember who she was, after being prompted a couple of times, he said “ well Ave not spoke to her for 3 years”. It’s more like 20 years. We had a good laugh about certain things which helped MIL. She looks like she has the worlds problems on her shoulders.
Missis T stated what I had said a few months ago, FIL is just not able to keep up with conversation.
I think what is frustrating for Missis T is since his diagnosis it’s like nothing has changed, not bothered about contacting support groups. Not bothered about going for walks, etc etc .
spoke to bro in law yesterday, he mentioned Missis Ts sister was getting a bit tearful yesterday realising what is happening to her father. Initially she and her brother were all for appealing against the driving ban. BIL said “ would you let one of our kids get in the car with him”. Bottom line no. Thankfully it looks like his car driving is now finished
Robster59
Tour Rookie
It is hard when they can't keep up with things. Before he got really bad I used to go for coffee every Saturday morning with FIL and one of his old friends who already had dementia and you got used to him asking the same question every 2 minutes which shocked my FIL a bit. His friend would think he drove to a place only for his missus to tell him he hadn't as she did all the driving. Now the FIL is like that. You get used to having the same conversation several times a day. It's not their fault, they just don't remember.
Your BIL asked exactly the right question. We wouldn't get into the car with the FIL because it was just, frankly, too frightening. A real accident waiting to happen.
