A week in the life of a PWD and carer

[Bakerst]

MON OH went on walkabout with the dog in the morning, searched for an hour, had to phone Police to help. OH finally turned up, saying a nieghbour ( still don't know who) brought him home (still don't know from where)
TUE Upset all day, wanting to see a sister, who 'never has any time' Grandchildren came for weekly visit at 9.30pm! Stayed until nearly 12 ,much too late for OH ,he was up and down all night.
WED OH very confused and distressed all day, due to tiredness etc, wanted to go out, so took him to local supermarket for quick look around. OH speaks to everyone, especially those with children, he loves children, one woman started screeching at him to stay away from her and her daughter ( I know people are protective but he was only saying hello) I got him away from the situation but he was very distressed. We ended up just leaving.
THU OH was up, dressed and eating toast at 4.30 am , managed to get him back to bed, but has been really confused and upset again. Carer, me, spent another hour on phone to Adult Care asking for the assessment, started at the beginning of March and still not done ?
Carer, worn out..and a bit fed up ?

 

[Lindap]

MON OH went on walkabout with the dog in the morning, searched for an hour, had to phone Police to help. OH finally turned up, saying a nieghbour ( still don't know who) brought him home (still don't know from where)
TUE Upset all day, wanting to see a sister, who 'never has any time' Grandchildren came for weekly visit at 9.30pm! Stayed until nearly 12 ,much too late for OH ,he was up and down all night.
WED OH very confused and distressed all day, due to tiredness etc, wanted to go out, so took him to local supermarket for quick look around. OH speaks to everyone, especially those with children, he loves children, one woman started screeching at him to stay away from her and her daughter ( I know people are protective but he was only saying hello) I got him away from the situation but he was very distressed. We ended up just leaving.
THU OH was up, dressed and eating toast at 4.30 am , managed to get him back to bed, but has been really confused and upset again. Carer, me, spent another hour on phone to Adult Care asking for the assessment, started at the beginning of March and still not done ?
Carer, worn out..and a bit fed up ?

thinkng about OH getting lost . Do you have an Iphone or similar . I use the apple airtags and have one on OH all the time. When he wanders at least I know where to look for him. I feel for you I’m currently up warming milk to try and calm OH down. He marching around the house right now. Sorry you are fed up I feel your pain. Hang on on there.

 

[Libbybookworm]

Your 'week in the life' resonates with me @Bakerst ? We've been going through this stage for a long time, but over the last few weeks my OH has given up going out for walks and follows me around constantly when he's not snoring. I also recognise the crack of dawn breakfasts, followed by demands for lunch at 9am and dinner at mid afternoon. My son tells me I'm a saint; he doesn't hear the sotto voce expletives.

 

[Grannie G]

Your post reminded me of so many parallels @Bakerst

The Walkabouts, the wanting to see his wife, mother, uncle, speaking to children, especially toddlers, etc etc etc.

If you have any energy left, keep contacting Adult Social Care to remind them you are still there and still struggling. If you don`t they will think you are OK and concentrate on those who they think are not managing as well as you are.

 

[Bakerst]

Your 'week in the life' resonates with me @Bakerst ? We've been going through this stage for a long time, but over the last few weeks my OH has given up going out for walks and follows me around constantly when he's not snoring. I also recognise the crack of dawn breakfasts, followed by demands for lunch at 9am and dinner at mid afternoon. My son tells me I'm a saint; he doesn't hear the sotto voce expletives.

?I'm afraid my compassionate communication went out of the window last night..20 times in 10 minutes asking to take dog out..we had only just taken him..then he got up at 12.00 in underwear trying to take him out..even the dog ran for cover ????

 

[Bakerst]

thinkng about OH getting lost . Do you have an Iphone or similar . I use the apple airtags and have one on OH all the time. When he wanders at least I know where to look for him. I feel for you I’m currently up warming milk to try and calm OH down. He marching around the house right now. Sorry you are fed up I feel your pain. Hang on on there.

Thanks, we have tried, tags, trackers etc but I have to hide them in his coat pocket...then he goes out without his coat ?..or he heard one bleeping..and threw it away ?‍♀️
The police informed me of the Herbert Protocol we have in our area, so in the future I can dial 999 and they have all his info to hand..more forms to fill in, but needs must...?

 

[Bakerst]

Your post reminded me of so many parallels @Bakerst

The Walkabouts, the wanting to see his wife, mother, uncle, speaking to children, especially toddlers, etc etc etc.

If you have any energy left, keep contacting Adult Social Care to remind them you are still there and still struggling. If you don`t they will think you are OK and concentrate on those who they think are not managing as well as you are.

Thanks Grannie G, I think it was the incident in the supermarket that nearly sent me to the edge..I just wanted to cry. I have started to order stuff online so we don't have to go as much, but OH loves going shopping, I have tried evenings when there are no youngsters about, but OH is just too tired to go. I take him while the kids are in school, but there are still youngsters in shops. I'm dreading the school holidays when there will always be young people around. Tbh it's a nightmare trying to watch OH and shop and avoid people with children..it's so emotionally draining

 

[Libbybookworm]

Thanks Grannie G, I think it was the incident in the supermarket that nearly sent me to the edge..I just wanted to cry. I have started to order stuff online so we don't have to go as much, but OH loves going shopping, I have tried evenings when there are no youngsters about, but OH is just too tired to go. I take him while the kids are in school, but there are still youngsters in shops. I'm dreading the school holidays when there will always be young people around. Tbh it's a nightmare trying to watch OH and shop and avoid people with children..it's so emotionally draining

I gave up supermarket shopping just before the first lockdown. The final straw was when I was unloading the shopping onto the conveyor belt and he was putting it back in the trolley. It ended up with him shouting at me and the cashier while grabbing things out of my hands.

 

[Bakerst]

I gave up supermarket shopping just before the first lockdown. The final straw was when I was unloading the shopping onto the conveyor belt and he was putting it back in the trolley. It ended up with him shouting at me and the cashier while grabbing things out of my hands.

Looks like I'm going to have to be the same, already have to do it for cards, clothes etc, just another avenue closed I suppose.

 

[Grannie G]

The last time I went with my husband to the supermarket I gave him a list for all fruit and veg while I shopped for the rest

I thought shopping for fruit and veg would keep him in the same area with everything to hand and easy to spot.

During my shop I found him wandering around in different areas with the list in his hand looking bewildered. It was heartbreaking.

This was the person who did all the family shopping on his day off while I was working He had it down to a ‘t’. He didn’t like shopping with me. He was used to shopping by himself and thought I was treating him like a child.

It was the last personal shop before I shopped on line.

 

[jennifer1967]

my husband used to do all the shopping and knew where everything was and hated me going as i slowed him up. as he was shielding, i did it until i couldnt because of the pain. i do all the shopping online now and its so much easier just to have it delivered and ive just got to put it away. he will still go to the shop for bits i run out of which isnt much, but he cant cope as well. the shop seems bigger and he cant find things. he also cant judge between similar things and doesnt read the packet so we do have odd things coming home. he also buys things that i already have because hes forgotten. he would never manage a weekly shop now.

 

[Lindap]

thinkng about OH getting lost . Do you have an Iphone or similar . I use the apple airtags and have one on OH all the time. When he wanders at least I know where to look for him. I feel for you I’m currently up warming milk to try and calm OH down. He marching around the house right now. Sorry you are fed up I feel your pain. Hang on on there.

Your 'week in the life' resonates with me @Bakerst ? We've been going through this stage for a long time, but over the last few weeks my OH has given up going out for walks and follows me around constantly when he's not snoring. I also recognise the crack of dawn breakfasts, followed by demands for lunch at 9am and dinner at mid afternoon. My son tells me I'm a saint; he doesn't hear the sotto voce expletives.

Thanks, we have tried, tags, trackers etc but I have to hide them in his coat pocket...then he goes out without his coat ?..or he heard one bleeping..and threw it away ?‍♀️
The police informed me of the Herbert Protocol we have in our area, so in the future I can dial 999 and they have all his info to hand..more forms to fill in, but needs must...?

Is that protocol in every area I’d be interested in that. Strangely and luckily my OH wasn’t me to put the tag on his trousers every time we go out so I’m blessed in that respect.

 

[Lindap]

Your 'week in the life' resonates with me @Bakerst ? We've been going through this stage for a long time, but over the last few weeks my OH has given up going out for walks and follows me around constantly when he's not snoring. I also recognise the crack of dawn breakfasts, followed by demands for lunch at 9am and dinner at mid afternoon. My son tells me I'm a saint; he doesn't hear the sotto voce expletives.

I understand totally my OH is so close to me all day I can’t even sit on the loo without him being there or banging the door all the time. The eating well I can’t keep anything in the fridge I have to shop everyday this is compounded by the fact he used to do all the cooking and so tries to help which is a complete nightmare. I’m so relieved to read you post as I thought I was alone in handling a situation like this. I’m interested in how long is “a long time” as I’m not sure I can do this for a very long time. Did your OH just suddenly give up going for walks that is my worst fear as outside mine is just fine talking nonsense of course but fine but indoors he’s like a caged animal. You should hear my use of the F word in my head and out load too.

 

[doingok]

I could have written a little of each and ever post here . I have to say I did laugh at the dog story though..and the chats through the bathroom door?

I’ve only recently had support from a care company for my husband where I can leave him for a few hours and do my own thing.except it’s been so long I don’t know what to do so I’m not making the best of these few hours. That will need to change I know.

Also I’d like to know how “long is a long time “ too.

Some days my husband just wants to rest/sleep inbetweeen asking me the same repetitive questions and I think this is ok then next day it’s all hell with him looking for car keys demanding to drive the car or trying to pack his stuff. I take him walking,a drive, play music give him food but on those days it’s tough going…so when do we carers know the time is right now for full time residential care?

 

[canary]

when do we carers know the time is right now for full time residential care?

If you are asking yourself that question, then the time is now.

 

[Bakerst]

Is that protocol in every area I’d be interested in that. Strangely and luckily my OH wasn’t me to put the tag on his trousers every time we go out so I’m blessed in that respect.

We are in the Greater Manchester area, and the Herbert Protocol is a collaboration with GMP Dementia United, Dementia Friends and the NHS. I'm pretty sure they said it is going nationwide ( was a bit stressed at the time ?) but I'm sure you could check with your local police to see if it is in your area. The small thing that made me feel better, was that it tells you to phone 999 and you don't have to wait a certain length of time before you can report a PWD missing..it is acted on at once

 

[Shedrech]

Hello @Lindap
A warm welcome to DTP

There's info about the Herbert Protocol here:

The Herbert Protocol: For when a vulnerable person goes missing

The Herbert Protocol can help you and the police find someone with Dementia who has gone missing whilst out.

www.agespace.org

and

The Herbert Protocol

West Yorkshire Police adopt national scheme to help people living with dementia and their carers.

www.ageuk.org.uk

The Herbert Protocol Missing Person Incident Form | West Yorkshire Police

The Herbert Protocol is a national scheme being introduced by West Yorkshire police and other agencies which encourages carers to compile useful information which could be used in the event of a vulnerable person going missing.

www.westyorkshire.police.uk