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advice please

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
Am so sorry to hear your day off is cancelled again @jennifer1967 I will now keep fingers and toes crossed for Saturday. In the meantime do as little as possible some things can wait until another day. You are doing a marvelous job and not well yourself so don't put yourself down, you are very understandably weary and tired and need some rest and time for yourself. Sending a hug 🫂
thank you @Wildflowerlady ive just sorted and shredded paper work so done. wasnt that much in the living room. im asking him to do more as its hurting me up and down. ive got some disco music on thats given me a lift.hes on steroids as very breathless. had phone appt with gp this morning. steroids make him feel epic[cant find another word] his sister is going to see a change in him. she hasnt seen him in over 2 yrs.
 

MaNaAk

Registered User
Jun 19, 2016
4,414
0
Essex
Dear @jennifer1967,

I'm so sorry I've just caught up with your post. Fingers crossed for Saturday but I think you need to let your family know you need a break. I think your strength is amazing.

Hugs

MaNaAk
 

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
Dear @jennifer1967,

I'm so sorry I've just caught up with your post. Fingers crossed for Saturday but I think you need to let your family know you need a break. I think your strength is amazing.

Hugs

MaNaAk
morning @MaNaAk im down to shuffling around nowe. did do the shredding of just the living room yesterday but that was it. today nothing is getting done bar the very basics. im not sure what they could do to give me a break. hes back on steroids now as he so breathless again. hes going out on the bus today so i get an hour if im lucky then hes exhausted. strength can be a weakness as well. they all think im strong so let me carry on. he knows how much im struggling. i dont like to ask for help too many times. i constantly struggle with trying to ask for help. i cant keep asking one of them and i have no family to call on. got to sort his blood test appts as well. im not sure how much longer i can carry on without help.
 

Starting on a journey

Registered User
Jul 9, 2019
633
0
Maybe you need to contact your children, all of them and just say “don’t know how much longer I can carry on, I need help”. See what happens........
I feel for you, I am feeling low and tired but I get a break every day as mum sleeps well, and mums not nasty.
 

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
morning @MaNaAk im down to shuffling around nowe. did do the shredding of just the living room yesterday but that was it. today nothing is getting done bar the very basics. im not sure what they could do to give me a break. hes back on steroids now as he so breathless again. hes going out on the bus today so i get an hour if im lucky then hes exhausted. strength can be a weakness as well. they all think im strong so let me carry on. he knows how much im struggling. i dont like to ask for help too many times. i constantly struggle with trying to ask for help. i cant keep asking one of them and i have no family to call on. got to sort his blood test appts as well. im not sure how much longer i can carry on without help.
he didnt react much as it was his sister to how he reacted because it was my son that let him down. my son said that it was a draw and he didnt feel so bad.
 

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
Maybe you need to contact your children, all of them and just say “don’t know how much longer I can carry on, I need help”. See what happens........
I feel for you, I am feeling low and tired but I get a break every day as mum sleeps well, and mums not nasty.
i have 4 adult children. 1 doesnt want to know, 1 does a lot of running around, 1 works in the evenings and on saturdays, partner works and there have young children. she does his tablets in dosset boxes as she is a dispenser in a pharmacy. shes had a really heavy cold so hasnt been round. my husband also has COPD and now on steroids again so a cold is quite bad for him. she does try bto help when shes well. 1 lives in kent, a full-time teacher and has a young son. he doesnt drive. my husband was shielding for much of the year. so i have 2 that can and do help to a degree. my oldest son is a carer for his partner as she has bipolar. i have no extended family at all. his sister is 78 and lives in devon. my sons partner will help me with the housework sometimes. a couple of my grandsons are nearly adults and will help when my son comes. he wont accept help for himself or make my life easier.
 

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
Dear @jennifer1967,

Does your husband have any other relatives that can help? I hope you're okay.

MaNaAk
no he has only a sister, mum, dad and brother died. he has a niece but all his family are in devon. because he moved around the country lorry driving, he sort of lost contact with them. where hes 73, most of the extended family, aunts, uncles have died as well. he didnt keep in contact with his cousins. they are all his age or older. hes not seen them in decades. he came to a different town and being a lorry driver, didnt make friends so there is no-one to call on. i was everything. my friends are a lot older than i am. people my age work. where im 54 and hes 73, i tend to fall though the cracks of both generations. the kids range from 35-27 and all have young families as well. 4 special needs and 2 preschoolers
 

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
thank you, its because of the encouragement and support of this forum and the friends on it that ive been able to carry on caring for him but also that ive been able to make decisions. that i dont have to put up with his behaviour. that i have a right to some sort of life. carers tend to get lost in the caring. i feel more obliged because its my husband and the wedding vows we said to each other all those years ago. i never promised to obey.
 

Starting on a journey

Registered User
Jul 9, 2019
633
0
I wonder if your teacher son could act as an advocate for you? Deal with the doctors etc or any paperwork that is getting you down?
Just had an idea, what about saving up and in the long summer holidays taking a taxi to them in Kent and stay for a few days? Tell husband and social services that you are going and then go. See your grandchild and relax, you could quite honestly tell them you wouldn’t be any bother as I think you would be glad to sit quietly and rest and wouldn’t need entertainment.
 

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
I wonder if your teacher son could act as an advocate for you? Deal with the doctors etc or any paperwork that is getting you down?
Just had an idea, what about saving up and in the long summer holidays taking a taxi to them in Kent and stay for a few days? Tell husband and social services that you are going and then go. See your grandchild and relax, you could quite honestly tell them you wouldn’t be any bother as I think you would be glad to sit quietly and rest and wouldn’t need entertainment.
hes actually my recovery attorney so if i lose capacity he steps in. its the physical things that im having problems with. i can deal with any paperwork as it usually involves me as well.i have to be careful as i said i couldnt travel to devon in the car with my back so kent is about the same. we used to do it on the coach before pandemic. before the chronic pain of my back. it hurts if i stand chatting for 10 minutes at the door. ss have referred him to be taken out to give me a break. he can go out on his own which he has today on the bus but he gets exhausted with the COPD as well. my grandson is 3 and very strong character who tells his parents what hes doing. they dont like him having bad experiences like being told. when any of the kids and grandkids come, they make a break for me as he lights up with them. ive also got willing hands to bring things etc. host mode is on show. so i hope they come to us in the summer and on weekends. my son has a friend that will drive them down for the day and usually my daughter will come as well. it just helps if there is more than me that can be aware of his needs and can get up and down. i probably dont talk to them enough about whats going on and should do more talking.
 

Starting on a journey

Registered User
Jul 9, 2019
633
0
I think it’s time to share your experiences. It may be that they can encourage your husband to a day centre?
I know about the COPD ; mum decided not to use the wheelchair today, just a quick trip to Asda and she’s wiped out...She will sleep soundly this afternoon!!
 

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
I think it’s time to share your experiences. It may be that they can encourage your husband to a day centre?
I know about the COPD ; mum decided not to use the wheelchair today, just a quick trip to Asda and she’s wiped out...She will sleep soundly this afternoon!!
thank you @Starting on a journey i think you are right. hes wiped out as well. now on steroids gives him a boost as hes so breathless and forgets to use his inhaler. i should record all the useful phrases and press button when needed. he phoned my son while out, son phoned me as he couldnt call him back, i phone thinking a problem with bus or him, he wanted to hear a mans voice. we were in a flap. he phoned my daughter yesterday to hear her voice. i know you are right in sharing. i just think its my place to care for him. my son tells me off as he says you are not on your own. hes the one taking him to devon. i was thinking mens shed but not found a local one but will keep looking. thank you for taking the time and challenging my thinking. sometimes you get into a rut thats hard to get out of it
 

Starting on a journey

Registered User
Jul 9, 2019
633
0
Yes, I am in a big rut too, but it’s so easy to offer advice and so difficult to take it!
My mum can be left in the afternoons for three hours so my children tell me on days when I want to, go out. Luckily I drive, I have a thick coat and a book and sit huddled in outdoor cafes with a black coffee...usually get an angry response from my back the next day but....
Think to myself what am I moaning about , but the majority of women my age can do things without weighing up the pros and cons and effect on mum!!
 

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
Yes, I am in a big rut too, but it’s so easy to offer advice and so difficult to take it!
My mum can be left in the afternoons for three hours so my children tell me on days when I want to, go out. Luckily I drive, I have a thick coat and a book and sit huddled in outdoor cafes with a black coffee...usually get an angry response from my back the next day but....
Think to myself what am I moaning about , but the majority of women my age can do things without weighing up the pros and cons and effect on mum!!
you have been brilliant. its hard when you are housebound as i am, so i cant go out which is a pain. i have chronic pain which gets worse if i go out. im only 54 but theres a big age gap with my husband. im looking in to mens shed which would be ideal for him and theres one locally so im going to phone for details and he is willing to go. double win. most women my age can go out. thanks again @Starting on a journey
 

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
ive spoked to the man that does mens sheds and he seems very nice. its 2 hrs twice a week. he wants to go but i need to find a way of getting him there as its not on a direct bus route and too far for him to walk from the nearest bus stop. going to ask my son if he could take him even if its just once a week. he misses conversation with men. it all depends on getting him there and i dont drive. maybe when he meets them, there maybe a member that goes our way. not done a lot today and feel less anxious because the pain level has reduced. hes been out on the bus so is calmer as well. obviously it cant continue as i need to do things but just it helped for the time.
 

ganymede

Registered User
Apr 28, 2021
28
0
ive spoked to the man that does mens sheds and he seems very nice. its 2 hrs twice a week. he wants to go but i need to find a way of getting him there as its not on a direct bus route and too far for him to walk from the nearest bus stop. going to ask my son if he could take him even if its just once a week. he misses conversation with men. it all depends on getting him there and i dont drive. maybe when he meets them, there maybe a member that goes our way. not done a lot today and feel less anxious because the pain level has reduced. hes been out on the bus so is calmer as well. obviously it cant continue as i need to do things but just it helped for the time.
@jennifer1967 is there a disability transport service in your area? Age UK provide them in some areas and Councils in others if your OH is registered disabled, might be worth a look?
It's great to hear your pain level has reduced today when you have done less. Sounds like you need more days like that! I hope your son can help support you when you say that to your OH.
 

jennifer1967

Registered User
Mar 15, 2020
4,586
0
Southampton
@jennifer1967 is there a disability transport service in your area? Age UK provide them in some areas and Councils in others if your OH is registered disabled, might be worth a look?
It's great to hear your pain level has reduced today when you have done less. Sounds like you need more days like that! I hope your son can help support you when you say that to your OH.
thank you @ganymede . someone suggested dial a ride so will look into that tomorrow. today was a one off as housework tomorrow but hopefully nothing on saturday but peace. i will have to start clearing the house again but at least just for one day it was luxury
 

Bikerbeth

Registered User
Feb 11, 2019
2,011
0
Bedford
I am sorry to hear that you did not get your ‘day off’ today. I know sometimes it can’t be helped when people offer you a break and you get your hopes up and then they get dashed it can be more upsetting. I too hope that Saturday happens.
Do you have a local Alzheimers group, because with Mum they gave her a leaflet with ‘volunteer drivers’ in that only charge for petrol? I guess similar scheme to the one Ganymede suggested.
Glad your pain level has reduced a bit today. I know you have things that need to be done but could you give yourself a bit more of a rest.