How do I decide what help I need

[mickeyplum]

My husband is 91 and apart from dementia is as fit as a fiddle. I am 85, his full-time carer but my health is worsening. I have a cleaner and gardener and have managed everything else fairly well until recently. My energy levels are half of his and he is always asking me to drive him out to a pub. He refuses to go with anyone apart from the family. He easily accepts a 'no' from me but then will suggest going out an hour later, and so it goes on. The family take him out when they can but then he wants to go again a few hours after they bring him home.
The family are increasingly worried about me. They are planning a family meeting so they can sort out how best to help and have asked me to make a list of the things I need help with. I know this seems a stupid question but I'm racking my brains to think of anything.
I have just had to start showering him daily, which embarrasses him as he says he doesn't need help so I know he would never accept a carer coming in to do anything personal for him. He doesn't need help with feeding, toileting etc, yet, and he got too anxious when I tried to introduce a 'be-friender'. He is just content to be with me.
The only thing I struggle with is the sense of isolation, sitting here all day worrying about his health, my health, and what will happen to us in the future. If I say this to my loving family they going to feel guilty and upset that due to their own work and family commitments they can't do more.
I have told them for years that they should only visit when they want to and that I never expect them to come out of duty. Now it seems like I'm piling the guilt on them and forcing them to do just that.
This seems like a stupid question considering what bigger traumas other folk on here are dealing with but I think I need an outside view please.

 

[White Rose]

Oh my goodness you shouldn't have to be dealing with all that @mickeyplum. Accept your family's offer of help. I'm afraid the PWD will always be content with the person closest to them doing all the caring, they don't see how hard it is, how tiring and how much work. You might need to put your foot down and say he has to accept carers or a befriender. My PWD is sitting around feeling sorry for himself and muttering about dying soon (he's won't be, he's actually very healthy) because I am not sitting there entertaining him. I've found things for him to do all morning, I've just taken him for a walk, made his lunch and coffee, put the TV on for him. I have a lot to do and I'm tired, I really don't have the energy to spend the day finding things for him to do so I just have to be harsh and say he's got to sit and watch TV. It's draining and I'm a lot younger than you. Maybe you could visit a local memory cafe to meet other carers. I've just found out about Carer Assessments and Care Needs Assessment that the council do - you need to phone the Adult Social Care Dept. Age UK might help as well. Good luck and look after yourself!

 

[margherita]

I can relate to your situation.
OH and I have been living in the country in a god forsaken place for five years. It was his choice, not mine.
He was diagnosed with dementia four years ago and , like your husband, he doesn't need help with feeding, toileting etc, but his memory is very poor and his reasoning faculties are even poorer . So there is nobody I can talk with . He is awfully clinging and doesn't want anyone's company but mine. It is difficult for me even to go to the supermarket on my own because he wants to join me.
What I need is a bit of freedom and some me time, which I could have only far from him. He would never accept another person at home while I am away. He says he can manage on his own, which is not obviously true.
One day I might decide to go away ,when I am at my tether's end...and come what may.
I am sorry, I am not helpful. But I empathize with you.

 

[AliceA]

This is difficult especially when we are older and in failing health. I really empathise with this.
The crunch came in August when a very weak man came home home from hospital, post hospital Carers came twice a day. This turned into a care package into three a day. Until then I was exactly like you except we had no transport at all. Until that mine would have said the same.
Carers are a mixed blessing, weekdays are better but time of calls is erratic. It is difficult to plan anything unless a lot of prior warning.
Some are better than others, new ones have to be taught how what and when!
I hope you can plan some more help, but it is not easy to do.
We are isolated too because services that helped us be independent were axed.
A Carers Assessment may help. You can blame that! Xxx

 

[Grannie G]

Hello @mickeyplum

My husband was similar to your husband and refused to have anyone in the house to help him.

I solved this by saying I needed help and managed to get agency carers in on that pretext. They agreed to do light housework initially and gradually gained my husband`s confidence.

Once he accepted they were no threat he softened his attitude, allowed them to make him some lunch while I `went to the shops` and eventually accepted personal care.

Whoever came to the house with regard to my husband`s dementia came to help me and I found he would accept this more readily.

 

[Grahamstown]

I have just had to start showering him daily, which embarrasses him as he says he doesn't need help so I know he would never accept a carer coming in to do anything personal for him.

I was in the same boat a few months ago and getting to the end of my tether. My children and friends similarly said I should get some help. Apart from the fact that we are self funding which may be a factor for many, the process of getting help in our area is not just that easy. I finally settled on a charitable group who operate care homes and an Care at home service. My husband also insisted that he didn’t need help, wouldn’t have anyone else, so in the end I just organised it and presented it as a done deal which would help us both. Fortunately the first lady who came was experienced super efficient and knew just what to do and from then on he has accepted it, even though I have had to shepherd the others until they get the hang of it. Every person with the disease is an individual with different needs so a skilled carer can usually adapt. It’s the more inexperienced who I feel I have to support. But it is working out. He has three regular ladies which is a good thing because they each have their strengths and weaknesses. He gets more stimulation from the different company and they chat to him and bring out information which surprises me sometimes. That’s how I did it and I am so glad that I put this in place as he gets sicker and sicker with the disease, having nothing else wrong with him.

 

[AliceA]

Granny is so right. There was a time when I used phrases, such as I know we. Emphasis we, do not like this or that but it is a way to make sure that ........
Something's were harder in the past especially when he wanted to do a DIY job! He still thinks he can on some days!
The house work helper is because of me not being able. Sadly true! She is chatty and cheers me up too!
Personal care was accepted because it was a transition from hospital! He still tries to get ahead of them on some days,
But you need help now! Please get it by hook or by crook! Xxx

 

[AliceA]

I was in the same boat a few months ago and getting to the end of my tether. My children and friends similarly said I should get some help. Apart from the fact that we are self funding which may be a factor for many, the process of getting help in our area is not just that easy. I finally settled on a charitable group who operate care homes and an Care at home service. My husband also insisted that he didn’t need help, wouldn’t have anyone else, so in the end I just organised it and presented it as a done deal which would help us both. Fortunately the first lady who came was experienced super efficient and knew just what to do and from then on he has accepted it, even though I have had to shepherd the others until they get the hang of it. Every person with the disease is an individual with different needs so a skilled carer can usually adapt. It’s the more inexperienced who I feel I have to support. But it is working out. He has three regular ladies which is a good thing because they each have their strengths and weaknesses. He gets more stimulation from the different company and they chat to him and bring out information which surprises me sometimes. That’s how I did it and I am so glad that I put this in place as he gets sicker and sicker with the disease, having nothing else wrong with him.[/QUOTE

Enjoy Christmas in any way you can, thinking of you xxx

 

[Grahamstown]

“Enjoy Christmas in any way you can, thinking of you xxx” I have got the correct schedule in place for the next few days, my cleaning lady will come on Christmas Eve so that I can go and pick up my Christmas food. Our son is coming the same day. Christmas Day is a normal day for my husband but I have asked friends from our neighbourhood group to come for Christmas drinks in the morning, and family will come on Boxing Day. I want my children and grandchildren to have a family Christmas without having to worry about us. We have had zillions of wonderful family Christmas’s all pretty much a template for every year and I have broken the mould this year and feel relaxed. I find that if I spread the treats of visitors it’s much better than one big doo. I used to work every Christmas as a young working woman in nursing and then midwifery, and people are born, people get sick and people die irrespective of what time of year it is. I always liked working then and regard myself as working now, it just happens to be one to one with my own husband. Never would I have thought it but as we all know, it happens and we have to get on with it one way or another. Joyful thoughts to you Alice and I am thinking of you for your treatment.

It’s worth adding that I have cancelled visits on the bank holidays and shall manage alone. This has been made easier by the support during normal times.

 

[Vitesse]

My husband is 91 and apart from dementia is as fit as a fiddle. I am 85, his full-time carer but my health is worsening. I have a cleaner and gardener and have managed everything else fairly well until recently. My energy levels are half of his and he is always asking me to drive him out to a pub. He refuses to go with anyone apart from the family. He easily accepts a 'no' from me but then will suggest going out an hour later, and so it goes on. The family take him out when they can but then he wants to go again a few hours after they bring him home.
The family are increasingly worried about me. They are planning a family meeting so they can sort out how best to help and have asked me to make a list of the things I need help with. I know this seems a stupid question but I'm racking my brains to think of anything.
I have just had to start showering him daily, which embarrasses him as he says he doesn't need help so I know he would never accept a carer coming in to do anything personal for him. He doesn't need help with feeding, toileting etc, yet, and he got too anxious when I tried to introduce a 'be-friender'. He is just content to be with me.
The only thing I struggle with is the sense of isolation, sitting here all day worrying about his health, my health, and what will happen to us in the future. If I say this to my loving family they going to feel guilty and upset that due to their own work and family commitments they can't do more.
I have told them for years that they should only visit when they want to and that I never expect them to come out of duty. Now it seems like I'm piling the guilt on them and forcing them to do just that.
This seems like a stupid question considering what bigger traumas other folk on here are dealing with but I think I need an outside view please.

I know exactly how you feel, except that I don’t have family to support me. You shouldn’t feel guilty about getting some help from the family, because if you don’t you will end up making yourself ill. However, the family have been busy lives to lead, and can’t be there all the time. I reached rock bottom a few weeks ago and started a thread ‘I need someone to talk to’ and several people had the same issue. My husband refused a PA to take him out, a day Centre placement, and just wants me here all the time. I have spent hours researching various options, but have come to the conclusion that the best things for us is somewhere we can go or do together. We go to a Memory Cafe, a dementia group at the local Art Gallery, and a dementia support group where the carer can take the PWD along. These are run once a month, and is somewhere where I can chat to other people and he is content to be with me. I have also found a befriender who has started to come and have a coffee with us for an hour every fortnight or so. It doesn’t give me time out on my own, but it is again someone to chat with. I am hopeful, that perhaps as he gets used to other people around us, he may be more comfortable if we get carers in the future.

 

[mickeyplum]

I know exactly how you feel, except that I don’t have family to support me. You shouldn’t feel guilty about getting some help from the family, because if you don’t you will end up making yourself ill. However, the family have been busy lives to lead, and can’t be there all the time. I reached rock bottom a few weeks ago and started a thread ‘I need someone to talk to’ and several people had the same issue. My husband refused a PA to take him out, a day Centre placement, and just wants me here all the time. I have spent hours researching various options, but have come to the conclusion that the best things for us is somewhere we can go or do together. We go to a Memory Cafe, a dementia group at the local Art Gallery, and a dementia support group where the carer can take the PWD along. These are run once a month, and is somewhere where I can chat to other people and he is content to be with me. I have also found a befriender who has started to come and have a coffee with us for an hour every fortnight or so. It doesn’t give me time out on my own, but it is again someone to chat with. I am hopeful, that perhaps as he gets used to other people around us, he may be more comfortable if we get carers in the future.

Wow, I didn't expect so many caring people to reply to what had seemed a stupid question, especially at such a busy time for you all. I should have known from previous experience on Tipping Point that no matter how we each think our problem is unique to us, we find such support from others in the same boat who understand. I will study all your replies and see what I can take from each so thanks a million.
Until recently I have felt well enough to drive us to the nearby towns for shopping, or take him out for lunch, but nowadays I will only drive when I know I'm safe to drive and even then just a 10 mins drive. He says if I don't want to drive, he can drive. I tell him he has had no licence and hasn't driven for 6 years. His reply? 'Well, nobody will know.' They'll know soon enough when they have to unwind our car from round a lamp-post!
He doesn't realise that taking him anywhere now entails getting him in and out the car, in and out of a cafe or pub, getting him seated and then joining a queue at the bar. And all the time taking care neither of us fall down.
I know that when he is further along this 'journey' (to use modern lingo) he will go to a day centre or do whatever he's told but luckily, or unluckily depending on how you look at it, he is still very much aware of his own decisions and very proud of his independance.
He enjoys travel documentaries and wild-life films on TV and I always have a bunch of Westerns that I record each week so at the moment we are watching yet another John Wayne film together. Yawn yawn. It's a wonder my living room walls aren't full of bullet holes!
Thanks again and good wishes to all of you.

 

[Vitesse]

Wow, I didn't expect so many caring people to reply to what had seemed a stupid question, especially at such a busy time for you all. I should have known from previous experience on Tipping Point that no matter how we each think our problem is unique to us, we find such support from others in the same boat who understand. I will study all your replies and see what I can take from each so thanks a million.
Until recently I have felt well enough to drive us to the nearby towns for shopping, or take him out for lunch, but nowadays I will only drive when I know I'm safe to drive and even then just a 10 mins drive. He says if I don't want to drive, he can drive. I tell him he has had no licence and hasn't driven for 6 years. His reply? 'Well, nobody will know.' They'll know soon enough when they have to unwind our car from round a lamp-post!
He doesn't realise that taking him anywhere now entails getting him in and out the car, in and out of a cafe or pub, getting him seated and then joining a queue at the bar. And all the time taking care neither of us fall down.
I know that when he is further along this 'journey' (to use modern lingo) he will go to a day centre or do whatever he's told but luckily, or unluckily depending on how you look at it, he is still very much aware of his own decisions and very proud of his independance.
He enjoys travel documentaries and wild-life films on TV and I always have a bunch of Westerns that I record each week so at the moment we are watching yet another John Wayne film together. Yawn yawn. It's a wonder my living room walls aren't full of bullet holes!
Thanks again and good wishes to all of you.

We are just the same, except our TV watching is snooker. I put on recordings of past snooker matches and he has no idea he’s seen them before. I can recite the commentary word for word, but it keeps him occupied!!!

 

[White Rose]

Wow, I didn't expect so many caring people to reply to what had seemed a stupid question, especially at such a busy time for you all. I should have known from previous experience on Tipping Point that no matter how we each think our problem is unique to us, we find such support from others in the same boat who understand. I will study all your replies and see what I can take from each so thanks a million.
Until recently I have felt well enough to drive us to the nearby towns for shopping, or take him out for lunch, but nowadays I will only drive when I know I'm safe to drive and even then just a 10 mins drive. He says if I don't want to drive, he can drive. I tell him he has had no licence and hasn't driven for 6 years. His reply? 'Well, nobody will know.' They'll know soon enough when they have to unwind our car from round a lamp-post!
He doesn't realise that taking him anywhere now entails getting him in and out the car, in and out of a cafe or pub, getting him seated and then joining a queue at the bar. And all the time taking care neither of us fall down.
I know that when he is further along this 'journey' (to use modern lingo) he will go to a day centre or do whatever he's told but luckily, or unluckily depending on how you look at it, he is still very much aware of his own decisions and very proud of his independance.
He enjoys travel documentaries and wild-life films on TV and I always have a bunch of Westerns that I record each week so at the moment we are watching yet another John Wayne film together. Yawn yawn. It's a wonder my living room walls aren't full of bullet holes!
Thanks again and good wishes to all of you.

Pleased to see you've managed to retain a sense of humour - keep smiling if you can!

 

[Ruth1974]

Oh i am so proud of your family! Bless the lot of them!
I meet most of my husbands needs but once a month a friend sleeps over at my house to look after him and i sleep at another friend's house. Sometimes we go out, sometimes i literally get a shower and go to bed and sleep!

Your family want to help, so write a list! There will be some things they can help with and some things they can't, but anything that helps you feel supported will be great - and they will feel happy to be helping.

Let them help, they love you both.

My husband is 91 and apart from dementia is as fit as a fiddle. I am 85, his full-time carer but my health is worsening. I have a cleaner and gardener and have managed everything else fairly well until recently. My energy levels are half of his and he is always asking me to drive him out to a pub. He refuses to go with anyone apart from the family. He easily accepts a 'no' from me but then will suggest going out an hour later, and so it goes on. The family take him out when they can but then he wants to go again a few hours after they bring him home.
The family are increasingly worried about me. They are planning a family meeting so they can sort out how best to help and have asked me to make a list of the things I need help with. I know this seems a stupid question but I'm racking my brains to think of anything.
I have just had to start showering him daily, which embarrasses him as he says he doesn't need help so I know he would never accept a carer coming in to do anything personal for him. He doesn't need help with feeding, toileting etc, yet, and he got too anxious when I tried to introduce a 'be-friender'. He is just content to be with me.
The only thing I struggle with is the sense of isolation, sitting here all day worrying about his health, my health, and what will happen to us in the future. If I say this to my loving family they going to feel guilty and upset that due to their own work and family commitments they can't do more.
I have told them for years that they should only visit when they want to and that I never expect them to come out of duty. Now it seems like I'm piling the guilt on them and forcing them to do just that.
This seems like a stupid question considering what bigger traumas other folk on here are dealing with but I think I need an outside view please.

 

[Roseleigh]

I'm afraid the PWD will always be content with the person closest to them doing all the caring, they don't see how hard it is, how tiring and how much work. You might need to put your foot down and say he has to accept carers or a befriender.

Nail on head. And it becomes harder and harder as the PWD s cognition declines and they offer less and less in return and become more demanding.

Mickey Plum, you are 85. This may sound harsh but you may not have many years left. Do you want to spend the rest of them minding your husband? He could even outlive you, and your children will then put him in a care home. Why not put him in a care home now, look after your own health, see friends, visit your children. You may have to spend your savings but the LA will take over when they are reduced and they;ll be spent anyway if anything happens to you.

 

[AliceA]

Wow, I didn't expect so many caring people to reply to what had seemed a stupid question, especially at such a busy time for you all. I should have known from previous experience on Tipping Point that no matter how we each think our problem is unique to us, we find such support from others in the same boat who understand. I will study all your replies and see what I can take from each so thanks a million.
Until recently I have felt well enough to drive us to the nearby towns for shopping, or take him out for lunch, but nowadays I will only drive when I know I'm safe to drive and even then just a 10 mins drive. He says if I don't want to drive, he can drive. I tell him he has had no licence and hasn't driven for 6 years. His reply? 'Well, nobody will know.' They'll know soon enough when they have to unwind our car from round a lamp-post!
He doesn't realise that taking him anywhere now entails getting him in and out the car, in and out of a cafe or pub, getting him seated and then joining a queue at the bar. And all the time taking care neither of us fall down.
I know that when he is further along this 'journey' (to use modern lingo) he will go to a day centre or do whatever he's told but luckily, or unluckily depending on how you look at it, he is still very much aware of his own decisions and very proud of his independance.
He enjoys travel documentaries and wild-life films on TV and I always have a bunch of Westerns that I record each week so at the moment we are watching yet another John Wayne film together. Yawn yawn. It's a wonder my living room walls aren't full of bullet holes!
Thanks again and good wishes to all of you.

Made me smile, a bit ruefully but I could picture it well, we are much the same. Enjoy Christmas in anyway you can. X

 

[mickeyplum]

Thanks again to all of you. Yes he could outlive me, his aunt died at 109. He has a slow-growing lung cancer but I'm sure a little thing like that won't hold him back. No symptoms so far, and he's forgotten what the consultant said a year ago so his world is remains rosy and happy and worry-free