Losing my own life as a carer

[Kremlin]

Hi,
I am a 78 yr old with an 81 year old husband with dementia. I feel now that my own life is slipping away as I am gradually becoming a fuller time carer. I no longer can rely on him to do things properly an I worry about him getting lost , as he already has done. I have had to give up several things as being out of the house for too long not only worries him but he loses things and panics. He knows he had a bad memory but is not aware of anything else. You all know about the repetition and the confusion and all the other goings on, but he sometimes gets very cross with me and that hurts. When you spend so much time looking after someone and that happens I have to cry. It's good just to be able to put this down. I know others are worse off than I am, but all I know is that it will get worse.

 

[marmarlade]

losing my life as a carer

Hi,
I am a 78 yr old with an 81 year old husband with dementia. I feel now that my own life is slipping away as I am gradually becoming a fuller time carer. I no longer can rely on him to do things properly an I worry about him getting lost , as he already has done. I have had to give up several things as being out of the house for too long not only worries him but he loses things and panics. He knows he had a bad memory but is not aware of anything else. You all know about the repetition and the confusion and all the other goings on, but he sometimes gets very cross with me and that hurts. When you spend so much time looking after someone and that happens I have to cry. It's good just to be able to put this down. I know others are worse off than I am, but all I know is that it will get worse.

i looked after my hubby for 5 years, he to used to panic when he couldnt see me and some times he would not do as i asked,but this year i had to put him into care ,as i was so tired of the 24/7 looking after him.my life to slipped away as i couldnt leave him at all it was the hardest thing i ever did putting him into care ,but 10 months down the line hes a different person ,he talks walks goes out with us.he would not have been like this having kept him at home ,he now has people all day to talk to things to do that i couldnt do with him at home, and i now begin to feel more like myself, its hard and yes i still cry as i to know things will get worse ,but we are both happier for this move

 

[Izzy]

Hi and welcome to TP.

I'm sorry to read of your situation and can understand how you must feel. I am 64 and my husband is 85. He was diagnosed 14 years ago. Our lives have changed dramatically over this time. I'm lucky though and have carers who help to look after Bill and give me some time to myself. Have you had an assessment by the social work department? If not it might be helpful to do so. My husband needs personal care and 24/7 supervision and I'm lucky he accepts carers. I know not everyone will accept them.

ThIs fact sheet might help -

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

The other thing I wondered about was whether you had been in touch with your local Alzheimer's Society. It might be helpful to talk things through with something be there.

You will find your local branch here -

https://www.alzheimers.org.uk/site/...D=200121&_ga=1.22170939.1265873382.1429178343

Keep posting. You will always get help and support here.

 

[Scarlett123]

Hi,
I am a 78 yr old with an 81 year old husband with dementia. I feel now that my own life is slipping away as I am gradually becoming a fuller time carer. I no longer can rely on him to do things properly an I worry about him getting lost , as he already has done. I have had to give up several things as being out of the house for too long not only worries him but he loses things and panics. He knows he had a bad memory but is not aware of anything else. You all know about the repetition and the confusion and all the other goings on, but he sometimes gets very cross with me and that hurts. When you spend so much time looking after someone and that happens I have to cry. It's good just to be able to put this down. I know others are worse off than I am, but all I know is that it will get worse.

You couldn't have come to a better place than here on Talking Point, to air your worries. It is so upsetting and distressing when you are experiencing the problems that being a full time carer brings.

Does hubby attend a Day Club? You may find that even a few hours, a couple of times a week, will give you the chance to recharge your batteries a bit. I wish you well. xxx

 

[fizzie]

Hello I'm so sorry to hear you are having such a difficult time.
Are you getting any help? There is help out there to free up some time just for you and also to meet others over a cup of coffee. It is so much easier if you can share the burden.

if you have an assessment from social services you may be able to get some day care/lunch club for hubby. Here is some other practical info you might find useful

You can phone Social Services Adult Care Duty Desk and ask for an assessment - if you ask for day care that should be an option - a day centre where hubby can go for lunch and activities. As well as our social services centre we also have Crossroads Day Centre where people can go for up to 3 days and it is also worth googling Dementia activities + your area to see what is going on. There is probably a fair bit but you need to search for it. Some care homes also do 'day care' which can be useful but I would try the day centres first after you have asked social services for an assessment as it might be free for you.

You can also ask for a carers assessment - this will give you a break and give you some 'free' hours of help possibly

It will be helpful for you to apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day for mum and write down the help that he needs (not the help that he gets but what she NEEDS). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask

I would strongly advise you to join your local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off work to go and find out what help there is in your area over a cup of coffee.

The Dementia helpline is a useful number to have

lzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

The Helpline is usually open from:
9am - 8pm Monday to Wednesday
9am - 5pm on Thursday and Friday
10am - 4pm on Saturday and Sunday
As is age uk

Age UK Advice line free national advice line that is open 365 days a year To talk to someone, just call 0800 169 2081.

hope some of this helps but there is lots of help on here too and comfort and support. Thinking of you xxxxxxxxxx

 

[esmeralda]

I do really feel for you Kremlin, it's very hard to adjust to this new life you never expected and I can't imagine anyone would have chosen. Very good advice from previous posters. You do have to find a way to live well within the confines of this horrible illness and I hope you can access the help which means you can do this. Glad you have found your way here. Big hugs to you.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Big "H"]

Life goes on!

Hi,
I am a 78 yr old with an 81 year old husband with dementia. I feel now that my own life is slipping away as I am gradually becoming a fuller time carer. I no longer can rely on him to do things properly an I worry about him getting lost , as he already has done. I have had to give up several things as being out of the house for too long not only worries him but he loses things and panics. He knows he had a bad memory but is not aware of anything else. You all know about the repetition and the confusion and all the other goings on, but he sometimes gets very cross with me and that hurts. When you spend so much time looking after someone and that happens I have to cry. It's good just to be able to put this down. I know others are worse off than I am, but all I know is that it will get worse.

Hi there Kremlin
I am 74 and my wife is 70 and has been diagnosed for 5 years I feel the same as you even though she goes to day Care 3 days a week, time seems to fly by and you don't have time for yourself after doing shopping and housework. My son and daughter in law are absolutely useless in fact me son only rings once every 2 weeks, but I keep on doing what I have to for the woman I have loved for 50 years.
There are Occasions when I just breakdown and cry and I feel better for it.
Big"H"

 

[esmeralda]

Hi Big "H", and welcome. Do you have any help with housework? I have someone come in, only 2 hours once a fortnight, so not too expensive. She catches up with the ironing (I don't iron many things) and we blitz the place together, then I don't worry too much about dusting and hoovering between times, even if it looks like it needs doing I think -'Oh well, that's Linda's job' so I don't stress about it. It's good to see where you can cut corners so that you can get some time to yourself when your wife is at day care.

 

[Big "H"]

Housework/Ironing

Hi Big "H", and welcome. Do you have any help with housework? I have someone come in, only 2 hours once a fortnight, so not too expensive. She catches up with the ironing (I don't iron many things) and we blitz the place together, then I don't worry too much about dusting and hoovering between times, even if it looks like it needs doing I think -'Oh well, that's Linda's job' so I don't stress about it. It's good to see where you can cut corners so that you can get some time to yourself when your wife is at day care.

Hi Esmeralda

No I don't have anyone to do the Housework and as far as Ironing is concerned I just don't do it my thought is it will crease up anyway so why bother, most modern material are crease resistant anyway.
I have now got the opinion that if anybody says the place is in need of dusting I just hand them a Duster.My Daughter in Law has said it once but when I offered her a Duster she Clammed Up, she never ever offers any Help.

Big"H"

 

[esmeralda]

Hi Esmeralda

No I don't have anyone to do the Housework and as far as Ironing is concerned I just don't do it my thought is it will crease up anyway so why bother, most modern material are crease resistant anyway.
I have now got the opinion that if anybody says the place is in need of dusting I just hand them a Duster.My Daughter in Law has said it once but when I offered her a Duster she Clammed Up, she never ever offers any Help.

Big"H"

Sounds like you have a healthy attitude to housework Big 'H'. I'm sorry you don't get any help from those who maybe could offer it. Those friends and family who are happy to hand out advice regarding situations of which they know nothing, but are nowhere when help is needed, are generally known as 'invisibles' hereabouts. I hope you can find some way to have a little time and/or support for yourself.

Glad you've found this place anyway, lots of friendship and advice available.

 

[Frederic H]

Hi,
I am a 78 yr old with an 81 year old husband with dementia. I feel now that my own life is slipping away as I am gradually becoming a fuller time carer. I no longer can rely on him to do things properly an I worry about him getting lost , as he already has done. I have had to give up several things as being out of the house for too long not only worries him but he loses things and panics. He knows he had a bad memory but is not aware of anything else. You all know about the repetition and the confusion and all the other goings on, but he sometimes gets very cross with me and that hurts. When you spend so much time looking after someone and that happens I have to cry. It's good just to be able to put this down. I know others are worse off than I am, but all I know is that it will get worse.

Things change imperceptibly. We have moved recently to a retirement village which suits my partner very well.No stairs always knows where i am we have lunches in the village etcetc.She is well content.
However to achieve this i have given up every thing.it was a struggle before we moved going out and more so now.
i do get p.....d off when She makes nasty comments about say me leaving the newspapers on the floor ,when I do all the cooking cleaning shopping laundry and help with dressing,and I have to remind my self that it is not really her and supress my anger.If this is what God has deemed my life for the next how long there is not much I can do.Like Kremlin I appreciate my moans are nothing compared with what other carers are doing but happy Christmas to all of us !

 

[balloo]

Cost

I found out today that if we need a sensory pad for MIL so I know when she is getting out od bed in night as she very often takes her pants off and you guest iit it is spread all over bathroom I wanted to pre-empt this by having an alarm so I can get up wither they cost £6 a week to rent as cannot get from NHS but I can buy one from them for £149 I have found one for £70 hope it will do the same job. I think this is discusting we as carers are saving the government thousands but they wont help us . was going to talk to MP . Is anyone else having to pay or is it just my area Northanptonshire

 

[pussygalore]

My partner is 73 and I am having the same problems as you. However the Memory Clinic arranged for Social Services to contact me and assess me for short term respite. This will enable us to go shopping, hairdressers (I was having to take my partner to the hairdresser with me because I could not leave him at home). It will take a few weeks to be put in place but I cannot wait just for my own sanity. I wish you well and hope that you soon get the respite that you deserve.

 

[June the spoon]

Hi there Kremlin
I am 74 and my wife is 70 and has been diagnosed for 5 years I feel the same as you even though she goes to day Care 3 days a week, time seems to fly by and you don't have time for yourself after doing shopping and housework. My son and daughter in law are absolutely useless in fact me son only rings once every 2 weeks, but I keep on doing what I have to for the woman I have loved for 50 years.
There are Occasions when I just breakdown and cry and I feel better for it.
Big"H"

Have you or are you able to get a cleaner that way you would have more free time for you