Caring for Dad and I feel Alone.

[Mtarfa]

Dad who is 82 was diagnosed with vascular dementia 4 months ago. He was in hospital after a fall and the mental health authority said he can not live at home unless someone was there, I therefore moved in look after dad. From day one I had no idea what to expect from dad coming out from his bedroom 12 times to say good night on my first evening. After a few weeks the health team said dad seems ok you are doing a good job we will ket you get on with it and no mire visits from them. I try my best and get up most days at 6ish ,medication for dad is given and we drive to get his paper at 7am, the mornings we go shopping or for a general ride out and walk. We get back dad will read his paper again and again. He may watch a little tv but finds it hard to sit still. He will open and close the back door maybe 10 times a hour, constantly wipe things clean which he has already done. I will cook his tea and a hour later he will as when we having tea. His short term memory is getting worse ie I will make him a cupa then 5 minutes later he will go to kitchen and make another. Find it easier when we are out and about. Going to the coast was excellent. I struggle with a groundhog day feeling. I have had 6 hours off or on my own in 4 months and feel drained,my brother who works full time pops in gives me x amount of money towards food etc stays half a hour and goes . He takes dad out for Sunday lunch when he can but that's for about a hour or so, when I do have that time I just go and do a food shop. I am shattered come 9pm and thinking what to do the next day for dad ie cleaning, washing taking him out. Feel guilty as he reads the paper over and over as there must be something I can do for him. I feel there is no help but did see a day center from 8.30 till 3.30 and they do activities , have a 2 course lunch and have entertainers etc in the afternoon . They say they have a one to one support. It would enable dad sometime with other people but not sure how he will get on with others, plus I get some hours to myself. I have ranted on as I am confused, lost and feel so alone .

 

[CardiffGirlInEssex]

This is heart rending, you are entitled to a life, you should not be expected to carry this burden alone, others with more experience will be online soon with good advice I’m sure, but please please contact your own and/or your dad’s GP urgently to find out how to get proper assessment for him as a person with dementia and for yourself as his carer. I get so angry with the way it is just assumed people will carry in without any support at all, almost using emotional blackmail with family members to put the whole burden of caring on them in situations like this.

 

[Izzy]

Hi @Mtarfa and welcome to the forum.

I’m sorry to read about your situation. It must be hard for you and I really do think you need some time out. The day centre seems like a good idea.I’m sure they would cope with your dad well and it would give you some time to yourself.

I agree that you need to get an up to date assessment of your dad’s needs and a carer’s assessment for yourself. This link gives some information on that process -

https://www.alzheimers.org.uk/get-support/legal-financial/assessment-care-support-england

It might also be useful to look into what other support might be available locally. If you put your postcode in here you might find something suitable -

https://www.alzheimers.org.uk/find-support-near-you


Do keep posting on the forum. You’ll get lots of valuable support here.

 

[Marcelle123]

You cannot carry on like this. You need respite and rest, some time to yourself.
Izzy's advice above seems very sound.

You care and you are doing your best, but you do need to think of yourself too.

Hoping you can get some more help, & thinking of you. xx

 

[marionq]

Grab the chance of a day centre with both hands! It is s lifeline in so many ways. Company and stimulation for him and a breather and source of info for you. Don’t hesitate to join any groups your LA or churches might have.

 

[Feistywoman]

It’s such a difficult situation to be in, I do feel for you. Yes, definitely go for the day centre, it’ll give you a little respite. Ask for a carers assessment along with an up to date assessment of your Dads needs. Ask your brother for help, tell him how you feel, it may be that he thinks you’re skipping along merrily, tell him you need some time out. Please ask for help now before you feel any more isolated, you are entitled to live your own life too.

 

[Duggies-girl]

Hi @Mtarfa I was in the same place that you are in looking after dad with no help for over a year although I did not move in. I had to be there for breakfast and dinner and did all of dad's shopping and appointments and more. It was exhausting and I had no help or life of my own. Dad was in hospital earlier this year and it was clear to me that dad should go into a care home when he came out but I was talked out of it by family.

Now dad needs someone with him 24/7 as he is at risk of falling and often does not know where he is at night. I cannot do this myself 24/7 and have demanded help or dad will go into a care home. I now have help now although it is mostly me but I do get time out, I actually had a proper holiday this year.

You cannot carry on like this. I know how it is and it is not sustainable. Your brother must get time off and he needs to put himself out and help you. I take it that you have given up work and now have no income while your brother is happily living his own life. I have been there and done that and it is not good. Your dad is 82 and may go on for years and you can't carry on forever as it will make you ill.

You don't mention any other family or why your dad could not go into a care home. If it is because of any inheritance, then it really is not worth it and your brother is laughing because you are doing everything and he is doing nothing.

My dad is only still at home because he has terminal cancer and I felt that it would be mean of me not to put myself out for him when he has limited time left but if he was not ill then he would be in a care home now.

I am now in my 3rd year of caring for dad and the time is stretching out now with Christmas approaching again and we did not expect him to see last Christmas but here we are again.

What I am saying is please don't let this go on like this because it will make you ill, it is too much and you have a right to a life as well.

 

[Duggies-girl]

@Mtarfa Your dad should be paying for food and dare I say for your food too while you are living there so why is your brother paying for food. Do you have any income of your own and why does your dad not pay. My dad has his own money and I use it to shop for him.

Does your brother control your dad's money.

 

[Palerider]

Dad who is 82 was diagnosed with vascular dementia 4 months ago. He was in hospital after a fall and the mental health authority said he can not live at home unless someone was there, I therefore moved in look after dad. From day one I had no idea what to expect from dad coming out from his bedroom 12 times to say good night on my first evening. After a few weeks the health team said dad seems ok you are doing a good job we will ket you get on with it and no mire visits from them. I try my best and get up most days at 6ish ,medication for dad is given and we drive to get his paper at 7am, the mornings we go shopping or for a general ride out and walk. We get back dad will read his paper again and again. He may watch a little tv but finds it hard to sit still. He will open and close the back door maybe 10 times a hour, constantly wipe things clean which he has already done. I will cook his tea and a hour later he will as when we having tea. His short term memory is getting worse ie I will make him a cupa then 5 minutes later he will go to kitchen and make another. Find it easier when we are out and about. Going to the coast was excellent. I struggle with a groundhog day feeling. I have had 6 hours off or on my own in 4 months and feel drained,my brother who works full time pops in gives me x amount of money towards food etc stays half a hour and goes . He takes dad out for Sunday lunch when he can but that's for about a hour or so, when I do have that time I just go and do a food shop. I am shattered come 9pm and thinking what to do the next day for dad ie cleaning, washing taking him out. Feel guilty as he reads the paper over and over as there must be something I can do for him. I feel there is no help but did see a day center from 8.30 till 3.30 and they do activities , have a 2 course lunch and have entertainers etc in the afternoon . They say they have a one to one support. It would enable dad sometime with other people but not sure how he will get on with others, plus I get some hours to myself. I have ranted on as I am confused, lost and feel so alone .

Hi @Mtarfa

You've hit on a number things in your explanation that ring true with my experiences, especially the OCD type behaviour, which isn't OCD but dementia mimicks it. I also find it easier to take mum out and we seem to have better quality time when we do that, when we are at home things get harder. If you have a group your dad can go to for a day or even half a day take it. We have nothing here other than putting mum in a taxi when I am at work for a 15 mile trek which I think is unfair on her plus she wouldn't go. It does get to be a lonely experience because we become so engrossed in sorting out the person with dementia we forget to sort ourselves out. I am very lonely at times, even though I have friends who are distant and some good work colleagues, they can't be here with me dealing with this. But please know that now you're here on this forum you are not alone, there are lots of people on here who will read your posts and share their loneliness and how they cope. Of course it depends where you live as well, we live in rural Cheshire and there isn't alot here for either of us.