Hi, I have never posted on a forum before but I need a place to vent. I have recently become a carer for three family members and I feel like my life has crumbled around me. My mum is 78 and she was really fit, active and healthy 6months ago. She was caring for my dad (also 78) who has a rare disease and is bedridden and at end stage of life. He was given 4 years to live 5yrs ago and he is still here but he has no quality of life and he just exists. He is also a very challenging character. My mum was also caring for my sister (55yrs old) who has Down syndrome and the mental ability of a 3year old. My sister also has mobility issues.
In September my mum was diagnosed with stage 4 metastatic breast cancer in her bones and she has dramatically deteriorated since then. Mid November I left my life at the other side of the country, my job, my partner and the home we bought together last year. My partner then ended our relationship at the start of December two weeks after I left. This was a real shock and the last thing I need to deal with right now. He had initially been the one to suggest I needed to move here temporarily.
I am now 38yrs old, paying my share of a mortgage on a home I can’t live in, sleeping in the living room of my parents house, caring for both of my parents and my sister and I have just started a very emotionally demanding job. I had wanted to start a family of my own soon and I feel my time is running out. I feel like I am trapped and no longer have a life of my own at all.
My mum is used to doing everything for everyone and she is really struggling after changing so much in such a short time. She keeps telling me I should not have moved here. She is trying to do things that she can’t do and then she keeps getting upset. She needs help but she doesn’t like me helping her. We always had a good relationship but now there is so much tension between us. She is crying all the time and saying that I’m snapping at her even when I’m not although I’m really struggling to be endlessly patient. I am conscious she doesn’t have much time left (not sure how long) and I don’t want us to be falling out all the time. Neither of us have a good relationship with my dad and he is very difficult to care for and very demanding. My sister is waiting to go into a care home but social services don’t know how long it’s going to take. She is now anxious as she doesn’t understand what’s happening and why my mum can’t care for her anymore. The tension in the house is unbearable. I look forward to having to go to the supermarket because I can have a cry in the car on the way.
I am scared because I don’t know how long I am going to be stuck in this situation and I’m finding it really difficult already. I feel guilty about not wanting to be here. It feels relentless. I don’t get any peace all day. I can’t wait until around 11pm each night when they are all in bed and I can finally have some peace and time to myself. As a child I always felt very responsible for everyone else and I helped care for my sister. I used to have nightmares about the four of us being on a sinking ship and me trying in vain to save them all. Struggling to save them as we all drowned. I feel like that nightmare has now become my reality! Sorry for the really long post. I just needed a place to let it all out.
Welcome to the forum.
I’m awake as I’ve been coughing, so thought I’d write immediately as you are in such a dreadful situation as my cup of tea is cooling. Sorry, but the quickest way of getting information is with questions. I’ve supported all four elderly parents and have a brain damaged son of 42 who lives in his own flat but is home for Christmas. I’ll be back later once the chaos of Christmas has calmed down!
Have you had a Carers Assessment from Social Services?
Parents and sister each had a Needs Assessment from Social Services?
Do you have Power of Attorney for each of them?
Your sister must move out asap!
Has anyone told you about NHS Continuing Healthcare? FREE care from the NHS for those with very serious health conditions?
Have your parents claimed Attendance Allowance?
Arranged funeral plans?
Thanks for your reply. I hope you managed to find some moments of peace today amongst the Christmas chaos. Your questions are helpful for giving me some direction. I didn’t know about carer’s assessment but I will ask about it. I know that my dad had a needs assessment but it was before my mum got really sick and she has a habit of telling people everything is fine and making things look better than they are. I will look at getting it redone and one for my mum too. My sisters social worker just seems very laid back about everything. I have asked him when she is likely to move out but he just says it takes time to do all the assessments. He is also off work now until 10th Jan. I will be chasing him up and being more pushy as soon as he returns. I haven’t got power of attorney yet but I was aware it was something I needed to look at. I will make it a priority too. I hadn’t heard of NHS continuing healthcare. Thanks for that. Yes parents are both getting attendance allowance. The Macmillan nurse sorted that. Funeral plans are difficult to think about but I know you are right and it needs to be looked at. Thanks for helping me work out more of an action plan. Lots to think about and organise but it’s good to feel like I am doing something proactive to deal with things.
Go to the LA website, search for Adult Services Complaints" and complain about the lack of urgency with regard to your sister. She has been disabled for over 50 years, for heavens sake! They should know everything about her and already have plans in place. Does she attend day services, have support to do things outside the home, or did mum bury her head in the sand about the fact she needed to plan for when she was unable to care? Until such time as your sister leaves home they need to either provide her with lots of care at home - my son has 7 hours a day - or arrange emergency respite where assessments can be done anyhow. Do NOT let them dump this on you. Similarly either Social Services or the NHS should be providing a lot of care for mum and dad. Getting dad washed, dressed, bathed, fed. Meals prepped for the evening etc. You cannot work and care for 3 people who are I’ll and disabled. Your role needs to be that of care Supervisor/Organiser, NOT hands on provider. Once your sister moves out at least you can have her room. I know mum wants to have just you, but she can’t. You are daughter, not slave, you need to work. They both get AA to pay for help. It’s time they started using it. Do they own or rent their house? Made wills? Make sure they haven’t left money directly to your sister as Social Services will take it for her care. It must be left in a discretionary trust. Consult a solicitor asap.
The rest of the family are all in bed now, I had an afternoon nap once we had dinner. No one had room for tea, as usual just a bit of cake. Christmas is the only day we stay in, we are in the New Forest with a large garden, so they are planning a bonfire tomorrow if it stops raining.
You need a place to off load that doesn’t include your family. Is just for you to speak on how you feel without feeling any guilt. There should be a carers group in your area.
Your sister is in the system and hopefully will be sorted out at some point. There are many Mencap homes I became proactive in finding my niece a place. And it was quicker than waiting for Social Services. You can contact Mencap or alternative provisions which are always open to meeting and talking to families.
You need respite which can be made by many different ways. An afternoon off and day to shop independently etc. Some Carer groups can help with proving such needed options. And can put you in contact or sign post you.
Unless you get your own support. It will become increasing more difficult for you. As if now isn’t any less difficult.
I would ask the macmillan nurses about continuing health care for your parents especially for your mum. The have a wealth of knowledge and information about what you can claim