Sorry but need to let go somewhere, my friends are out on the beach and here I am feeling older than my 62 years with tears flowing. I am at my wits end, my life has fallen apart and everywhere I turn there is problems and stress. I am feeling totally overwhelmed with worries. A month ago I was taking my Mum for a mile walk with her frame, feeding the squirrels and enjoying our chats. Then came the UTI, the dreaded word and she went into hospital just for one night. The care agency and I were told that she could walk 8 metres and a car had been booked to bring her home. Luckily a profile bed was delivered an hour earlier. I had to move some things to make way for her old bed in my old bedroom, still with my bed and some of my things in there. Another call from the hospital, she can’t walk, an ambulance will be bringing her home. She had to be carried to her bed and she couldn’t even stand up she was so weak. The care agency had no extra staff for a double up for personal care and I was asked to help. I have OCD regarding public toilets and can’t stand any forms of bodily fluid or doctors etc. just makes me feel sick, I try and avoid it at all costs and carry around anti bacterial wipes and gel. I don’t tell everyone about it because I can cope with it and have my rituals of not touching toilet doors etc but that is how it is. Strangely my Gt grandmother had the same thing. So to see my Mum now slurring her speech and lying there unable to even lift her head was a big shock and it took a lot to hold back the tears. She tried to kiss my hand and I cried. I cried all the way home. I was asked to go in every lunchtime which really was excrutiating for my back, with burning and tingling, my arms were shaking as I have no strength. I have hypothyroidism and I am under an endocrinologist and have lost all my muscle and walk like an old woman with a hunched back. I have osteo arthritis, ankylosing spondylosis in my upper back and neck and under a physio and chiropractor for a twisted pelvis and one leg longer than the other. I also had a heart attack 5 years ago due to stress as my husband had walked out a year earlier. My Dad died a year before that. Sorry for the long story… So I have been doing this care for a few weeks but I live 11 miles from Mum taking 30 mins drive, I have a dog, a son, daughter and 2 lodgers as I need the income to pay my mortgage. I also have a bit of income from a few flats but after their mortgages there is only enough to pay my home mortgage. So I am busy looking after the flats, keeping my home clean tidy, sorting out kid problems and doing shopping for Mum and being the link for doctors, physios, OT, etc etc. I am busy all the time and actually sit down to watch tv at 9pm exhausted. I haven’t had a holiday or break since 2011 when my Dad became ill.
I have a brother 5 years younger than me, he owns his own business and lives 5 mins from our Mum. His wife doesn’t work and stays at home and hasn’t seen Mum since Christmas, she is very aloof and doesn’t help out. My brother has been helping mornings and evenings on his way to and from work as he passes Mum’s road. Fine, no problems…until he started accusing
me of stealing from Mum. He has sole POA as my parents didn’t like my husband and didn’t want him getting any of their money but for some reason my brother thinks I wasn’t trustworthy. I will do anything for Mum and she has often said before her dementia was diagnosed that she wanted me to have anything I wanted. I didn’t take anything but after she was diagnosed my brother said nothing must go out of the house and he installed cameras in every room. Even though he says he is busy at work he is watching my every move. A few days ago I did shopping for Mum but found that he had already bought milk and eggs. I was standing in front of the fridge and put in the cheesecake and yoghurts and put the rest back in my bag as the carers throw away food at the best before date. I knew Mum had run out of tissues so I got a new box and put that and my bag in the hall. On the way upstairs to say goodbye I picked up the tissues and put them by her bed. I got a text message saying he has evidence I have been taking the fresh food from Mum and the tissues. He has been sending me abusive emails and text messages, telling the care agency lies about me saying I don’t work but don’t do much. I am daft, and stupid and other names that eat into my being. It was ok before we had to do the caring. I was asked to do two visits today and after my morning visit I am sitting here and my back is killing me, I don’t know how I am going to manage tonight. He has muscles, goes skiing, is 5 years younger than me and yes he does have a back problem which he tells everyone about but it seems he has told everyone that I am a compulsive liar so even the physio and OT don’t believe me. So after so many nasty texts to me and finding another when I got home I had to vent off to someone and forwarded his email to my best friend along with venting off about him and saying how I ‘Loathe Hate and Detest Him’. OMG I started getting horrid emails from him and I realised I had sent the message to him, both names begin with A and my mouse sometimes scrolls on its own. I am sure I put her name down. I was letting go of my feelings about him to her, I have no-one else to turn to and I was crying my eyes out. Now I can’t bear to look at his messages, they make me feel sick. My Mum agreed to pay me a sum a month to help out with the mortgage to cover fuel and expenses etc, I rely on this money and two years ago he started being abusive again and stopped the payments and I was taken to court for repossession as I couldn’t afford my mortgage and it was only because my son pleaded with him to start to pay me again that I am now on countdown and if I don’t pay the mortgage they don’t have to go to court for repossession. It cost me over £8000 in lost income, the Court of Protection became involved and for a year I had to support Mum on my own. He has now stopped the payment and I have to pay the mortgage in two days time. I have stress coming out of my ears, he has never shown any support or gratitude to me and as soon as my Dad died he got me to sign all sorts of documents, he changed into a narssisist. My Dad told his solicitor that he had a temper and I have heard him slam doors at my parents home. I am now getting the brunt of it and doing my best for my Mum. At least I have stopped crying now. Life can be so cruel. For the first time 2 days ago Mum looked at me and said ‘Who are you?’ My heart broke, my brother has broken my heart, my Dad broke my heart, my husband has broken my heart. I thank God for my two amazing, kind, gentle, generous, giving children and my Cockapoo without whom I couldn’t manage. My friend looked after her Mum with dementia to the end and told me that she spent her time crying on her stairs, we are in it together but without support and understanding from friends and family the journey is even harder…and on it goes
|I just got to the bit that said you had “ankylosing spondylitis” and that was enough.
YOU MUST NOT CARE FOR YOUR MUM.
My mum had DISH, Diffuse Ideopathic Spinal Hyperostosis - often misdiagnosed for AS.
You MUST look after yourself really carefully, especially with all the other problems too.
Mum should never have been discharged in the state she was in.
Has anyone mentioned NHS Continuing Healthcare to you?
I cheated … spotted the CHC / NHS Continuing Healthcare prompt :
Main thread :
What can I do when my brother has told everyone that I am a compulsive liar and not to believe me. I am just about to leave for another care session and my back is hurting already from this morning. I have looked up Ankylosing Spondylosis and see that there are further tests that should be done. i had an xray about 20 years ago and that is what was on the letter and the nurse told me that we all have it to an extent. I didn’t hear anything else after that but been back to the doctor many times with back and hip problems. I think I need to go back and ask for more testing. I have finally got physio for my hip which another physio said I need a replacement. All the doctor says is ‘But you have had it for years!’. Back again, another 22 miles, hour in the car. 
I have sent a copy to my brother, he is POA and Chief Narcissist! Very interesting about the discharge, she was in AandE overnight so wasn’t admitted to a ward. Perhaps this is the problem. She is comfy, says she is having lovely dreams and is eating and drinking and a grand 95. Being in the Land Army has helped, as we say ‘She’s a tough old bird!’ which makes her laugh. She has a happy disposition and loves to tell jokes with the carers.
Funnily, my own mum was also in the Land Army, I too said she was a Tough Old Bird.
On Monday, you must ring Social Services and say you CANNOT look after mum. Either she is readmitted to hospital or they provide emergency carer cover. You could also dial 999 and ask for an ambulance. They will either take her back to hospital or ring the Emergency Social Services cover. Sometimes, it’s the easiest way to get help!
Definitely ask to be referred back to an AS specialist. Advances in diagnostic surgery, scans, etc are now so much better than the options they used to have.
Lou
You don’t have to care for her. As your brother has stopped payments to you, you stop the work else you will end up working and stressing for no reward.
Just tell him you are too ill and let him sort everything out.
As he has the POA he has the legal responsibility.
You have done more than your fair share for Mum. She knows you lover her and she loves you, but she would be so sad to see you in this state.
Take a couple of weeks away from the situation, you are poorly and need the rest.
Look after yourself for a while
Xx
MrsA
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How old is mum?
If you are 62, then she is probably 80+, and in the last few years of life. I know it’s horrible to think about. I now have to manage without my parents, my in laws, my brother, my sister in law, and worst of all, my husband.
However much we think death is a stupid idea, it’s part of life none of us can avoid. What we all want is to be able to do all the things we used to be able to do, but that can’t happen either.
All we can do is walk alongside our loved ones in their journey through life, as best we can, and make sure they are getting all the help they NEED.
We can’#t do everything for one person without neglecting the others,counselling showed me how to set priorities. My son with LD couldn’t speak up for himself, so he came before my mum, who was physically disabled and could, for many years, direct the care she needed in her own home.
You should not do anything making your own health condition worse, so as far as mum is concerned you can MANAGE her care, but not provide ANY hands on care.
BALANCE all the demands on your time, making sure there is time for you to keep fit and well and look after your back.
As far as UTI’s are concerned, I’m coming to the conclusion that the elderly gradually become more susceptible to infections which, in a compromised state, the body can’t fight off. When my mum was very ill, I googled “Signs of Dying” (I am NOT saying your mum is dying) and found some interesting articles written by people from the hospice movement, explaining about how the body slowly shuts down. I strongly recommend you look at these, I know it’s difficult, but there is lots of information which will be useful from now on. Particularly good is the info about how much food and drink people can take in.
Thank you for your insights, Mum is 95 years. I shall take your advice. Thank you x
Just to update everyone. Mum has surprised everyone else apart from me, she walked to the commode yesterday getting herself up from the bed. She is eating well, watching Wimbledon from her new profile bed. The physio is surprised and thought that she would stay in that state, without me she would have been left in bed without anyone trying to get her better. I go over to support the carers still but Mum either goes on the commode or can roll herself over. She even did a sit up! I went to my endocrinologist and he has now referred me to a gynaecologist for hormone testing thinking I am very low. I am pleased someone has at last listened to me. I am hoping Mum will make it downstairs next week. She is a positive and happy soul and I am sure she can overcome this setback. Thank you all for your support and suggestions, they are much appreciated. x
Lou,
great to hear your Mum is improving - all credit to her indomitable spirit and your belief and support.
Now is time to focus on reducing your visits and recuperating yourself.
Melly1