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Am I selfish? - Carers UK Forum

Am I selfish?

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Hi, I'm new to the forum but have read many posts over the past few months for guidance, mainly at night during mum's wandering. A little bit of background from me. After many years of 'strange' behaviour mum has been diagnosed with mixed dementia, it was a relief to know what was wrong with her although she has not accepted the situation, which I can understand and was expecting. If ever I refer to her memory it's a full scale showdown so I avoid it as much as possible but I'm at the stage where I'm frightened to have a conversation with her. I had to take over her bills and shop for her as she kept forgetting to pay them and had a fear of going out (she had a bad fall 2 yrs ago). I also do her housework etc. I have tried to get her to do things with me just so I don't seem to be taking over but when she says "I can do that" she'll stand there looking at it so eventually I have to do it. She has always been fiercely independent, mum & dad split up when we were small and she has been on her own since then. She looked after her mum when my granddad died (30 yrs previous) until her death aged 98, I shared nan's care for the last 2 yrs as mum was getting worn out. Up until a few months ago I was on my own with this but after a few worried phone calls to my brother, who phoned her every night but never saw her, he is now on board and stays with her on a Saturday evening and goes home Sunday evening, he lives on his own and doesn't have a family. I stay with her on a Mon, Tues & Wed (I work in the area still) and visit on Fridays. My other brother says he can't cope with it emotionally so does absolutely nothing! I used to live round the corner from mum but have moved and now it takes me nearly 2 hrs to get there. We tried disparately to get her to move nearer in a sheltered accommodation to no avail.
My problem is, is that when I'm not there she phones me constantly, day and night. She gets very frustrated with everything and ends up shouting down the phone at me. I have tried to explain situations but she doesn't 'get it'. Many times I've been in tears, I feel like I'm in an abusive relationship. When I'm with her I'm frightened to speak, she'll either say "Yes of course, you're always right" if I don't say anything I'm told off for that. She hangs up on me, tells me off for not answering the phone when I'm working ( I work in a school) but she won't use any other phone number. When she phones me up asking about my brother and I can't provide her with the 'answer' she wants, I get told off but if I suggest she phones him she says why should I? Her last phone bill had 4 pages of calls, all my number. Even my grandchildren, when my mobile rings say, "I bet it's nanny **** She also has five cats (a stray that had 4 kittens) which are now my problem so I have to look after them as well. She doesn't like to let them out in case something happens to them especially in the dark as they can't see where they are going! Last week she phoned me to say the neighbour had kidnapped one, I wished!! but then phoned to say he'd bought it back. It's a battle of wills I let them out she gets them back in. I have lost count of the number of times I've had to clean up after them. Unfortunately the whole house smells because when they were kittens she refused to have a litter tray!! I had to tell my children to not visit as they had babies which meant we couldn't let them on the floor or furniture. When I stay I have to hide my bedding in case the cats mess on it. I've had to fumigate the house twice due to fleas and if that's not bad enough she phones me and tell me "To sort my cats out she's had enough of seeing to them" and tells me off again.
I have now got to the stage where I feel that she doesn't like me, I annoy her, when I leave she barely says goodbye, yet when my brother phones she ends it with "love you loads" I don't resent this or him and he knows she's like it but it is getting me down to the point where I don't think I actually like her any more. I have always willingly helped her and never thought I'd say this but I feel that I see her out of duty and not love. I resent the time she takes from me and this makes me feel guilty and annoyed. My poor hubby is so good he's always been there for her too but we are doing up our new house and I always seem to be leaving him to it. We have had builders in since beginning of December my house looks like a building sight and are currently camped in the small bedroom although it's what we want to do it is another factor to my stress. My emotions are sky high!!

I'm not sure at what stage we need to get help for mum or me, our saving grace is that mum doesn't go out so we know she won't wander but with everything else it's a nightmare. I hadn't spoken to my brother for various reasons for at least 5 yrs but now we speak nearly every night!! I feel torn I'm 55 have a new house that I want to get my teeth into. We moved to be nearer our grandchildren. We both went part time, we had such visions of doing things and yet I always seem to be at mum's. I know that mum's behaviour is because of the illness but what upsets me is how she can be horrible to me but nice to others? Again I know that the main carer gets it all but I'm sick of walking to the bus stop in tears and phoning hubby saying "I can't do this" I love my mum dearly we have always had a close relationship and I hate the fact that this illness has robbed me of her, it took me a long time to come to terms with the fact that she was 'gone'. Sometimes she's 'back' but it never lasts long. My mother in law is in a home for similar reasons and when we visit I always think I can't let this happen to her, she would hate it, but I'm not sure how much longer I can go on. The thought of carers terrifies me because of mum's reaction. I know I have the backing of my brother but ultimately it's me that will have to get social services involved and this scares the pants off of me!!! I feel like I'm living a nightmare with no light at the end of the tunnel.

Sorry for waffling, did I say a little bit of background? I think this must be the longest post you have had.
Welcome to the forum. Start by asking Social Services to do a Carers Assessment for you, so you can talk things through. Sadly, it sounds like you are very near the end of the road as far as caring is concerned, because mum's needs are increasing rapidly and she no longer sees things as they really are, especially regarding cleanliness and hygiene. When did the GP or District Nurse last visit to see the state of her home? Has mum had a visit from a Community Psychiatric Nurse? Can I ask what mum's financial situation is? If she owns her own house then this might have to be sold to pay for residential care. If she has over £23,000 approximately then she would be classed by Social Services as "self funding".
Hello Sarah and welcome to the forum.

You ask
I'm not sure at what stage we need to get help for mum or me
, the answer to that one is now. You could start by contacting your local branch of the Alzheimer's Society (they advise on all types of dementia not just Alzheimer's) and arrange to speak to one of their support workers about support, help and services in your area. They will 'hold your hand' through the process of deciding what you want to happen next - care workers visiting regularly or a move into a care home - but something needs to happen otherwise you are just going to make yourself ill with the stress and then you won't be any good to anyone !
https://www.alzheimers.org.uk/

The situation with continual telephone calls is one we hear a lot here - my own Mum (Alzheimers) used to phone me numerous times day and night ! Even after I moved in with her I would find her telephoning my (unoccupied) flat to ask where I was. Putting the answerphone on and only returning 'urgent' calls is one way that a lot of people get round the problem.

My Mum did move into residential care eventually and it was the best thing to happen for both of us - we were able to,once again, have that important Mother/Daughter relationship whilst someone else took care of the day to day stuff of caring.
Thank you for your replies, I think that is the only option left for me although inside I'm still fighting it! My head says one thing and my heart another but a carers assessment needs to be done. Mum saw the nurse last week, who we know well from Nan's care, for a check up she was declared fit and well which is great at least she's healthy in body. As for the the state of the house I see to that, I must admit I do find things in the most surprising places, all put there by somebody else of course!
As for the Alzheimer's society, I have been on their website, I will definitely ring them I'm also going to a support group this week and hope to gain some advice from them.
Thank you again xx
Sarah, my mum was so physically frail that she spent the last year of her life in a nursing home, after 6 months in hospital. It wasn't what either of us wanted, but it was what mum needed. I'd already supported my late husband's parents and my dad when they were ill, but making all the arrangements for mum, and then sorting out her cluttered home afterwards, was definitely the most difficult thing I ever had to do.
It will be a lot easier if you and your husband sit down together and make a plan of action, perhaps with a goal of mum being settled in residential within the next 12 months, or whenever you feel would be realistic.
Then make a list of what you need to do to make this achievable.
I can understand your desperation to get cracking on your new home, but perhaps set realistic goals for this too? (Our cottage was classed as uninhabitable when we bought it and has been extended a few times since).