A Thankless task....Looking after dementia carers

I have thought long and hard about this post. I don't want to sound ungrateful or to moan. I have had a week off work, it's half term but my children are at an age where they don't surface until lunch, at the earliest. I decided I would try to do things with my mum. Previous readers of the blog will realise the situation. New readers here's a synopsis. Dad has stroke 11 years ago, 4 years ago started forgetting, 12 months ago diagnosed with advanced dementia. Mum looked after him. Psychotic breakdown ensues in March, he moves into full time care. I sit on the sidelines trying to support, shop, be full time administrator of their lives and now professional battler to get them what they deserve, are entitled to and need. Saturday, The week starts out well, I set out with mum to see dad but have to turn back, not feeling good and daren't take germs to home. I am confined to the sofa with that bug every one seems to have. Not one to be selfish I share with my family! Sunday we go to see dad. Mum seems very obsessed with everything going on in the home, all except my dad. Her fussing and flitting keeps her busy. She has always been active so this is her way of feeling useful, but he just keeps asking where's Betty? Every now and again flickers of his wicked sense of humour emerge. Monday crisis!!! Mum leaves the phone off the hook so her "friends" start ringing me and appear very judgemental that I haven't been to see her. I eventually get hold of her, one of her well meaning friends has been to see her and tell her her phone is off the hook. We have a laugh over her friends concerns, our motto is and always will be If they are calling us names they are leaving someone else alone. It never fails She agrees in true northern mum style to give me three rings if she is planning on going. Otherwise she will put the phone back on the hook when she next needs it. Since then, we have been shopping. Three hours in asda to spend £35. 30 mins in coop to buy milk. Yes she is lonely. But this has to stop. I am a hard daughter apparently. I have explained that unless she starts to go out more she may as well be in a home. Yes, I said I was a horrid daughter. This is a highly socialable lady, one who after four years of caring had a complete breakdown. But she has to go out. She does, but only with me, or one friend. The scooter from the Jenson Button move over blog remains static. But she has acquired three shades of nail polish to touch up a scuff!! Today we went to town, no not dancing in the street spending all our cash living the high life going to town. Actually went to town. She was very disorientated. It's worse than having a toddler without a safety rein. It's actually drains me as I am on high alert the whole time. Then we saw dad, he was great. Can't remember anything but looked really good. I now have to make sure I do not go the same way. Yes selfish. But I have seen what being a carer can do and I can't afford to go the same way as my mother. So I will continue to ring, take her out , and yet keep my own space and sanity. But for tomorrow, I am taking hr to the spa! I must be a glutton for punishment. But then again if she can see me she will be safe, and not worry.

How will you remember him?

As its dementia awareness week I thought I would try to put into words how I will remember my dad. For those who have read this blog before apologies if there is any repetition. He is the man who taught me to lay bricks, yes I can build a wall thanks to him. He took me to work from a young age and before I started high school I helped float a bakery floor and learned the importance of pegging out levels of a site. He also taught me I can do what ever I want. Yes, I had him under my thumb, like any daughter should! But if I wanted to do something he let me, or rather was probably convinced by his better half. It did me no harm. So long as I worked hard and earned my cash, how I spent, for spent read wasted it, was my business. If you can't go to school you can't play out. Both parents taught me this. But dad in particular came home with some gruesome injuries, screwdrivers in eye, missing finger tips, which is why when aged ten I sliced my thumb in two ( I still have scars) he ran it under the tap, put a plaster on it and sent me back to school. it's nowt! He never looked at me like I was a girl. He spent hours showing how to perfect dovetail joints, yet never complained when I needed a dressing area. I soon got over that. But I can still do an awesome dovetail joint. On holiday as I was the youngest I had to go on top of pool pyramids, but he was the first to make sure I came up for air, even on a five tier one. I was never allowed to be soft. He drove me to uni one term, as I blasted The Smiths.. Girlfriend in a Coma.... Out of the stereo... Oh yes, he upgraded the eight track. What the bloody hell???? As he hit a row of traffic cones. He almost fainted as my husband asked for my hand in marriage, then went to bed and never answered. That will go down in history. And a note to all bikers, don't rock up in full leather and ask a dad for his permission. He renovated my houses, looked after my kids, hand carved rocking horses, built housing estates, bakeries, supermarkets, and had a marriage most would kill for, and two great kids, four grand kids and more friends than you can shake a stick at. But most of all he is my dad and made me what I am today! Objectionable, strong with a wicked sense of humour.

Acceptance

A eventful two weeks indeed. Those who have read previously blogs may realise the situation, for those who don't a quick recap. He has stroke 10 plus years ago, recovers but needs full time assistance. She looks after him. He develops dementia 18 months ago, not early onset, full blown, memory span of goldfish, dementia. She gets ill, goes in hospital psychotic breakdown ensues. He is put in care. She says he will come home. Well mum had been slowly recovering from her breakdown, slowly may appear as normal,but really slowly. She is now living alone for the first time in 59 years. She has lost all confidence to the point she is reluctant to go out. I have encouraged independence . She bought a scooter, read the move over jenson button blog for the details of that. The scooter I fear will gather cobwebs and never get used. I asked this week if she had tried it. Her response I will go on it in my own time I will not be forced. And yet she stays sat in the house, no TV on , no radio just blankly sitting in a chair imagining problems, and feeling guilty at not being able to care for her husband. New ones this week include her neighbour cutting down her trees, he does but only the bits hanging over her fence, another neighbour having a window fitted to their garage to spy on her. really, it's at the back of your garage and unless you will be up to no good in the garden all they can see is the grass growing! But last week she went back into hospital. It was really weird. On the approach road she said where's Peter? He is my other half, who apparently left during the last hospital stay. He is at work, I replied. He said he would guide us in. Odd. Once in the waiting area she constantly asked where he was as she could hear him. He was the other side of Manchester. I filled the nurse in on the previous hospital stay and said she is now medicated and to reassure her. The day after she had her operation she slept a lot. I stayed away, visitors seem to make her worse and more paranoid. On the next day I rang to see if I could collect her. Come down and we will see, we may need a psyc consult. What's happened? She kept the night staff up looking for me in cupboards, bathrooms and any other door she could open. I went to get her quickly . She's home again, but not my mum. I took her shopping yesterday and it's worse than having a toddler. I am constantly looking whe she is. Stay here until I come back! is said a lot, as she has mobility problems and struggles walking, but forgets most things until you are four aisles past the item she needs. I asked her if she wanted to go see dad. Oh no, she said. I went yesterday he's having a ball in that place. All guilt forgot I think she has accepted he can't come home and is really happy in the home. Never goes out eh? Maybe I am being led a merry dance. Lets hope now the guilt is gone, she can get back to normal. Oh and look out village I may get her on the scooter yet!