[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
i don't know what to say - Carers UK Forum

i don't know what to say

Tell us a bit about yourself here.

I'm 44. I flirted in and out of jobs. I had just got back from travelling when at the end of 2005 I started caring for mum.

I.have always wanted children and was going to apply to adopt when personal things with me happened and mums' memory has gotten worse. Over the last 2 months I have been smacked in the face with the realisation children won'r be possible. And I feel bereft.

In the beginning it was easy looking after mum. I had a life.

I had 2 sisters. Both older. Both lived an hour away. One was more helpful than the other.

But things began to change when mum broke her ankle. For once the unhelpful sister did something useful - she got her hubby to bring a bed to us for downstairs, but then refused to take it back when mum was better. During the 6 months they both only came over twice.

One was ill, the other blames me saying I gave her the impression she wasn't wanted.

Things started to go downhill for mums' memory when tragically my sick sister died from cancer at the end of 2011=

Mum stopped reading and knitting. It was little things, sporadic. Then she couldn't remember what a broccoli was called. But I really.started to notice it when she began telling people she had been to countries I know she hasn't been to. My sister or I had been to them
Mum has seen the photos and heard the stories. I thought it was grief.

She was still going out on her mobility scooter until about October 2015 when the keys and battery charger went walkies. I made a huge mistake. Massive. I began to do the shopping. I should have driven her to the shops and let her go inside. When she did go out on her mobility scooter she had forgotten how to shop. She came back with cake and biccies and tins of dog food. Her dog eats chicken and rice.

It's been downhill ever since. Her memory goes overnight. The day before she went shopping she had cooled chicken and rice.

She then proceeded to put open cans of dog food in the fridge and human food cupboards. She would cook the dog food in our pans and didhrs, use our cutlery to serve it up and then wash it in the bowl using our scouring pad. I began to eat out.

She now uses the washing up bowl to wash her feet in with the scouring pad a no hand towel.

I have put a stop to the dog food debacle.

She can't always explain things properly.

I used to be able to go for a drive for a couple of hours to have a break. Then in August she started to come with me. Nor she reads all the road signs and on our return journey wants me to take earlier junctions.

Now I'm scared to leave her. Since December the police have been called twice.

First, I was late picking her up from Church. She takes a lot of pain meds. It was cold, and she had her walking stick and was walking around looking for me. But in places she knows I park my car. So she wasn't confused. She does struggle sometimes to answer questions, especially when she's surrounded by people asking questions. But if you put her in her mobility scooter she can get home.

Second time I arrived home to find the police there. She had got locked out and the neighbours had called the police. She's started to go outside to see if I'm coming or the slightest noise and she's outside having a nose.

If I take her out for a meal as soon as she's finished she wants to go home regardless of whether I have. She was crying the other evening because she felt the taxi should have arrived.

The saddest thing was when she came upstairs and asked me "Do you have s mother? Where is she?"

99% of the time she knows who I am.

For the past few months she's been waking me up at 2/3/4/5/6am just to say hello. And then proceeds to call me incessantly to get up. It doesn't happen every day. And when it does sometimes it starts at 8am if I'm lucky.

There are many times throughout the day where.she's fine. Bit it's just really noticeable when she's not.

She's started day care but she can only afford one day a week. She loves it, but bless her she can't remember much.

I want her to have an MRI.

I'd like her to go into a supported flat. She's too independent for a nursing home.
Oh dear Jean, so much of this sounds like my mum whose dementia is progressing in fits and starts. I don't think my mum is safe to leave any more either so can only get out when I have a care worker here with her- very expensive as her holding budget from the local authority is only just over £100 per week. It goes nowhere. Personal care needs are not catered for in their equation so I pay for her to have an aided shower once a week... and soon it will have to be more frequent as she is not coping with toileting well.

Mum's brain scan just told them she has vascular dementia so it is a diagnostic tool but I think they could have guessed that.

I am 67 and have no children (ovarian cancer) or siblings and am divorced. The situation in which you find yourself could go on for a long time so please try to carve out space for your own life and protect it, as too quickly you can find yourself imprisoned with many heavy responsibilities and a social life shrunken to nothing. There is not enough funding in social care to help us sadly.

Welcome to the Forum, Jean. I too cared for my mum with dementia (again no children and single). We use the term "helicopter relatives" here for those relatives who visit only very occasionally if at all, hover in offering useless advice and return to their lives, sadly all too common.

From what you say, I see no mention of the GP or Social Services. If you have not already done so, it may be worth taking mum to the GP to see if a diagnosis can be reached. With a dementia diagnosis that is the pathway to possibly drugs to slow down the speed of the decline, support and also no council tax. Also please contact Social Services for a Care Assessment for your mum, and a carers assessment for you. They too can point you in the direction of local support.

It may also be worth dropping a confidential email to Carers UK Adviceline to see whether you and mum are getting all the benefits you are entitled to. Extra income could then be spent on daycare or dementia sitters to give you a break. And a break you will need if you are going to care full-time.

I hope you find the Forum useful. Have a look around and drop in where you want to chat. There is normally someone around who understands ..

Take care, Anne x
I'm afraid that by this time next year mum's needs will be so intense that residential care becomes the only option. Horrible, I know. This would be a good time to start investigating what would be the best option, and this needs to start with mum's finances. Does she own her own home? If it is your home too, then under certain circumstances it's value may, or may not, be taken into consideration. It is vital that you talk to or email the Carers UK helpline as soon as possible to find out which would apply to you.
If mum is in rented property, can you stay there?
If mum is going to be council funded, then they will only pay for certain homes - so once you know where you stand with mum's assets, talk to the council about which homes they use.
If mum is "self funded" you have a bigger choice, but bigger fees. Some have day care centres, some have respite beds. The council should know.
Mum should be claiming Attendance Allowance and exemption from Council Tax - on the grounds of "severe mental impairment". Has she had a formal diagnosis from GP, Memory Clinic, or similar?