I hate it and I've only just started

(15 Posts)
nonamenopackdrill Sat 05-Mar-16 10:40:12

My first thread - I think I just need to vent. My mum's memory has been failing for a while. She was diagnosed with early dementia a year ago, but point blank refused to go any further with looking at support, meds, etc. A year on and the deterioriation has been quite pronounced. I have been taking her to various appointments for other medical issues, and get questioned on why she doesn't eat /drink better, get out, etc. I work full time, have kids; she lives independently and I do what I can. Clearly it isn't enough though and I need to step up more. I really bloody hate it though. And I know I am a bitch. Today she got out of the car and wandered off leaving the car unlocked and the door open - I had left her in the warm while I went into a shop to pick something up for her. She had never wandered before. I now realise I need to think of her as a toddler in that sense. My stress levels are at maximum (going through a difficult time at work, and keep getting palpitations).

This is just the start, and I am already struggling. Sorry for the self pitying mope.

A colleague mentioned Attendance Allowance, which I will look into. I think I also need to get Power of Attorney sorted while I can. But all of these things are an acknowledgement that there is a real problem, which is something that I have been trying not to recognise for a while.

How the bloody hell do other people cope?

OP’s posts: |
stayathomegardener Sat 05-Mar-16 11:57:31

You don't. You firefight.
DM is 6 hours drive away.
I have-
Power of Attorney.
Attendance allowance
Twice daily carers
Meals on wheels
Panic button
Falls monitor
Shopping delivered
Art classes booked
Weekly trips out
All bills sent here
I organise all house maintance too, blooming nightmare listed house.

Upshot is DM is very happy in her beloved home, told DD the other day she feels great, so young. DD asked how old? 45... She is 82! (I'm 47... feel about 90)

Stuff still goes wrong but 95% of the time everything works.
Bloody hard tho.

stayathomegardener Sat 05-Mar-16 12:01:14

And when I say things go wrong, I mean major wrong, hospital admissions for undiognosed conditions that then get resolved.
Fires that resulted in the cooker/ hob being disconnected.
Targeted by fraudsters losing over £1,000, cctv installed.

Did I mention it is a bloody nightmare!

nonamenopackdrill Sat 05-Mar-16 12:38:54

Thanks for responding stayathomegardener .

I think that getting her post delivered to my house may be a good idea as I need to stop her posting off random cheques. I go through it once a week, but that doesn't seem to stop confusing, and her hiding/dealing with post. I have actually been thinking about taking her cheque book/bank card off her so that she can't enter into financial transactions - one for after the POA I think.

Her latest thing is calling our workmen to repair things that don't need repairing. Mostly they have been kind, but I think we have been lucky.

My brother is in denial about it all, and just says she is getting a bit forgetful. Which is convenient as it means the burden of responsibility falls to me to get things done.

OP’s posts: |
stayathomegardener Sat 05-Mar-16 14:06:53

Yes get rid of the cheque book, far too easy to lose large amounts of money there. We also took away Mums access to her main account and move £50 a month into an account she has a card for - bank are also on alert for any requests for large withdrawals.
Yes to engaging people to carry out work! Everest double glazing quote for £50,000+ only got as far as having 4 small windows done thank goodness but that took some unpicking.
Frustrating about your brother, my sister was in denial too for a long time.
I had to make a concerted effort to push all the problems that were being created pre carers/support package back to her. Felt awful as it was Mum who suffered for a while but DS relented (she had to miss a friends wedding to settle Mum back in after a hospital stay, I did the week before and hospital visits and could not be away from home for longer)
We work really well together now and divide tasks.

QuerkyJo Sun 06-Mar-16 08:49:47

You are not self pitying, I would say you are being realistic. Many of us on here are aware of the hard road ahead for you. We have lots of experience gained as our parents suffer with dementia.

Trying to get help, making other family members acknowledge the problem and share the responsibility, all the time keeping your own life together. It is hard.

There is lots of advice on the Elderly Parents board and dementia boards. I have nearly 10 years of this, so if you need to pm me for a rant, a hand hold, or help, dont hesitate.

nonamenopackdrill Sun 06-Mar-16 09:56:14

Thanks for the support QuerkyJo.

I think I need to break it down and tackle things one step at a time so that I can actually achieve things, rather than feeling overwhelmed and defeated by it all.

OP’s posts: |


QuerkyJo Sun 06-Mar-16 10:55:15

I can absolutely remember that feeling of being overwhelmed.

It is the unpredicatability of people with dementia that is so frustrating.
I think we are so used to being in control, making decision, if we do this......this will happen. Also the reverse of now looking after a parent, who does not usually want or see the need for your help.

Relying on others is hard but please don't try to do everything yourself
Being firm with L As is a skill you will soon learn, as they naturally look to the family first.

JohnThomas69 Fri 11-Mar-16 04:38:16

Being youngest and the only one left at home in my 20s I ended up looking after my mum when the dementia took hold.
It never occurred to me to do otherwise and I'm glad I was there for her but trying to juggle a full time job and my mother's extreme mood swings almost broke me tbh.
Waking me at all hours when I had to be up at 5am, crying and then angry if I tried to sneak up for an hours sleep in the afternoon. Constant cursing and swearing and searching and throwing the contents of anything and everything.
I did it for about 3 years until it go too hard/intimacy demands were starting to surface. A line I would never have crossed and couldn't expect sisters to go back and forth all day.
She suffered from mini strokes and it was as a result of one of these where she had a spell in hospital that the consultant suggested full time care in a residential home. The change from being absolutely on the front line to a bit part player took a while to get used to, but I made sure I visited every other day. She never forgot I was her son and if I missed a visit she'd be asking me where I'd been.
She definitely relaxed into the care home environment and I think the constant hustle and bustle reassured her to a degree but I did get a sense that the realisation of her circumstances had set in and any fight she had left in her had been extinguished which was very sad to observe.
She passed away 9 years ago having endured approx 6 years of the illness at its worst. She was the best mum I could ever have wished for and I miss my evening visits, but I also feel that she endured more years than anyone ever should of this terrible illness.
Keep yourself open to full time care and don't put it off for longer than is necessary. If you make a decision on a home and are not happy with it remember the option to move them is there. Something we did for my mum.
Most of all try and take a step back when times are difficult. Shout from the rooftops that you need help. I had a carer come in twice a day and the senior psychiatric nurse from the local hospital made regular visits and turned out to be a godsend, ending up filling out forms she brought (I kept chucking them in drawers stating we didn't need financial help or extra care) and providing invaluable advice regarding services and entitlements we were due.
Assess your circumstances/health regularly and make sure you don't push yourself too hard. I was almost at breaking point and the irregular sleep was starting to really take its toll.
I honestly don't know how I'd have coped if I'd known in the early days what I know now, but have a great appreciation/admiration for those who choose the same path.
Good luck.

nonamenopackdrill Fri 11-Mar-16 20:47:43

Thank you for sharing JohnThomas69

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jugglingeverything Tue 15-Mar-16 11:45:01

It is a very hard road. My mum was diagnosed with vascular dementia just over a year ago and has gone downhill quickly since then. she's always struggled with physical disability but now we've gone to a whole new level. We've always had a bit of a love/hate relationship and I often feel I'm doing things under a sense of duty rather than love now which makes me feel like a bitch but its just not easy. There is help out there but it can be challenging to tap into it. Be OK if I wasn't juggling with being single mum, 3 kids and full time shift work. But you do what you can and grow a thick skin. I do often feel like other people feel I don't do enough but I try to remember who the professionals are and who are the NIMBYs!

Mum already had a team of carers due to her physical problems but it still came down to me to get referrals made when I suspected dementia. She gets financial support to keep her at home but if she goes into a home then that will go and I'm dreading the point when I have to sort out her flat. She's in a Macarthy stone development and the house manager is trying to get her removed because she is too much hassle.

I do often feel like we lurch from one crisis to the next. Life is a problem solving exercise. I already had power of autourney - just had to get it actioned at the bank. Started off just giving her a bit of cash but it just seemed to disappear so I just have to leave envelopes for hairdresser, cleaner, milkman etc now. A lot of it relies on trust! First we had a crisis with her TV. She just couldn't distinguish between sky remote, TV remote and phone. Getting rid of sky helped but then I discovered she had 6 insurance policies for the sky box she no longer had. Then I discovered she had taken out a full subscription again with sky when they phoned her and a full home insurance package too. Sky were pretty good in the end but I did have to push them to remove her from their lists. Cancelling things is not enough. Next came the magazine subscriptions. Tons of them. Had to go to paperless banking after that so she couldn't get hold of her bank details!

Latest problem is ambulance call outs. We had a spell last summer when she dialled 999 every night because she said her electric blanket was burning her (she doesn't have one!). She has a panic alarm but presses it all the time and careline always send an ambulance which drives me mad. She'll go to the loo, forget how to reverse out and buzz. They'll send an ambulance but by the time they get there she's watching TV again. Careline just won't talk to her though which is all she needs. She's also wakes in the night and calls them. I get messages saying they are sending an ambulance because she can't move. No shit! She needs a hoist to get out of bed! Looking into a sleeping tablet to get round this one.

Sorry this is turning into more of a rant. I guess I need to vent too. My point is that everytime I think we are at crisis point we manage to make some progress. It might be easier for me with her in a home but she'd have to loose her mobility scooter, her last bit of independence and she'd loose the carers and environment she knows so to me its important to keep her there as long as I can. Everyone is different though and you need to do what is right for you. You will feel judged by everyone but take a deep breath and take advice from the pros. The community matrons are good and there will probably be a local GP that specialises in dementia who be have some good ideas too. Above all remember you are human. You will get cross, tired and resentful. None of it is fair. Wallow a bit. Be kind to yourself and then plod on x

nonamenopackdrill Tue 15-Mar-16 21:22:19

Thanks for the response juggling I could have written the line 'We've always had a bit of a love/hate relationship and I often feel I'm doing things under a sense of duty rather than love now which makes me feel like a bitch but its just not easy.' I find myself speaking through gritted teeth more often than not, which I am not proud of.

I get phone calls from various places asking if I can pop in with her, and I have to explain that no I can't, I work full time, commute, have a family etc and so can't be there at the drop of a hat. I find myself wondering how common it is that people don't actually work so that they can be expected to 'pop in' on request?

OP’s posts: |
QuerkyJo Fri 18-Mar-16 17:59:30

You do have to develop a hard shell I think. I currently have my house phone unplugged because of the stress. I feel sick every time it rings.

I don't believe anyone on the elderly parents thread think you are a bitch. Most of us know what a strain it all puts on you. We are here supporting you in any way you need.

ThinkAboutItTomorrow Sat 19-Mar-16 08:45:49

I'm also going down this. I'm so scared of what is to come and my heart breaks a bit every day when I talk to her and hear how confused she is.

I feel like I'm losing her very slowly. She used to be so busy and on top of things. She was always joining stuff and would be the chair of the committee within a year. The PTA, the church, WI. Now she can't even remember to eat.

What do you do when they can't remember stuff? Do you tell them or let it go? My mum is forgetting stuff and weirdly remembering things that didn't happen. She's meant to be buying a carpet and can't remember that she went in and chose one. She is adamant they are confusing her with someone else. But then she is also claiming she has been to the shop and not talked to anyone twice this week. Which she can't have done because her car was in the garage. She gets really pissed off with me when I tell her she's wrong but I want her to know because otherwise she's just going to confuse the carpet shop. (They have been in touch with me about it after a series of confusing conversations with her.)

She was pretty much ok at Christmas and has just gone downhill so fast. The GP says it's not dementia because they did a scan in December after she had a fall and there was no sign. We have a referral to the memory clinic but not a date yet. It's likely to be May or June I reckon.

VulcanWoman Sat 19-Mar-16 09:00:15

As you've already said, sort out the benefits/ POA etc.
I'd advise you to get GP and Social Services involved. Don't run yourself into the ground, put things in place long before you get to that point, unlike myself.
If your mum was in her right mind she wouldn't want you to be burdened with this, so don't, just don't do it to yourself. Give yourself permission to look after your children and yourself and try not to be guilt ridden, I know easier said than done.
You don't have to carry on the way you are now. Best wishes.

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