The days when it drives you crazy! #dementia

Today, I’m going to explain some frustrations about looking after vulnerable elderly family members. Here they are:

  • Masses of frustrating administrivia.
  • The whole thing is a monumental time suck. You’ll find yourself wondering how the fuck they ran their lives before you and the care team came along to do it for them.
  • If you are going to allow the vulnerable person any independence, there will be slip ups. You will not believe how comprehensively they can stuff things up and you will have to do a lot of gatekeeping and/or clearing up.
  • Things will also stuff up randomly with monotonous regularity.
  • You will need to remember a lot of things for them.
  • Keeping them social and independent may involve covert surveillance from the wings, so to speak, so you can fix any bog ups quietly in the background, or at the least, see them coming. That may feel like spying or going behind their back. It isn’t. You’re just supporting them so they can be free for as long as possible. Hold onto that when it gets tough, my lovelies. Because …
  • The gift, or possibly the illusion, that they are running their own affairs (even when they aren’t) is the best thing you can give them. Aim to let the person have as much independence as is humanely possible, for as long as possible because however vulnerable they may be, they are not children, and allowing them to take responsibility for things is great for their confidence if they are supported the right way.
  • You will be amazed how crass people can be when presented with a dementia sufferer.
  • You will be amazed how lovely people can be when presented with a dementia sufferer.
  • There may be times when you feel trapped and cornered by the crushing weight of the responsibility and will wish that you could just run away and never return.
  • Sometimes you’ll wonder if they wouldn’t be better off dead. It doesn’t matter how ableist that is, it’s going to happen especially if one of them has told you, repeatedly, that  they hope they will die, ‘before I lose my marbles. I can handle pain, but I don’t think I could bear that, or knowing how awful it will be for you.’

In short you will have many thoughts that may not be pleasant but try not to beat yourself up because I’d guarantee that most of them are perfectly natural. You have to accept that your negative feelings are as natural as the positive ones. You have to accept yourself and look after yourself as well as them. Because if you go down, everything does!

When it comes to the time, you won’t mind putting the time in, and actually, most days, you’ll feel that it’s an honour. But on other occasions you may be roundly cursing your loved ones, especially if you have to drop everything and sort out whatever mess they’ve got themselves into. It’s nothing to be upset about when that happens so long as you don’t do it in front of them, because you’re human, and there will be times when it and they drive you buggy, no matter how much you love them.

Case in point, this week. It’s has been a bit hectic. Mum has reached the stage when we should really be activating the lasting power of attorney over her finances as well as Dad’s but if we do that, she can’t have a cheque book or bank card and neither can I. Running someone’s day to day finances and shopping needs from over 100 miles away isn’t going to be easy if none of them have access to a cash point and Mum can’t pay for anything by cheque either.

Sure, we can do it, but it will involve transferring hundreds of pounds to my own bank account every week and getting them out, putting them in an envelope and taking them down to my parents’ place. To be honest, I don’t fancy walking about with £500 plus on board, even in my quiet market town. Then, we have to hide the cash at Mum and Dad’s. We can put it in the safe but their having all that cash sloshing about is still not a prospect I relish.

Also even if I did it, what happens when I go away on holiday?

God bless my Mum, she managed to spend nearly £300 on some manure the other day. It’s excellent stuff, but she didn’t really need 36 bags. She used to, because she used to use a lot of it and would pass it on to friends. But not anymore. After that, and other scares, and a brief discussion with the carers we decided we’d hide the cheque book and card in the safe. Needless to say, when I looked in there, I found a bunch of cash I’d put in for emergencies while I was away on holiday a year ago – this was at a point where we were trying to have me bring cash each week and it wasn’t working. Obviously, there were four old tenners, so I had to put the new ones from my wallet in and take the others home where I could go into ‘any bank’ to swap them.

When I got home after three and a half hours of joy round the M25, I rang the fellow who sold her the manure. He wasn’t there so I left a message.

He didn’t call back until the next day and was extremely understanding but couldn’t really do much more than give us a discount and promise not to call again next year. I’ve had at least three bags of his manure, via Mum, so I do know he is legit but it was a pity. He also rang me just as McMini and I were leaving the house and it took us half an hour to sort it out. Half an hour that I didn’t really have.

Having agreed that Mum and Dad would have to keep the manure, but that he’d tear up cheque and I would pay a reduced sum by BACS, the next day, McOther then pointed out that I should wait to pay him until he’d sent the cheque back. Or stop it and then pay him. So then I had to stop the cheque.

However, HSBC’s Indian call centre came up trumps here. They still can’t pronounce the name McGuire but they are now more intuitive. Today I spoke to a lady who stopped the cheque for me and then, when I explained why I was stopping it, she waived the fee. Last time, when I was checking that there wasn’t a standing order pending for an insurance policy on her white goods that Mum had bought and I’d cancelled, the guy put a note on that no standing order should be approved without asking me. A stark contrast to the bastards at NatWest who would only change Mum’s old tenners if I had an account with them. Yes, after the thirty minute delay of the call with the manure man, it took us another fifteen to find a bank in the centre of town who’d swap the stupid tenners. Thank heavens there’s a Santander, where, ironically, I have an account but the teller swapped it all over without even asking if I do.

So the moral of this story appears to be don’t bank with NatWest, they’re a bunch of cAROOOGAHts.

It looks as if the suckers list Mum and Dad are on has just changed hands again and the ‘call blocker’ bastards are phoning every day, along with people ringing to say that the TV/Washing Machine/insert white goods here ‘insurance’ policy is due when there isn’t one. The former are scamming bastards out to rip off the vulnerable. The latter are selling worthless, overpriced services by cold calling people who are on the Telephone Preference Service (which is punishable by a £5k fine) but they are at least legitimate companies with websites and directors registered at Companies House even if their corporate ethics are in a fucking mess.

All of them call themselves something generic which is searched for lots on Google; Home Insurance Services or Call Technology Services, Home Services Limited or the like, things that will ensure any internet search for a record of their existence is buried under pages and pages of results. The other trouble is, if you are kind of person who purchases a suckers list in the first place, you’re not going to worry about selling it on with records that are duff when you’re done. As a result, every three months or so, Mum and Dad get a massive surge of these scam calls and then, as the shit-heads realise there are gatekeepers, the calls fall away until the list is sold on again.

Bastards.

However, I have a plan for the next call blocker selling weasel who phones when I’m at my parents. It’s going to be a gas! I’ll let you know how it goes.

I have a cunning plan … hnur, hnur, hnurrrrr.

 

 

 

 

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12 Comments

Filed under General Wittering

12 responses to “The days when it drives you crazy! #dementia

  1. We’re getting to ready to move ourselves to the old folk’s home (CCRC continuing care retirement community), where we will have built in care on a lower floor when we need it, so our kids don’t have to do what you’re doing.

    We hope it’s a long time before we need the next level, but once we’re settled I’m going to make sure we both know everything, and that the kids are kept up to date. It will happen some day, and I’m already quite disabled by ME and back problems, so it won’t be much fun, but I hope we’re able to not have people calling to sell us fraudulent services, etc.

    They say you adjust better if you move in while you still have some flexibility.

    • On the moving early front, yes, I think you’re right. My parents always meant to move to a smaller house that they could cope with but then when the time came, Dad had dementia and Mum felt that it was best to keep him in surroundings which he knew. It was the right decision for them, but their care team is wonderful. I think no matter how much you plan, your kids will still have to do stuff it there comes a point where they have to make the decisions for you. The point is you have done what you can. Likewise, my parents put a lot of stuff in place in 2004, which was, I suspect, the point where they both realised that Dad was beginning to get Alzheimer’s. A lot of what takes the time, for me, is making decisions. Usually Mum helps but she’s not always able to address a situation, or it’s too stressful for her, at which point I have to step in and try to make the decision she would have made if she had the energy and stamina to sort it for herself.

      On Saturday, 28 July 2018, M T McGuire Authorholic wrote:

      >

      • But care teams are a huge commitment – and the problems are yours. Arranging that here, long distance because none of our kids live in the same state, would be impossible. I’m amazed at what you do, living several hours away.

        Our house here, with five levels and four flights of stairs, has been a disaster for me for years now. My husband doesn’t even seem to notice how often I crawl up on hands and knees from one level to another – but he fetches things from the basement any time I ask. I don’t want him ‘taking care’ of me personally or with help; he doesn’t have the caretaker gene. And I can’t do much for him, when I can’t pick up more than about 5 pounds, and can’t carry that, and can’t even stand for a whole minute.

        We’re going to be almost the youngest there – and I can’t wait. When we’re in the stage of needing care, it will be right there. In the same building – and the healthy one can come have lunch without even getting wet or cold. We visited assisted living and nursing home, and would have no trouble living there.

        It’s too bad your folks didn’t move themselves while they could still adjust; neither did my husband’s parents. And the results were two-fold: my SIL worked herself to the bone supervising their ‘care’ at home (they never actually got anyone in until after MIL died and SIL finally got her dad’s permission and sold his two houses); and my FIL left us money he should have spent making life easier for MIL, and then himself. They looked at a CCRC – and didn’t do it.

        I feel guilty using his money to make our transition easier, but we would have done it anyway, and I WISH he had spent it all on them. The end of their lives should have been much, much better.

      • Ah but you are moving. And yes, I think you’ve done the right thing. I was talking to my Mum the other day and one issue was that my bro and I live 300 miles from one another, across the country. If they moved they were going to move somewhere nearer one of us but they couldn’t agree on which of us they wanted to be near to so they stayed put. Then, by the time they realised they were going to survive into sufficient decrepitude to need to move somewhere smaller Dad had dementia and they were advised to stay put.

        Personally, having spoken to a friend whose parents were close by, I’m beginning to think that being further away may be more of a mercy than it appears. It ensures that rather than popping in every day and ending up spending about four hours fixing, finding or generally sorting things, it only happens once a week and the stuff I sort out by phone is not as much of a challenge. So although there’s a lot on I do get to have a life of sorts. The challenge I face is more about time management, or managing my emotions and my morale so it doesn’t effect everything. That’s easier in a way because it’s me managing myself rather than trying to manage others.

        It isn’t ideal but it’s definitely the right thing for Mum and Dad now. They are as happy as they can be. When my time comes, I’ll be looking at something similar to you, although there isn’t as much opportunity to do it in the UK.

        Cheers

        MTM

      • But you’ve written before about how good your carers are, and your mother is still herself, even if she has much less energy, so the situation is still tenable – but maybe will have problems in the future. You can hope that staying in their house has been good for both of them, even with problems.

        We have almost NO social life here, because leaving the house is so hard for me. Where we’re going, social access to other grownups is easy: most people have dinner there daily, and the staff and custom support eating with new people or old friends rather than just staying by yourselves. Plus the pool and classes will make what’s so hard for me here – getting there and back – much easier for me.

        And we’ll be moving in with both of us in relatively good shape, so can form friendships before we need to rely on them. Here, I can’t – the one neighbor who was a close friend moved to Florida years ago!

        So we’ll be ‘home’ there before the difficult things start popping up, and essentially stay home, even in assisted living or nursing home, as they’re in the same building.

        I’m doing this early because of the disabilities, but we’ve had no need to maintain a home for children several years ago: they almost never come here.

        I preach that the move needs to be done BEFORE the crises of life come along – if you can afford it. After – or during – you have very few good choices.

      • Absolutely. I am sure you’re right. I wish my folks had done that.

      • We SHOULD have moved three years ago.

  2. Sending hugs and all the support I can give you. Empty words, maybe, but I could come and pick up some bags of manure if you’re desperate. 🙂

  3. Diana

    I agree that you are doing it right — in terms of the number of visits you make, and the decisions you are making. You are doing amazing things for your parents, and I hope you will never try to second guess yourself, and think all those “if only…”s and “what if I…”s. You need time for yourself and your family — especially considering distance, and the numbers of things you have to deal with even from that distance.

    With Mom’s bank accounts we set limits to how much she could withdraw — for a few reasons. She was okay with that. There is no easy answer — because no matter what you do, there will be exceptions and risk. But you seem to be handling things well.

    And Alicia, I hope you LOVE your new place even more than you think you will. May parents were militantly independent — which was both a blessing and not. May your move and your settling in be stress-free and simple.

    • Thank you and so true about the what ifs. I am a great believer that you have to be all square. If I popped off tomorrow is there anything I wish I could change? If the answer to that question is ever ‘yes’ I change it. In the end you can only do what you can do, it may be more or less than you expected when you thought over the possibility that this might happen, but as long as you are OK with that, and happy that you are doing what you can, you have to let the rest go. I have become incredibly pragmatic since all this started. That’s probably one of the key things I’m learning.

      Cheers

      MTM

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