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Elderly parents

Responsibility for Elderly Parents? Support thread right here!

997 replies

Needmoresleep · 01/09/2014 09:08

Several of us are on the same journey. Some more difficult than others, some longer than others, but none easy. Feel free to share tears, rants or laughter with others who will understand.

OP posts:
bigTillyMint · 18/07/2015 16:06

Sorry for you all with problems this week.

The integrated care team does indeed sound good. Is this just a thing in your area, CMOT?

CMOTDibbler · 18/07/2015 16:17

It seems like it is an initiative thats supposed to start all over the country, but their area is one of the ones to have got it going quickly. The blurb on the website says they are for anyone with severe disabilities over 18, and particularly the housebound as they bring everything to you, and will do dressing changes and so on.
I guess that they will be particularly targeted at high risk, frequent A&E flyers like my oldies - its a 24/7 service as well, so I'm hoping dad will call them when he's panicking about one of mums turns.

SugarPlumTree · 20/07/2015 05:25

That sounds excellent CMOT snd I really hope they deliver what they say they will. If they do that would take a lot of pressure off you.

Hadn"t heard anything about FIL until yesterday afternoon. His chest is apparently improving bit he is very confused.

I found a charity who provide hospice care at home over there and have given the link to DH. I think DH well aware that would probably be kinder to decide no active treatment but there is no way on earth a couple of the others would agree so we are just carrying and pretending nothing is happening. I sense a deep level of helplessness in DH again that he had when his Mum was ill towards the end.

twentyten · 20/07/2015 08:44

Morning all. Cmot the team sounds excellent- love the term a&e frequent flyers.
Spt- it must be so hard for you and your dh. Waiting on news and feeling helpless is really hard.
You must both be so ground down.
Saw db yesterday whose mil is recovering from a stroke and home after 6 months in hospital and his fil is struggling with various ailments- apparently when they managed to take them out for the first time in 6 months il's were bickering over who's disability trumped whose to sit in the front seat of the car.......BrewBrew To all.

Needmoresleep · 20/07/2015 09:38

SPT, our parents have made their own decisions. If they avoid consequences, or we can help them avoid consequences, all well and good. If chickens do come home to roost, we should not beat ourselves up, but instead simply do whatever we can to help.

Your father in law decided to live abroad. He decided to give POA to his neighbiour. He decided not to discuss his preferences with his family. All of these might have been decisions by default, but decisions none the less.

Assuming he has enjoyed his retirement in Spain, he might well make the same decisions again. Yes its tough now he is ill and you are so far away, but it would be tough in the UK as well. My mother is very comfortable in her sheltered housing and could plod on for years, slowing declining till she winds up bedridden in a foetal position. Living life, with only half an eye on consequences, may be wise after all.

I'm facing something similar. DM, who has always enjoyed amazing health, has a few symptoms which could be early signs of something more serious. The GP will run some more basic tests which might lead to a straightford and treatable diagnosis, or we face a decision about whether to put her forward for more invasive tests, which if it were something serious, could give the chance for early and effective, though probably not pleasant, treatment.

There are still a few bridges to cross, but the GP has flagged up that he probably wont recommend invasive testing. I don't have strong views, but see enough of my mother, and know how reduced she/her life already is, to want her to avoid the bed-ridden dementia end stage. (Her own mother was like this for three years.) The carer, who has formed a good bond and indeed picked up the fairly mild symptoms, believes all humans should have the right to treatment and the GP only wants to save money. My mother is failing to understand she may be ill, as she is not in pain, indeed pain seems to be her only concern. The priest has told me previously that my mother has had enough and indicated that I should not feel obliged to use all means to extend her life. My brother has suggested in the past that he wants my mother to have access to top quality private treatment when she needs it. However at that point he seemed to be in denial about how disabling her dementia was. I dont know if his views have changed or if he will share them with me. (I suspect it will be easier for him to have me to make a decision he would not want to make.)

If it proves to be something serious and life limiting, I will feel very guilty if I know she is ill because I opted for her not to have tests.

Its not necessarily easier if you do have control!

OP posts:
SugarPlumTree · 20/07/2015 12:32

Thank you both. I'm at it is what is is but feel sorry for DH. We did have a discussion on Saturday where we both said pretty much what you said about his choices NMS. It has emerged he bought current flat without MIL knowing, she wanted to come back. He was determined to remain there whatever it took. DH and I were saying it speaks volumes that none of the 4 of them show any sign of plane jumping. It's the logistics that always get to me a bit. You can guarantee it all goes wrong just when there are no available flights.

Very sorry to hear about your Mum NMS. I'be come to the conclusion of is all hard whatever the circumstances.

My Brother has his hands full, Urologist today, Dermatologist tomorrow.

CMOTDibbler · 23/07/2015 11:40

Any news SPT?

Just had the OT from the ILT on the phone. Mum isn't taking all her medication, or from the right part of the box. Can I get them to accept more care. How do I think they are managing.

She's seeing them later and will call me. The team leader will speak to their carer as I think she is the one most likely to get dad to accept more help.

SugarPlumTree · 23/07/2015 13:28

Oh no CMOT Sad it is good though that things are being picked up if they aren't working and it maybe your Dad will in time respond better to it coming from the Professionals. You can use them to hide behind.

Heard nothing from Spain so assume he is improving and still in hospital. My Mother has a pet piece of nylon string who she talks to in her mind then announces 'the string said' apparently plus is starting to slip into her native language more.

She's apparently having urodynamic testing on Saturday to get to the bottom of her incontinence which I can't get my head around as she had it before and it was quite invasive snd she hated it. I'm surprised they would take this approach with a not very mobile elderly lady with Dementia.

CMOTDibbler · 23/07/2015 13:38

I did try and make it clear that I did all I could for them, but that dad didn't always listen to me either (and that I was concerned about him coping and his mental health). I suggested a pill dispenser that their carer could refill and police, but they also need a nurse to tell them to reduce the medications which are out generally.

I don't understand the uro testing either - its horrid for anyone, and most of the solutions for anything treatable found are surgical or behavioral, so not suitable for her. But I'm sure they have their reasons.

SugarPlumTree · 23/07/2015 13:46

I'm hoping they will get the situation and take the strain off you once they've found their feet with your parents. Guss it needs a bit of settling in time for everyone.

That is exactly what I thought about the test. I suspect they are doing it as my Brother asked them to. I need to speak to him and ask how he sees the outcome of it.

drzeus · 24/07/2015 11:33

Can I join you? Sad

My DM (84) has Alzheimers and is in a nursing home. She had a stroke in May 2014 and has been in the NH since July 2014. My DF (89) moved in to the same NH in November 2014 as he could no longer cope with the family house. He was visiting every day and it was clearly too much for him. I posted a bit last year about the situation with DM following her stroke. DF initially was in the same room as DM, but couldn't cope with it. He is now in a separate room on the residential side of the NH.

There are so many issues going on at the same time.

I visited yesterday and had a meeting with the NH. Mum's weight has dropped to 45kg. At the beginning of June 2014 she was 69kg. Beginning of June 2015 - 49kg. Last Monday she was weighed - 45kg. Also she is getting aggressive with the carers when they try and help her. I don't know what to do to help. She isn't drinking enough either, so has continual UTIs. The NH are concerned and are trying various things to get her to eat a bit more. The doctor is aware too. Her decline is accelerating. Even in the last two weeks I can see a change.

DF isn't doing too well either. He has left the family home to my sister and I to clear. But still wants his possessions kept (in case he want them in the future). He was a hoarder too, so we've had a mammoth task sorting out things. Still very much in the middle of it all as we both work. I have two children as well so we only get the weekends really to crack on. I spent the two half terms with DS and DBIL with numerous trips to the tip and charity shops. Then we've had the occasion where he asks for a particular item. We have to go through boxes of "stuff" to find what he wants (if it hasn't been sent to charity).

They are self funding in the NH which is costing an arm and a leg. I am grateful that they have the funds in order to do this but I'm scared in case the money runs out. We have their family home still, however, DF hasn't given us permission to sell it. But he still assumes we will be "sorting everything out". I know that houses take time to sell. A difficult conversation is overdue.

Then we've got the POA issues for both DM and DF. Managed to get that kicked off in February (it was very marginal with mum, but the solicitor OK'ed it). Now I'm in the process of registering them with the various financial institutions, and also trying to deal with utility companies who won't talk to me as I'm not the account holder - you get the picture. DF doesn't do ringing companies as he gets confused/doesn't hear what is said, he passes that over to me.

In all of this I have my own family. Two boys 13 and 11 and DH. I honestly feel run ragged at the moment and stressed out by the situation with my parents and trying to sort out my own family. I'm suffering with bad headaches, stomach issues and my skin is a mess. Also totally menopausal. Don't get me wrong, I love my parents and wouldn't wish this situation on anyone. I dread the phone ringing and can't see a way through.

Just need a virtual handhold/cuppa. Brew

twentyten · 24/07/2015 14:09

Oh Dr Zeus I am so sorry. Here's a BrewBrewBrew and a hand to hold. I'm travelling so not easy to respond in detail but I wanted to say hello and welcome . It sounds awful. What many wise poster s say from experience is that it is vital to look after yourself to be any use to others. And your children are more important- house clearing can wait. Rant away- loads of wise ones here. Thanks

florentina1 · 24/07/2015 15:57

Sympathies here too. Hard when they are still at home with the constant phone calls, inability to get them to listen, or do things that you know are for their own good. Then the constant worry about them. Instead of it being a relief when they go into care, there are less of some problems and more of others.

Keep posting here, I have found loads of practical advice and hand holding.

My OH are both retired and it nearly broke us, I have no idea how people cope when they have a job and children to look after.

Needmoresleep · 24/07/2015 18:35

Poor you. A few random comments:

  1. Aggression and weight loss can be, as I understand normal symptoms of dementia progression.
  1. Honestly on the phone with utility companies I just lied and pretended to be my mum. Otherwise it started to become too complicated. I also typed out letters to various people giving a change of correspondence address and got her to sign.
  1. With banks I walked into branches with the original POA, passport driving license and proof of address, filled out the forms and got someone to check. Bank staff can take a copy of the POA and certify it. Much better than risk it getting lost. I also did the same with the tax office.
  1. With stuff I bought a number of large plastic stackable crates from B&Q. My mother has three full dinner services with soup tureen punch bowls and more. All very 1970s. China in one glass in another etc. Luckily there is a very large storage cupboard in her sheltered flat - now full! She can't get to individual items but knows they are there. And when the time comes I can load it all into a van and take it to a dealer or someone.
  1. With other stuff (and I came to hate stuff) you may find a local hospice shop collect. So just pile it up and give them a call when there is enough.

It's tough.

OP posts:
whataboutbob · 24/07/2015 19:33

Dr Zeus your post resonated as my Dad has AD, he certainly has displayed a lot of aggression and has lost several stones in weight. And he was a hoarder! In no particular order:
It might be worth keeping an eye on your mum's aggression levels and if they are quite difficult to manage do consider applying for continuing care, if she gets it the NHS will pay for all her care. Sad but true, challenging behaviour is one for he few ways people with dementia qualify for CHC.
I feel for your Dad and all his losses. On the one hand you do need to clear the place and it makes no sense to hang on to all this stuff. On the other it was his home and his belongings. Do you have any sense of what were the most important items to him? I have cleared about a skip's worth of stuff from Dad's house (mostly from his room), but kept things which meant the most to him, his academic papers, some books, photos. Maybe that's more for me, he wouldn't even know now if they went. I have to say it was liberating to toss all his hoarded junk in the bin.
re finances, as you I'm sure you know the house may have to be sold to pay for your parents' care, whether your Dad wants you to or not. SS can force a sale and as POA you will probably be required to administer it.
It really is hard, I also have a job and 2 kids so I understand. I had about 18 months of counselling to cope with it all and it really helped.

CMOTDibbler · 26/07/2015 21:52

I hope there is a special place in hell for the scammers who target the elderly Angry. Dad got caught by one last week who represented themselves as a Dr, gave the impression that they had access to his medical records, and then charged him over £100 for some tubes of herbal (possibly) cream. So he's got to go to the bank tomorrow to block further trnasactions, and I get to phone Trading Standards.

Needmoresleep · 27/07/2015 10:55

CMOT, since I have worn this particular T Shirt:

  1. Was the company Herbal life? If so Google. They have already booked their special place in hell many times over.
  1. Did he give his bank details? My mother did regularly to "insurance" providers operating just inside the law. If so it is really hard to stop Direct Debits. CAB advice was that you needed to first write formally to the companies concerned before you could take a complaint forward. I had a great letter, drafted with the help of a friend who works in Financial Regulation, which seemed to worry them as I got a number of phone calls and then each and every one stopped the multi year contracts. (I was happy with that though total losses were in the thousands she was committed to much much more.) I can PM a copy.
  1. Be warned that once on a "mugs list" the calls/mailshots keep coming. It looks as if charities have recently been shamed into not buying such lists, but plenty of others do. (Keep a look out for companies registered in France, but with mailing addresses in Scotland.) Get your dad to hand junk mail over to you. I started with emails, but found the only way to stop some was to phone and say my mum was dead and the continuing mail was causing me great distress. (I assumed they would then want to save the postage.)
  1. Be cautious with banks. Like all of us they are in a strange position. If a person has capacity they can be assumed to have the capacity to make poor decisions. So whilst the bank manager can be sympathetic to relatives, they can't do much. And if the bank then decides that a person is vulnerable, and going to them with this sort of problem could trigger this conclusion, they may want to close the accounts. Because I had POA I managed to negotiate a linked savings account that does not allow overdrafts or direct debits, with a PIN number meaningful to my mother, and which I can monitor/replenish on line. (To date its not been used as I also provide enough cash but useful to have it for emergencies. In my mother's case it is also locked in the medicine cabinet so she can't give those details over the phone.) In exchange I have made sure she does not have anything with her bank details on. That said losing her cheque book and thus her financial independence was the thing that seemed to hit my mother hardest. Luckily I had the POA and could blame the bank.

Your poor dad. He must be quite shaken. However does it mean a chance to suggest that there are some nasty people out there preying on the vulnerable and that he needs to let you help him more?

OP posts:
CMOTDibbler · 27/07/2015 11:31

Not Herbalife, but similar sort of thing. A search revealed that they have form for misrepresenting themselves.
He paid by debit card. He is pretty good with checking the account.

He's upset because he thought he was good at not getting scammed. He said it was with all the other calls he was getting last week from things being organised by the ILT and as they sounded so official.
I've suggested in the future he can let me know, and I'll check people out 'on the computer' first if he wants anything.

On the good front, not only did mum speak to the OT last week, but dad said she was talking about the convent that she was a nun at - which she's always refused to tell dad about !
And they have a respite carer booked - a nice lady from a farming family Smile

SugarPlumTree · 27/07/2015 13:45

That's really positive CMOT but am so angry on your Dad's behalf about the scammers AngryFlowers That was one thing I was lucky with , she never got scammed.

Well before lunch I had my Brother on the phone, he's going away for a week, my Mother isn't taking it well and refusing meds yet again, said she's going on hunger strike etc, anything to stop him going, . I've told him under no circumstances to go back or he will have no life for the rest of her life. He has actually worked his backside off with her for five weeks and one on one care 24 hours a day in place. We had the whole not artificially prolonging life conversation the other day as well.

Meanwhile DH has been contacted. FIL being discharged from hospital today. Neighbour thinks he has had a small stroke so looking for a care home, we doubt he has enough money to pay.

CMOTDibbler · 27/07/2015 15:56

Well, he's been to the bank and they are changing his account details and were really good about it - company were on a known list.
I phoned Action Fraud and opened a case with them, so its with the police now.

SPT, one might feel for your brother at this point. Is the neighbour going to deal with everything for FIL?

SugarPlumTree · 27/07/2015 17:23

That's good CMOT. I hope he feels a little better knowing he is far from the only one and great to hear the bank was helpful.

Never thought I would say this but I do feel sorry for my brother, he definitely didn't get the extent of her Dementia and how she can be. He's got stuck in and managed to deal with bras and incontinence pads which I didn't think he would.

I think neighbour dealing with everything re FIL but have yet to see DH to get the low down properly. Think at this point it might get messy. Timing about right as we have a holiday coming up. This will be Year 4 of either my Mother or FIL having issues just as we go.

twentyten · 27/07/2015 17:54

Hello all. Cmot- how tough having to deal with all this as well. More hassle and more time. Glad the bank were good but it must have shaken him.
Spt- I get what you say about your brother- and give him his due he has got stuck in. And your fil- please do not let this ruin your holiday. You must dread each phone call. BrewBrew To all.

SugarPlumTree · 27/07/2015 18:21

Thanks TT. Bit of Chinese whispers going on I think. He's gone home, we're not clear if he had has a stroke or whether neighbour just thinks he has.

She-s looking at NHs in case he deteriorates further. I found a charity who provide hospice care at home so suggested to DH he gives neighbour the details. Not going away until end of next week's so hope it will all be calm then but yes, do get twitchy when the phone goes at the moment.

SugarPlumTree · 28/07/2015 11:33

Oh dear, sounds like Spain not going well. Previous carer left so neighbour with him all the time since he came out yesterday abd us exhausted. She has got a new nurse starting today.

The email says he isn't good at eating and drinking, his kidneys aren't working well, he is shouting out day and night, often for his children . He needs help with everything after his small stroke.

If he gets worse neighbour will find a care home. The hospice charity don't go down that far. What a ££=%€£¥ mess.

twentyten · 31/07/2015 17:31

Spt hope there has been better news. Hope nothing disturbs your holiday- you deserve a good break!

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