Becoming my Mum's Carer...

[HillyBilly]

Today was Mum's first full day at the day care centre. I didn't mention anything, simply got her up, breakfasted, dressed and out the door before she knew what was happening. As she was getting in the car she asked when her hip would be better enough to ditch the walking frame. I said that's what her "exercise classes" were for. Got to day care centre, announced to manager when she opened the door "Here's Mum for her exercise class to help her hip". Bless Linda, the manager. She joined in, "Yes, we'll soon have you more mobile" with a big smile to me.

So I had nearly 5 whole hours "to myself". What did I do? Laundry, cleaning, dug up some potatoes, walked the dog, spent nearly an hour on the phone to Mum's bank sorting out a problem.

An hour's round trip to bring Mum home. When I got there she was enjoying a music session with a lady playing the accordian. Stopped off at an antiques place for Mum to have a look in. She said on the way home, "I do like it when you come to pick me up from (name of old CH) because otherwise I think I'm going to have to stay there". Bless.

She sat out in the sun in the garden feeding blackberries to the chickens, had a go at a crossword, polished off dinner and is now in bed snoring. With her canine minder.

Really struggling with the incontinence (and resulting laundry) but PHN here tomorrow morning.

 

[LadyA]

Woo-hoo! Sounds like a good day!

 

[Amy in the US]

Hi, HB, and nice to see your update. I think you're doing an amazing job and am very impressed. Seriously.

You get another gold medal for going with the flow on the "here's Mum for her exercises" transition to day care. Well done, that's two golds for Team HillyBilly so far!

Please forgive me if I say something stupid here, as I'm ignorant of how your system operates, and you may already have this covered, as you say the PHN is coming tomorrow. (Personal health nurse? Public health nurse?) I've been thinking and wanted to suggest that you ask for a consult/visit with the local Incontinence Nurse, if that's a service in your area. I wonder if they could make some suggestions about diet, exercise, and routine (and possibly medications) that could help with toileting your mum. It may be a vain hope and it may not be something you have access to, but I figured it couldn't hurt to mention it. I saw a similar discussion on another thread here on TP not too long ago and remembered your situation.

It also couldn't hurt to discuss this with the staff at the day care centre as they may well have some suggestions/ideas for you.

I don't think there's anything wrong with "modified rules" Scrabble. Your mother may enjoy just handling and rearranging the tiles. There is a regular here on TP, Beate, whose husband enjoys fiddling with a pack of playing cards-he sorts them and lays them out on the table and so forth. My mother can't really read any longer, but still enjoys sitting in her comfy sofa with a snack and a book and her throw blanket, I think because it's familiar and comforting to her. So if your mother liked Scrabble then bring on the tiles! (You might have a look at charity shops or car boot sales or jumble sales or the like, for inexpensive used Scrabble games, if you need additional tiles at some point.)

No offense meant on the television, by the way. I lived without a TV or a computer at home for four years, and spent another several years (as a student) either also without a TV, or with one, but never watched it (too busy being a student). Many people thought I was nuts for not having a television but I never missed it!

I hear both here on TP and in my support groups that many PWD enjoy nature type shows. I even recall someone here on TP who found both bird videos, and some sort of bird feeder webcam, on the Internet for her mother who loved to watch the birds. She also got some of those feeders that attach directly on the outside of your windows (her mother was bedbound at that point). A feeder to watch might be nice, for winter days when it's too cold to be outside for very long, although of course the chickens must be tended no matter the weather!

Hope the appointment tomorrow goes well. How are you sleeping?

 

[HillyBilly]

Hi LadyA and Amy both. I do appreciate you popping in - I do know you're both dealing with your own life issues too x

The PHN in Ireland is the Public Health Nurse and also our "incontinence nurse". She's due at 10.30 today. The day care centre staff advised me that the pull ups aren't really meant to be able to deal with the level of incontinence that Mum has and that pads would be better. (We're getting though 6 or 7 pull ups per day). They suggested putting a pad inside the pull up and did that for Mum while she was there. But now Mum's confused and removing the whole lot each time and then putting a pad alone inside her trousers with no pull up or even knickers

The thing is, the pull ups work well - in that there are no leaks (hence minimising soiled clothing, bedding and also preventing that smell. I am trying to prevent that smell at all costs. (You know the one - it seems to pervade the person, clothing, bedding, room, carpets, furniture...it was the smell of the CH and Mum and her belongings when she arrived) But even now it's creeping into her room. I'm worried that a pad system alone is going to leak. I really don't care how much it costs if it avoids the smell of wee and the soiled clothes.

A disturbed night here - Mum up at 4.15 to go to the loo, then calling for the dog (who had left her room because he himself also wanted to go out for a wee), so up to deal with that. I went back to bed but couldn't sleep. Then up again at 6.30 when she was up for the loo and banging about. Mum not happy - wanted "to go home" because I was asking her to go back to bed.

Didn't bother going back to bed myself. Made a cup of tea. Tired and tetchy. We shall see how today pans out...

 

[LadyA]

The PHN is also the door to a host of other services here - Occupational Therapist, and therefore equipment, etc.

William used the slip in pads, HillyBilly - if you are going with those, just make sure you get the proper pants to hold them in place! There are special pants for them. And I'm not actually sure if the HSE supply the pants anymore! Cutbacks! You can buy them online, or there's a place local to me that sells them if you do end up needing them - if it gets to that, you can pm me and I can send you some. They hold the pad snugly in place, and William only very occasionally had a leak. I also had washable chair pads on his chairs and on the car seat (like the kylie sheets, but cushion sized, and in various colours - also available from www.completecareshop.co.uk) That also helped keep any possible smells under control.

 

[HillyBilly]

Trousergate

I have the washable chair pads in place

PHN came this morning to assess Mum. In the middle of her assessment Mum took herself to the toilet and decided it was the perfect time to have a bout of diarrhoea Cleaned her and the bathroom up, had to change her tight jeans for the dreaded "baggy" jeans (the only jeans that aren't now in the wash). The PHN checked her skin while Mum was in a state of semi-undress.

Once all cleaned up and back in armchairs, the PHN unfortunately had to carry out a memory test assessment. I say unfortunately because this seems to have disturbed Mum's equilibrium, knowing that she was unable to answer most of the questions

The PHN advised on the incontinence products that are available and I collected a sample of big pads and some net fixation pants this afternoon. Only 4 pads/day is the allocation so will need to monitor pad-changing very closely. Mum will be wanting to change it as soon as it's wet and apparently that is not how it's done.

OH and I then took Mum into town to go food shopping with us but all the way there she was complaining about her baggy jeans. Then she announced that she wouldn't be getting out of the car. Tried bribing with promise of food but no joy. So we had to leave her in the car while we did our errands and some shopping. But first I went to the St V de P charity shop, bought her yet another pair of "skinny jeans" and took them back to her in the car as a peace offering. We returned about 20mins later bearing chocolate cake, which she ate, sulkily. Got home, changed her into her new fixation pants and pad and skinny jeans. She then started complaining that the new jeans were too long Tried explaining that all other jeans were in the wash etc. Mum said she was fed up with me telling her what to do and took to her bed. has even missed lunch!!!!

Nasty feeling could be a UTI brewing...I shall call this one "trousergate".

 

[Amy in the US]

Thank you for the patient explanations about PHNs, HillyBilly and LadyA. As you know, we have posters from all over the world, and it can be confusing trying to sort out how things work in different countries, or counties, or postcodes. I don't even understand the system here in the States, most of the time, so thank you for bearing with me.

I assume that this puts you on the PHN's roster or client list, or whatever you call it, and hope you can call on her for additional help as you need it, HB.

Between your mum's disturbed night, and her behaviour today, I would say it's hard to tell if she is tired, was upset/overstimulated by the nurse's visit (I hope future visits will be more familiar and thus more "routine" to your mother), or is starting an infection, or perhaps all of the above. It's so hard to know.

I know that part of my mother's issues with her clothes also involved only wanting to wear the same things over and over. In fact, she still does this in the care home. I think it has to do with her only being able to "recognize" certain items or fixating on them for whatever reason. The only way I've gotten around this is duplicate trousers-multiple pairs of the one style, in the two colors, that I know she will wear.

So I'm not surprised to hear that your mum has fixated on the jeans, as it seems to be all too common. I'm sorry if this causes headaches for you.

I know what you mean about the not-so-subtle care home aroma of wee and agree it's to be avoided. You might check for "hidden" soiled clothing or pads in her room as that could be causing the smell. (Another practical tip I've garnered from here on TP. Under the bed, under the mattress, between furniture and the wall, down the back of the radiators, dresser drawers, and on top of the wardrobe are places I've seen mentioned.) I'm sorry to have to suggest that. I'm also sorry to say what I'm about to say, so please forgive me. I don't know what type of flooring is in her room, but might she have had an accident and you might be smelling that? Obviously you'd notice a puddle, but perhaps just a drop or two. Sorry.

Hope you have a quieter evening and sleep better tonight.

 

[HillyBilly]

Oh I know there's a bit of a trail of wee between bed and chemical toilet - the carpet is damp in the mornings. I am spraying and brushing and dabbing.

First experience of fixation pants and pads not a success. Mum napped/sulked for about 3 hours in bed. Somehow, silently she managed, during that time to remove her new tight (and now wet) jeans, remove the fixation pants and pad (and knickers that were over the whole lot) and replace with pull ups and another pair of jeans Oh and she removed the t shirt from beneath her cardigan. Emerged from room bleary eyed asking ferociously where her clothes were

I think not UTI but bad vibes as result of PHN's questioning as all Mum would say for about 15mins was that she wanted to go home, to a place the PHN had asked her about. Made her a cup of her favourite tea, carried on as if all OK and eventually the dog worked his magic and snapped her out of her bad/sad mood.

Had dinner, got her showered and back into fixation pants and pad and put her to bed. Have removed all pull ups from view and replaced with new pads so god only knows what's going to happen when Mum gets up for the loo in the night. I've repeatedly demonstrated the new pants/pads but I don't think it's going to work - it's so hard to introduce a new system isn't it?!

Day care tomorrow - no idea what I'm going to find her to wear as now ALL "acceptable" jeans need washing.

Mum snoring, with dog, oblivious.

Oh - had a bit of a shock when I picked up the GP's part of the Carer's Allowance claim form this afternoon - he has stated that Mum has "severe" dementia. With a diagnosis date of January 2012. I am assuming that he's got this info from Mum's UK medical records. Am wondering if I've got the right mother or if he's got the right records!

 

[LadyA]

Sounds like he's being helpful. I'll pm you.

 

[HillyBilly]

Sounds like he's being helpful. I'll pm you.

Last night Mum was like one of those weather house figures - appearing at her door every two hours to go to the toilet. 2am, 4am and 6am. Had to get up too in order to supervise new pad system. Seems to be OK but will have a sniff of bed/nightie later

I didn't bother to go back to bed after the 6am shift. Tired and now an hour's round trip to drop Mum at day care. Is it ever worth it - 2 hours driving for 5 hours "off"?! I wonder how much a taxi would cost? Probably a small fortune.

I've been trying to "get to the bottom of" Mum's 2 bouts of diarrhoea. I don't think it's the water or even my cooking and I'm fastidious about hand hygiene etc. My latest thinking is that it could be...the milk! We get "raw milk" from our neighbouring dairy farmer - it's lush - but yesterday Mum had it on her Weetabix and then was poorly. So perhaps I'll have to get in regular shop bought (watery in comparison) milk for her...sigh.

 

[LadyA]

I don't know where you are in Ireland, but there's a dairy in Wexford called Fairfield Farm that do non-homogenised milk. They deliver to various places - but I'm not sure how far. Or you could "pasteurise" the milk yourself - heat it to scalding, then cool it very quickly (maybe in a bowl of ice-water?)

 

[HillyBilly]

We're down in Co Cork LadyA.

Have performed smell test on nightwear and bed and there seem to have been no overnight leaks with the new fixation pants and pad system.

Mum is at day care. I have done more laundry and cleaning. OH and I both tired - how do you all deal with this sleep deprivation?!

 

[Tin]

Years ago I used to buy "raw milk" played havoc with my insides, so maybe you have found the problem, does she have it in her tea as well? Sleep deprivation for me goes up and down, sometimes I leave the chores and take an afternoon nap, it helps a little. Are you cutting off liquids at a certain time? For me getting mum up at midnight and using the commode in her bedroom goes a long way to cutting out her up and down through the night, but the battle is always there because sleeping/laying down makes everything relax including her bladder.

 

[HillyBilly]

Yes Tin - I've been putting the raw milk in her tea too! It just never occurred to me before last night, as we all drink/use raw milk here!!! Anyway have now bought in some pasteurised supermarket milk which is to be for Mum from now on.

Am barely giving Mum any liquids from about 4pm, just sips for pills and with meal. Am not sure about getting Mum up for a pee - seems a bit cruel?! Not ruling it out mind!

Mum had a good day at day care - she won a little box of chocolate biscuits in a floor darts throwing game Stopped off at LIDL on the way home and she pootled round with me quite happily on her frame. Helped her to finish a crossword this evening, she brushed and petted the doting dog and (poor tired) OH amused her greatly over dinner with chit chat and word games. Gone happily to bed. Expect the snoring to commence soon. Has had no afternoon nap so please god she sleeps through til a semi-reasonable hour!

 

[HillyBilly]

Bathgate

Had a pretty good night - Mum up at 5.30 and 7.30 to go to the loo - I listened out but let her get on with it and all was OK.

Confused as to where she was when finally up. Breakfasted. Then said she wanted a bath, not a shower. Ran her a bath, got her in, dog beside her on the bath mat, classical music playing, lovely ta. 5mins later shouting that she wants to get out, doesn't like having a bath, wanted a shower. Great trouble getting her out of the bath (no more baths!).

Now having a strop because I'm "telling her what to do and what to wear" and "they didn't do that in the CH" Refused her meds until I told her that she'd end up in hospital if she didn't take them.

 

[Amy in the US]

HB, I'd say give it a week or two without the raw milk, but doing everything else the same (in terms of food), and see if the diarrhea/diarrhoea stops. I think you've probably hit that one on the head, although there still could be some element of adjusting to home cooking and moving and a new routine. If that doesn't do it, I'm out of ideas, other than to talk to the GP/nurse.

I read a lot here on TP about difficulties with bathing and hygiene. At some point showers become not viable for a lot of people with dementia but if they work for now, go for it. You could also try strip washes/sponge baths, perhaps? I feel sure my mother hasn't had a proper shower or bath in years and am not sure how she doesn't smell, but she doesn't, so we will run with that.

So how are you sleeping? How are your stress levels? How are you and OH coping? If you care to talk about it, of course, please do feel free to ignore me!

 

[HillyBilly]

Trousergate part 2

Am not going to risk Mum on the raw milk at all any more - fingers crossed all OK in that department today.

Mum's been perfectly happy to have a shower, almost daily, but was adamant she fancied a nice soak in the bath this morning - look where that got us lol.

We are feeling more "with it" after a half decent night's sleep, but with Mum's latest shouty strop still going on (turned down cups of tea AND lunch) - the focus of which has now reverted to trousers (even her own old original jeans that she bought years ago are no longer good enough and the new skinny jeans I bought her last week and with which she was perfectly happy to start with are now "too big around the waist and too long") - we are all a bit stressed. Including the poor dog whose advances have been rejected...me and OH can deal with it but I'm not having my dog upset

I now understand what some of you guys mean when you say that a PWD can suck the joy out of a room. Beginning to doubt my ability to do this long term! Anyway Mum's retreated to her bed so I'm taking the opportunity to catch up on doing the business accounts for OH...

 

[LadyA]

When I was training, I described William's behaviour and attitudes to the tutor one day, (he was still in early-ish stages, undiagnosed) and how he could change the atmosphere of the space and affect the moods of everyone around him, but he wasn't actually doing anything! "Yes." she said immediately "Psyche vampires." - and that describes the phenomenon exactly!

 

[Amy in the US]

HillyBilly, I think your instincts on discontinuing the raw milk and the baths are smart. Go with your gut feeling. I think that maybe something in the bath is going to "break" so that baths are no longer an option. (Mum, I know you fancy a bath, and that's a great idea! However, the drain's not working properly at the moment so it'll need to be a shower for now.) Maybe the plug got lost? The plumber needs to come? The tap isn't working? No hot water right now? I am sure we could get creative!

Sorry she is still kicking up a fuss about the trousers. How tiresome for you. I wish I had brilliant suggestions but really don't. She may be impossible to please, on this subject.

I'm feeling fussed about new trousers for my mother; she's gained weight so I've ordered the next size up and they arrived yesterday, but they look huge and I worry she will reject them out of hand. (In her head, you see, she is still very slender, although this is, ahem, no longer the case.) So I dither: should I order a different size? Should I wash them and take them in and see if she'll wear them? Will she reject anything new? Should I put her name in? But what if I have to return them? And so on and so on. I know it's not worth spending time and energy on, I know that all I can do, is the best I can do, but sometimes you still find yourself worrying. I know perfectly well I should go take a walk or sit in the sunshine (while we still have it) but...sometimes you just feel stuck.

Sorry, did not mean to blather on about myself quite so much. Hope you have a better evening and that she'll eat something.

LadyA, I like the vampire story!

Best to everyone.

 

[HillyBilly]

I'm feeling fussed about new trousers for my mother; she's gained weight so I've ordered the next size up and they arrived yesterday, but they look huge and I worry she will reject them out of hand. (In her head, you see, she is still very slender, although this is, ahem, no longer the case.) So I dither: should I order a different size? Should I wash them and take them in and see if she'll wear them? Will she reject anything new? Should I put her name in? But what if I have to return them? And so on and so on. I know it's not worth spending time and energy on, I know that all I can do, is the best I can do, but sometimes you still find yourself worrying. I know perfectly well I should go take a walk or sit in the sunshine (while we still have it) but...sometimes you just feel stuck.

Who'd have thought that trousers could cause so much stress lol! Hopefully your mother will accept them without any fuss. But then again she could perform a U turn a few days later and reject them, like mine's done!

Ironically the majority of my own trousers are worn out old things with more holes than fabric. I can't remember the last time I bought myself a new pair and yet here I am surrounded by a pile of brand new rejected trouser offerings, debating whether or not I can be bothered to send them back. If I could drop a couple of sizes overnight I'd wear the bluddy things myself!