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Sandwich generation

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jugglingmum

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Jan 5, 2014
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I guess someone has to pay the care firm for an extra hour?

I'm not sure how this works out - mum is in sheltered extra care - so whilst it is care calls to her flat, it is the same team of carers on site all day, somehow they've fitted in taking the food up from the restaurant etc.

There is also a senior on site who does do calls but also has office time so I guess it came out of office time.

They are very flexible and if something needs doing it happens - but lots of carers on site so some flexibility.

Mum pays the council for her care and the council pay the agency.
 

jugglingmum

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Jan 5, 2014
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I was going to write a little about what we've been up to, but need to get thoughts around MIL out of my head.

At the end of our second week of holiday we called in on MIL - a several hours of driving detour but nearer than doing the round trip from here. We stayed for about 24 hours, sleeping in our campervan, with son in his little tent (as we did on campsite) and trying to social distance when we were in the house, but MIL didn't really understand this fully.

As some of you will recall I have been concerned by MILs declining abilities for a while, she was 93 in April. I am sure it is dementia but OH and his sister would prefer to consider it as just normal ageing, we all have family like this, head semi buried in sand.

We normally only visit MIL once a year, at xmas, and she has noticeably declined since then. Whilst she hasn't been able to go out with lockdown she has had people coming for garden visits once the rules allowed, and I don't think it has all been caused by lockdown. Her mobility is significantly worse. With not having trips out, I am sure this has been affected by lockdown, her friend P has suggested she walk to the end of her drive each day, which is really not that far, but she doesn't, she has for a long time only done the minimum. OH had a sit outside with her, she only had an old style folding camp chair, well she couldn't get out of it and when OH helped her she was a dead weight offering no assistance. She does wear a call alarm pendant all the time, so if she fell she should be able to press this, but her friend P did comment that when she had had a fall she was a dead weight for her as well, but her son was there so they got her up between them. I noticed that when getting out of chairs she was really struggling, and could easily fall as she attempted this. MIL walks with a stick and puts a lot of weight on it, her friend P got her zimmer frame to help her get back in the house and she was much more stable with this. MIL has a very lopsided body, she was born with a congenital hip issue, and she has always lent over - was told she'd be in a wheelchair by the time she was 30 so she has done well but there is only so much more her body will do.

I also noticed significant post sitting around undealt with, and suspect she hasn't properly managed her financial affairs for years (as I've posted before she got in a terrible muddle with her electricity payments 4 or 5 years ago). One letter was saying her standing order was overpaying but they couldn't refund it until she amended the standing order as they'd already requested this in 2018 - small amounts in the grand scheme of things but will need sorting at some stage.

She has had a cleaner and gardener for a while and both do a good job so at least that is covered.

She is getting deafer, and completely tunes out of conversations if she can't follow them, this reminds me of my mum's behaviour. I noticed this particularly at meals times as she couldn't seem to cope with eating and being part of a conversation. Her friend called round and commented on also being deaf, but her friend still followed conversations and asked. MILs conversation is more self centred than ever, and any empathy she had (there wasn't much) has gone.

OH messaged SIL when we got home, and SIL commented that MIL was saying no to everything, SIL had suggested sending MIL a book to alleviate lockdown boredom and getting a TV and both met with a no. The TV would never been switched on but she should have just sent a book, we know that 'no' is a stock answer. MIL has a lot of books and I think in reality she doesn't have the concentration to read them.

I also think she doesn't have the concentration to do much, but OH said she says she does this and that and I queried does she really and he was convinced she does.

SIL also went back to her pet topic of live in carer in her reply and how the bathroom needs sorting out. She also wants two spare bedrooms sorting out so live in carer could have bedroom and sitting room. Her current bathroom has major issues, the shower dosen't work well, the shower plumbing means water comes back up in the bath, ther hot water tank is tiny so the bath is only half full when used. MIL wouldn't even consider trying to get in the bath, doesn't use the shower and just has a strip wash, which horrifies SIL but given MILs age and background is just what was done.

OH just wants to ignore it all. He commented on SILs bathroom refurb ideas as to how it will happen, it is beyond MILs capabilities, BIL has effectively disowned his mum (OH's words), SIL is in Colorado with no prospect of visiting anytime soon. Friend P has just bought a 'project' house she is living in with no heating or hot water for now, although there is an electric shower, first project is garden shed with outside toilet and then onto the house, and at 78 could have her own issues. She has the time and energy to manage her own house but not MILs as well. OH isn't close to his mum hence only an annual visit, and does not wish to do 7 hour round trips to supervise building works, and feels SIL is trying to dump her romantic idea of a live in carer on him to fix.

I said that MIL is a long way off a live in carer and there are lots of things to be done first such as befrienders. MIL doesn't yet need any daily help of any sort but care calls can be arranged if needed.

One of the issues is the rural location, the nearest supermarket is a 40 minute drive away, although friend L has sourced the cleaner from the local small town, and I guess would be able to source carers from there as well. L is a former district nurse and has arranged for MIL to have a hospital bed, although MIL was complaining it was too high, I think that has now been sorted. Not sure why a hospital bed apart from it was a way of getting rid of her old bed that had an ancient mattress (prob over 50 years old and maybe over 70) on which was so saggy MIL struggled to stand up.

On the plus side I managed to explain to OH that it wasn't about what MIL wanted or we thought she wanted but about her needs, eg SIL wanted nice wooden outside chairs buying and we are getting plastic ones she can stand up from, and are easy for her friends to move. I used examples of being told my mum was safe now when she moved into sheltered extra care, and I wanted her to be happy, and was upset by this at the time, however, I realised being safe was what mum needed and she hadn't been. There was a little light bulb moment when I said this to OH.

I could really see that a crisis could happen very soon, I haven't felt this before, just worried about the long term logistics, and I really think she will need a care home within 2 years but it could happen this winter, I think a bad fall would not be recoverable from mobility wise. SIL thinks MIL has a good few years in her own home but she is projecting what she'd want onto MIL with rose tinted spectacles - partly because she feels MIL had an awful life whilst she was married - which is correct but not OH's desire to solve as he also had an awful childhood.

MIL is adamant she wants to stay where she is as she loves looking at the views, as she doesn't go into back garden, and her bedroom looks over a small bit of lawn and the garage, and she sits down to wash up so doesn't see out of the kitchen window, I'm not sure she looks at the views that often and this is what she used to do (the views are at the back).

Well this post is very long - longer than @annielou writes(written over a few days) so if anybody reads it - Thank you. Not sure what I'm saying apart from I can see a crisis on the horizon and OH resenting having to sort it out, so he will struggle to deal with it.
 

annielou

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Sep 27, 2019
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That is a long one, :) You had lots to write about though 👍 Mine are often just long cos of me rambling on, my mum used to say Our Andies motto should be why use one word when you can use three, she'd certainly say that if she saw some of my long posts, some of mine come up saying they can't post cos they're over the amount of characters allowed and I have to edit them :oops:
You had lots to report, it does sound like MIL is declining and SIL and OH will eventually have to face up to it. It must be harder to deal with when not had great relationship with them and even though they need help they still say no. From your own experiences with your mum you can spot things so hopefully they will keep having lightbulb moments. You have lots on already so I hope help can be sorted when needed without too much impact on you. 🤞
 

Batsue

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Nov 4, 2014
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It certainly sounds as if MiL is going to need more support soon, as you say it is about keeping her safe an not necessarily what she wants, my mum always said no to everything that was suggested for her benefit.
My brother had his head in the sand during the early stages and it took a psychotic incident before he realised what the situation really was, it will probably take a crisis for your OH and SiL to fully accept that more help is needed.
 

anxious annie

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Jan 2, 2019
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I'm sure you're right and that a crisis will come soon. No doubt your OH and SIL will realise this in the not too distant future and get some care in place when your MIL needs this. IT sounds like she has some very good friends helping out, which I know, is such a support when caring from a distance. Long journeys are not good to have to make on a regular basis, but it's amazing with technology what you can accomplish when living away. Hope things go as smoothly as they can for you.
 

Sarasa

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Apr 13, 2018
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We're at the stage where my mother in law's needs far outstrip her wants. Trouble is two of the four children want to maintain the status quo. I can see it is going to be tricky, and will probably only be resolved when there is a crisis. I just hope it isn't too serious a one.
Hope you can get something resolved that keeps your MiL safe and satisfies SiL too.
 

jugglingmum

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Jan 5, 2014
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20200826_095605.jpg
Son's flooded veg patch. L to R cucumber broccoli and carrots. Also at the other end are flooded potatoes. This was after Tuesday's rain. It had dried out a lot yesterday but as bad as this again after today.
 

Spamar

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Oct 5, 2013
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Suffolk
Yes, you definitely had rain! Far more than we have down here! I don’t grow any veg any more, but I can never remember my garden looking like that!

Unfortunately I’ve been told I need a new knee! The other knee, I had one done about 15 years ago ( and a hip). But how long is that going to take! I’m guessing at least two years. Don’t think my comments are printable!
 

jugglingmum

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Jan 5, 2014
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I've started typing a post on here a few times and not finished it and then if not edited for 24 hours it disappears. I have been reading threads but somehow have other things to do so haven't posted as much.

@Spamar - sorry to hear you need a new knee, if you've got any savings this is the rainy day to use them.

So ongoing issues from all directions at different levels.

Update on mum first:

I've only visited when she's needed food delivering or for medical related reasons as I don't want to risk taking any infection in, not just worried about passing it to mum but it would then pass on to carers and other residents of apartment block.

Mum seems to be sleeping every time I visit, she used to do puzzle books (jigsaws long since abandoned) and was doing these in hospital in Jan. She is deaf and hearing aids were beyond her, she kept putting them in safe places, so I've been writing for her, but when I wrote something on a visit in October I wasn't sure she could read it fully. She's often has fallen asleep with her food in front of her when I visit, wakes up for a bit eats a bit and falls asleep again. The carers says she won't let them remove cold food and keeps picking at. I don't think she has lost weight particularly but don't like her being left with her food like that and eating it cold several hours later.

I took the decision I wasn't sure how easy it would be to get her to the GPs for her flu jab as she hasn't left her flat since March. The first time the nurse visited mum wouldn't cooperate, so I went down for another appt to meet a different nurse and she was very very compliant. They also took bloods, and this came back that she is dehydrated and a district nurse will visit to take them again. I am aware she isn't drinking a lot, she hasn't done for a while, and this has been in my mind when considering a care home as an option.

Some of you will recall that mum was in hospital in Jan and I considered a care home then, but when she got back to her flat she was very eager to get down to the restaurant. Based on this and the fact she likes her privacy and was still doing puzzle books I decided that she was in the right place for now.

But following lockdown and the restaurant being closed for months, when it reopened she wasn't interested in going down, and hasn't left her flat since March. There has been a clear downturn in her, whether it is lockdown or natural progression I'll never know, but lockdown clearly hasn't helped.

She doesn't have the maximum 4 care visits but given she doesn't interact with carers much, she doesn't need any more care visits. I don't know whether the stimulation of being in a home would be good for her and the walking to the dining room daily would get her interested in things again. I'm sure that she needs prompting to drink and the lack of liquids won't help with the sleepiness.

I am 80% certain a care home would be the right thing, but then I need to consider where. There is one very close to me - less than half a mile, with dementia care and a good reputation. I looked round it in Jan and the communal areas were really nice. The rooms are smallish, and there are no en suites. I know in the long run that this doesn't matter, but I suspect at the moment it will make a difference. OH thinks it would be better for mum to have an en suite, but I was informed by a good friend ( retired hospital social worker - she was very clear) that otherwise I need to look at homes in a neighbouring town, half an hour each way drive, and not my town and I've never looked round them to have a feel for them.

I sort of feel that if it hadn't been for lockdown I might have moved her in the summer.

At the moment the care team where she is are happy to continue looking after her, and have worked out how to get her in the shower etc. At one stage she went over a year with out a shower, and now it is several times a week. She has had the same carers for 7 years and they know her well. She knows her way round her flat and clearly feels settled and secure in it.

I have had no contact with my brother since mum needed ABs in mid March and I said I didn't want her to go to hospital at that time. However I also know he'll just say whatever you think is right and thank you for dealing with it, so I don't want to contact him just yet. (I am in touch with his ex and their kids)

When I visited the home near me in Jan many of the residents seemed less advanced than my mum so I don't know how far they continue but if we get to visit soon I suspect this is the right home as I can pop in easily (it is next to my pharmacy, across the road from the post office and coop).

I suspect she'd be happier in a home for Christmas as well, rather than stuck in her flat on her own. But I might be assuming being round others would pick her up, when it might not.

Sadly we don't think it would work for her to come to us, it didn't really work last year, the kids found some of the present unwrapping (we did most before we fetched mum) and Christmas dinner too much. My son is 15 and although he has had a much better year than many he has found this year very hard, he has a second round of mock exams in early Jan and I know he is desperately looking forward to a nice day, it isn't just about my mum but all of us. It will be the first year mum hasn't spent with one of her children, a few years when my nephew and niece were small we spent it with them but mum was still at my brothers and we joined for boxing day. Since the kids were born mum used to come to mine for over a week until her crisis.

Whoops - didn't expect to write such a long post, and I've left lots out as such a long time since an update. I still feel very uncertain of what to do. Thanks for reading if you made it to the end.
 

Shedrech

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hi @jugglingmum
I get the feeling you are talking things through for yourself, rather than for responses, so nothing other than ...
you say your mum doesn't need 4 care visits but also that she is dehydrated so could the visits be focussed on sitting with her to drink something, that way you know she has fluids 4 times a day, and the carer could leave her something too (I used to leave dad carton drinks with the straw already inserted and individual jelly) ....
 

Izzy

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I hope putting your thoughts down in print has helped you sort things out in your mind. A hard decision to have to make but it sounds as if the facility near you is a good option.
 

Grannie G

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Apr 3, 2006
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Hello @jugglingmum

Not knowing whether or not the time is right for residential care is a situation many of us have found ourselves in and I hope writing it out has helped you collect your thoughts .

Your mum`s sleeping so much will be part and parcel of her dehydration. Sleeping and dehydration can lead to confusion, which in turn could cause your mum to fall which would be an additional worry. Even though it could also happen in a care home at least she would receive immediate attention.

Having a care home so near to you is a bonus. Few homes are perfect and an en suite will be a short term advantage as I found with my mother and my neighbour.

If your mum has spent so much time alone I would hesitate to move her to residential care before Christmas. I have found Christmas in residential care to be quite overwhelming for residents. One senior carer told me they make such an effort to please the families rather than the residents and I tend to agree.
 

Bunpoots

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Apr 1, 2016
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Hi @jugglingmum

One of the reasons I hesitated for so long to get my dad into a carehome was that he too was fond of his privacy and needed his own space. I agree that getting four care visits a day would be a good idea. Dad never objected to his carers - I think he quite enjoyed the short visits and the chit-chat that went with them. It also meant he was eating and drinking more than he would’ve without.

The carehome close to you sounds like a good option. The one my dad was in had only two en-suites but dad never used his even though he had that room for a couple of weeks. There were plenty of loos around and he’d only have a shower if he was persuaded by the carers.

I agree that after Christmas might be better given your mum’s personality. Hopefully visiting will be easier by then.
 

Sarasa

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Apr 13, 2018
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Good to read the catch up about your mother @jugglingmum . I too think upping the care visits to four a day sounds a good idea so your mum is given plenty of prompts to eat and drink. Also the care home near you sounds good, but maybe for after Christmas than before. Mum's care home is a modern purpose built one so everyone has an on-suite. Not sure how much mum uses her, or if she even remembers she's got one, so though at the time I moved her it felt important, I'm not sure that it would now if I was looking for a new home for her,
 

jugglingmum

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Jan 5, 2014
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The care visits aren't that easy to increase, it is a banded thing and my mum is on band 3 which is 10 hours a week. She gets 4 15 minute visits a day officially I think - I find it a bit vague as to what happens in practice as she seems to get more than this but some visits are pop ins to put a drink in front of her - plus extra time for shower - which is often refused. In reality she wouldn't drink whilst they are there and they do make sure there is a drink out. They have offered different drinks and asked me to buy different drinks depending on what was working - at one stage capri sun and currently squash.

To move up a band requires a social work visit reassessment, and approval of the additional banding. This would move her to 15 hours a week (band 4). Whilst she is self funding care is via social services, and she pays social services who pay the care company.

As she is deaf the carers find it hard to engage in conversation with her (they tell me they like her sense of humour and do try hard) so there seems little point in extra visits.

I had thought that she might enjoy Christmas in a care home but thinking about how she is she might find it confusing and needs a regular routine to settle, which is a point I hadn't considered.

When I wrote my post part way through I convinced myself one way and by the end I had convinced myself the other way. She is very settled where she is, and I do think the sleeping most of the day is progression of dementia not lack of stimulation. I had gradually cut down the time she came over to our house for a couple of years ago as it was clearly too much and tired her out - we went from a couple of hours to less than an hour.

From a selfish personal perspective I am swamped at work until xmas and will be able to use overtime in Jan to take time off if I moved mum in Jan.

I still feel very undecided and that I am avoiding making a positive decision to move her - but some of this is that I know she is settled where she is, the carers know her (same ones for 7 years) and kow how to get her to shower etc.
 

Grannie G

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If you know you will have more time in January @jugglingmum that will be best. I`m sure the Christmas you provide for your mother in her own place will be just the Christmas she needs.
 

jugglingmum

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Jan 5, 2014
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I still don't seem to have found time to keep this thread up to date.

Last Christmas we had decided that mum wasn't coming to ours for Christmas day again as it just wasn't working. Given she has gone downhill a lot this year it clearly wasn't an option to consider.

I had hoped to visit with the children on Christmas Eve but too many things to fit in as ever (crafty family making crafty presents last minute as ever).

We were aware that the rules said Christmas day only but technically I guess mum is in our 'social bubble' so any day was OK. We went on Boxing day with a few presents - dau made sure she used tiny bits of sellotape, I had a small cat statue bought for her 90th which we took out of the box, removed internal packaging and put back in unsealed box so she could open easily.

Mum was asleep when we got there, and we woke her up, she didn't think to move to living room and I didn't suggest it as I knew this could take half an hour. When we arrived I thought she knew who we were, and happily unwrapped presents, and enjoyed doing that.

She then started asking who the children were, although she clearly was familiar with them, she is very deaf and I forgot to take the writing board I use, which might have helped, she didn't recognise the children's names when they said them. They hadn't seen mum since last Christmas but she has been unable to remember their names when I have visited her over the last couple of years. I did notice she didn't say my name, which hasn't happened before. She normally says my name when I arrive, and has done every time I have visited this year. She clearly knew we were all familiar but not who we were. But not sure she 100% knew who I was.

After unwrapping the 3 presents we had taken she was clearly getting tired again, so we left, we were probably only there for a maximum of 20 minutes. Mum really wasn't up to engaging once the presents were unwrapped and I think the children might not visit her again, they enjoyed their visit, but were very sad that she has changed so much in 12 months. She was happy in the moment but will have forgotten our visit very quickly.

I do feel that most of her decline this year is what I was expecting rather than lockdown but lockdown has speeded it up a bit.

I feel sad she didn't seem to really know who I was.

I am also disappointed that my invisible brother hasn't enquired after her at all, unless he has broken the rules and visited her - there was an empty box of chocs of the brand he has bought in recent years on the floor but as she refuses to let the carers throw things away these could be from somewhere else in her room ( I wouldn't expect him to let me know - he lives 2 hours away).
 

Sarasa

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Apr 13, 2018
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Glad you got to see your mum and she enjoyed the present opening, even if she wasn't quite sure who you are. I thought my mother had forgotten my name last year, but then she seemed to remember it for a couple of visits. I'm not sure if she remembers it now, or even really knows I'm her daughter. I think not having your mum at yours for Christmas was wise. Mum was very keen to go to my brothers the last Christmas she was at home, but she couldn't really cope and neither could we.
 

Woo2

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Apr 30, 2019
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I’m glad too you got to see Mum and her opening her presents , sad to think your children won’t visit her again but seems wise and the right thing to do for them .
Christmas was difficult for mum and it will be our last with her here .
 
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