Sandwich generation

ButtercupFields

New member
Dec 25, 2019
7
I put a lot of weight on in the autumn - partly work related stress - I did advise different partners (my boss - in a partnership you have lots of them) that I was on the verge of handing my notice in from the start of Sept to end Oct - and partly illness and lack of exercise. Maybe we need to get @Grannie G to bring back the weekly weight loss thread, but not before I go away this weekend - mulled wine, G & T and red wine all will be travelling with me.
I am in the same boat as you. I gained about 30 pounds since Aunt came to live with us. Definitely a stress eater. The early days were non stop stress night and day. Food seemed my only comfort. I’ve gotten my diet under control now that stress has gone down. Just hope I can keep it that way if/when another hospital admission happens.
 

ButtercupFields

New member
Dec 25, 2019
7
Yesterday was the same, normal day. Rather like Groundhog Day around here for past few weeks. I am not at all complaining. It is a routine that all seem able to live and cope with.

Aunt was admitted to hospital in mid November due to fall that fractured ribs and a vertebra. After surgery and 10 days in hospital bed barely moving, her mobility had gone from actively moving around house with no assistance to hardly able to stand with 2 people assisting. No walking. It was a big shock/crisis for us, since we had no idea how do the appropriate care with such an immobile person and didn’t know if change was permanent or not. Luckily, I’ve had a little nursing training, and tried to pick up all I could from nurses in hospital, and we had a lot of home services after discharge. So even though she never regained her previous mobility level, she has gotten back to being able to walk with a frame with wheels and one person as assistance.

With all that said, it is actually a benefit to us carers that she did lose some mobility. I hope that doesn’t sound too awful, but now she is at little danger of falls since she can’t ambulate independently, and isn’t chasing us all over the house or escaping out the door when agitated.

Normal day now is up at 8, mood good usually so we always bathe her in morning. Bed baths except on Saturdays. I stay home until 9 to help with this. Then she goes to her lift chair in living room, and I go to work. We have a over lap tray for her food. She is on purée diet now. Chewing was wearing her out and she would take more than an hour to eat. At noon, my 2nd oldest daughter is done with work, so she assists oldest Dau (main carer) to take Aunt to bathroom. She is fully incontinent, but if we take her to toilet, she will usually go in there which is great when you have fecal incontinence. It requires two people because if she gets angry with personal care or has a mess, you need one person to keep her standing and holding on to frame, and one to clean her up. We never know when or if she will kick off. She is on a very high dose of anti-psychotics, but they are not effective at completely eliminating aggression and violence.

Then back to lift chair until 4-5. We have found that the later we wait to take her to her bed, the worse she becomes in the evening with sun downing as far as working herself up, so she is toileted, changed to nighttime incontinence pants, and put in bed at 4-5. 80% of the time, this will make her angry and violent. If she can see anyone when like this, she will just keep being agitated, so being alone in her room gives her time to calm down for supper. She has a hospital bed, so we sit her up and give her supper/tea about 6:30 or 7. I’m home from work at 7, so I lay her bed flat and make sure she has her room warm enough before turning off her light at 8. She sleeps through the night without issue since she has side rails on bed and can’t get herself out of bed even if she didn’t. I have a video monitor in her room so I can keep an eye on her without going in there.

Then the next day, we do it all again. Like I said, very Groundhog Day.

Right now, we don’t usually take her anywhere because the stimulation is just too much for her and I don’t want her to end up yelling and swearing at strangers, and it’s winter. But I hope in the spring, we can take her out for walks in her wheelchair.

I know another decline will come, I just don’t know if it will be days, or weeks, or years. Every decline comes as a shock and with sadness even though you know to expect it. She no longer knows anyone’s names, though I think she sees some people as familiar. Most of the time she can’t even tell you her own name and is largely non-verbal except when agitated. She just exists. No real life or understanding, rarely smiles, never laughs. In past 6 months, she has lost a lot of physical and mental capacities. It’s so hard to just see them disappear before your eyes with nothing you can do to help it.
 

Sam Luvit

Registered User
Oct 19, 2016
5,651
East Sussex
Hi @jugglingmum

I found you :D

I guess I’m not even part of a sandwich now, or the middle, but missing top & bottom layers

Although both my “kids” have left home, youngest because I sold up & moved in with mum. I felt so torn, but he told me I had to do what was right .. he got a full set of white goods & lots of basics for his first flat .. so he did well :p

I was full time carer for mum, big brother was definitely invisible, but he became my vent as I’d phone & scream about mum .. then he was an absolute rock at the end. He moved in for the last 3 weeks, took her to the loo, sat her on the commode later, without batting an eyelid. Calmly informing me “well I wasn’t going to wake you at 3 in the morning when you’d only had an hours sleep, now was I?”

I‘m pretty much adrift now, floating around the bay, figuring what to do next.

Please keep your fingers crossed that Poppet 11 gets through her MOT this week & can actually take delivery. I need the freedom she will bring

I put on about 3 stone looking after mum. Home cooking high calorific meals :eek: I’m back to normal eating, so with the extra walking involved in my new job ... I’ve lost almost 2 stone in the last 3 months. I must shop for smaller jeans .. I’m literally walking out of mine :eek:

My mum lost some mobility after hospital admissions, but got lots of it back with OT support. Fingers crossed your mum does too @jugglingmum
 

jugglingmum

Registered User
Jan 5, 2014
5,479
Chester
@ButtercupFields hats off to you and your family for being hands on carers, not something I think I could do

Hiya @Sam Luvit - glad you found me :eek::D:p:p:p - lots of emojis which nitram won't see

visited mum today, back on iv anitbiotics which I wasn't expecting - good job she had to be kept in due to loss of mobility - but on the plus side she had been sat out in the chair for most of the day. I think she is only managing to transfer from bed to chair and back. I'll try to take her in something to read/do for tomorrow - she was bright and chatty (I have to write on white board) for the time I could wake her up - which wasn't long - suspect she was tired from being out of bed.

Son hasn't had any fencing competitions since before xmas - and the last one in Dec as it was the regional comp in went in the NW minibus so I have had a bit of a break from travelling. Realised today that he is fencing on 5 out of the next 7 weekends. Back to it I suppose.
 

Sam Luvit

Registered User
Oct 19, 2016
5,651
East Sussex
Lol. It’s like coming home after a long break and catching up with friends. The beauty of TP and it’s healing

At least your mum is in the right place for them to check & treat UTI’s etc without the delays she might experience elsewhere. Hope the AB’s sort out whatever it is

A doctor told me that “deaf” ladies in particular can hear a deeper voice (men’s), so if you are able to, lower your voice an octave and see if that helps at all.

I’ve met a lady who has lost her hearing aids and I have to write notes for her. It’s very hard having a conversation like that isn’t it

When you are rushing around every week, you manage, but a six week break from fencing competition taxiing and then most of two months back at it is going to feel like hard going

It’s a pity you can’t share the ferrying to and fro with another parent, but I guess you also want to be there to cheer him on. Although if daughter is off at Uni ... does that mean you get to share with your OH, as he’s not tearing round with her activities??

I used to have to drag myself out to pick up youngest from table tennis ... but loved to see him play .. so there was a reward too
 

jugglingmum

Registered User
Jan 5, 2014
5,479
Chester
A doctor told me that “deaf” ladies in particular can hear a deeper voice (men’s), so if you are able to, lower your voice an octave and see if that helps at all.
this was true about 10 years ago, somewhat past that now.

Nurse I saw last night loved mum's mini white board, thought it was a brilliant idea, and said it had made communicating with her easier, and that despite his reluctance they had made the Dr use it as well. They said that she understood a lot more than they had realised (in the moment). I got the impression she might try and use it again with other deaf patients. She did comment it only works when they can still read.

Mum is on a 5 day course of IV antibiotics she told me - and that these had only restarted on Thursday - having not visited on Wed I wasn't sure - she said she'd been on on Wed and mum wasn't on them. She was a lot brighter in herself yesterday. I was a bit worried on Thursday that going back on antibiotics was the beginning of the end, although with the little comprehension and participation she has in life in the grand scheme of things I know that wouldn't be the wrong thing.

Mum had the remains of her tea on her table when I got there, they have told me she is a slow eater but won't let them take it away until she is finished.

She refused to get out of bed to her chair when they tried yesterday, and when I spoke to her she said what was the point in getting out of bed she was quite happy lying in bed. I thought this was going to happen. The nurse assured me that when she gets to a rehab bed the physios and OTs work with them intensely. I have had good reports from local hospital so hopefully she might get back to walking.

It’s a pity you can’t share the ferrying to and fro with another parent, but I guess you also want to be there to cheer him on. Although if daughter is off at Uni ... does that mean you get to share with your OH, as he’s not tearing round with her activities??
He wants a parent there to support him at the end of the piste, he has only been to one competition without me and that was the regionals when no one had a parent.

His coach will be there tomorrow but he has several fencers in different age groups so won't be able to be with him for every fight. In the knock out the fights are longer with minute gaps and so I do talk tactics with him in these (within my limited knowledge).

Dau raced cyclocross in the autumn so OH picked her up or dropped her off, so went from here to Sheffield to Swansea for example - the same weekend as I was in Watford. He's offered to do some. But he gets bored in the waiting around bits.
 

jugglingmum

Registered User
Jan 5, 2014
5,479
Chester
I decided not to visit mum last night. It is so hard having a white board conversation, which lasts a few minutes and then she doesn't understand. And I was tired from cycling - desperately trying to get fitness back. And just didn't really have the time to fit it in.

Ultimately I knew she was on IV ABs until Monday so no benefit in getting an update either.

Went this evening and she was much brighter than she had been, remembered son's name, told her about son fencing today, and then she asked does he fence because I fenced so I told her no I don't and I used to canoe. Thought she might remember - as she took me to lots of competitions and training when I was at school, and then when I had finished uni always came to visit the weekends we were canoeing as she enjoyed watching and I canoed for over 20 years, and my brother was also canoed. I met my husband through canoeing. She didn't remember but she asked questions about where I had canoed, and did I live near a river. I think there were some bits she remembered vaguely for it to make sense as it wouldn't otherwise ie she knew what canoe polo was - and most canoeists don't know that.

She did get out of bed today, and when she'd had enough of being in her chair tried to get herself back to bed - luckily someone was in the room, nurse commented she wasn't aware of her lack of mobility (there always seem to be lots of staff around)

Never finished commenting about last Friday. LA SW responsible for mum's sheltered extra care phoned to find out when she was likely to be discharged, and I said not until monday so she said therefore not her responsibility anymore and would pass to hospital SWs. Later on physio phoned to ask her baseline, Turns out they hadn't yet been to see her at that stage. As I'm not sure she is suitable for sheltered extra care anymore, I went and looked round a care home and put her name down, less than a 5 minute walk from my house with a very good local reputation. SW said it was good as well, budget. Rooms are fairly small with no en suite, communal areas were lovely as were residential dining areas, EMI dining area had wipe clean table cloths but what you would expect. I don't think mum will regain continence so no need for en sutie anyway.

Comments on independent SW made me remember I have a friend who has recently retired as hospital SW, so knows all the homes in the area and I finally caught up with her today. She confirmed that the one I like is good and she would go for it if she lived near me. She said the one her parents had been in was good, it is near her, 6 miles away, but actually very close to the 2 different locations son fences in during the week, so the right area of Chester. It has residential, nursing and EMI so can move about them.

I asked her difference between residential and nursing and she said if mum can get out of bed and into a chair or wheel chair that is ok for residential - it is if she can't transfer that nursing would be needed.

Her daughter works in hospital as a physio so will pop down to see my mum on Tuesday when she is back in work (I've known her daughter since she was a bump) which when I was messaged made me cry for people being so kind. I do cycle regularly with my friends husband and know them, from canoeing, meeting them when I was at uni before I moved to this area and canoeing with them regularly so friends dau knew me as she grew up and saw my kids a lot when they were little, and say and coloured with them.

I've been in Manchester all day, with son fencing, so got home and then visited hospital. Got back and dog widdled on carpet, I am so used to clearing it up it is one of those things - OH gets more down about it than I do, as dog no longer asks to go out.


Last bit of this ramble, weekend away last weekend was fab, we walked near Haweswater in the lakes, going up to High St, which was above the snow line, nice thin layer of powder. The descending was tricky with ice on rock and was quite a bit of scrambling. The group split into 2 and I went with the faster longer distance group - maybe a mistake - all the kids (aged 22 to 14) and vary active adults. I was really proud of myself being able to do this, although I was struggling near the end, we only just made at back before we needed torches ie it was pitch black. And we got back so late, it was an hour after G & T time and I just was a bit tired for the meal. Kids didn't come to bed until 12.45 but I had had to drive the 45 mins back to the youth hostel whilst they slept. Sunday was a very gentle walk, with the oldest member of our group - aged 81 (he has had clear signs of memory loss for a couple of years but managed perfect host mode when his dau got him to memory clinic but that's another story).
 

jugglingmum

Registered User
Jan 5, 2014
5,479
Chester
Got up this morning feeling there isn't a lot of light at the end of the tunnel.

I didn't sleep well again which doesn't help. Was too tired to do all of the washing up last night so came down to a sink full of recycling. Will have to do it when I got home to night.

Just seems there's so much to do in the little free time I have, so the nice bits of life I do for me will have to disappear again for a while.

It might only take 40 mins to visit mum but that's 40 mins that doesn't exist on the days I work.

Planning to visit tonight but not tomorrow - as there is a 6th form open evening I want to go to tomorrow - son has another year until GCSEs but I'd like to look at this school this year and then take son there next year. So the open evening will actually take up more of my time than visiting mum.

Need to make loads of calls today whilst in work as well.
 

Sarasa

Registered User
Apr 13, 2018
829
@jugglingmum, you really are the jam in the middle of the sandwich, and you are in danger of being squished if you don't carve out bits of time for you. Are there ay other family members who can visit your mum? My sister in law ended up more or less doing a rota for people to visit my brother so she could have time to do all the other things, such as earn a living, while he was in hospital.
The care homes sound positive, and it certainly sounds like sheltered care isn't going to be enough now. Worth looking at the one your friend recommended too.
Enjoy the sixth form visit. I worked most of my life in schools and quite enjoyed casting a professional eye over things when taking my son to see places. Going a year early is good too. My son is severely dyslexic, so I always wanted to talk to the Special Needs Co-ordinator, and that was easier when he wasn't there.
 

canary

Registered User
Feb 25, 2014
11,267
South coast
Ive just found this thread again. Im so sorry jm - I had no idea that your mum was in hospital again.
Just seems there's so much to do in the little free time I have, so the nice bits of life I do for me will have to disappear again for a while.
Yes, I understand this. Youve got a lot going on. I hope you find somewhere for your mum - your ex SW friend sounds a godsend.
 

Sam Luvit

Registered User
Oct 19, 2016
5,651
East Sussex
I used to say “no one is my
First priority all the time”, which meant, that whoever needed me, became number one that day, until someone else needed me

it’s ok to let the hospital staff look out fir your mum, while you make sure your sons future is secure

You do need to steal a few hours a week fir yourself, somehow, you need time to just be JM and not mum, daughter, worker etc ;)
 

Bikerbeth

Registered User
Feb 11, 2019
731
Bedford
Your name is just so apt for you. Yesterday’s post sounded quite upbeat but today’s not so good. It does sound positive about the CH though or the possible alternative suggestion. thanks also for sharing the definition of residential vs nursing as I had wondered too.
I hope you managed to get your phone calls done and that this evenings visit was good
 

ButtercupFields

New member
Dec 25, 2019
7
I’m sorry to hear things are so stressful @jugglingmum. I know how you are feeling and hope things ease up soon. When everyone needs something from you all the time, it’s so easy to neglect your own needs. Try to take some time for yourself to do something you love. And I do know exactly how hard that is to do. The hospital will take care of your mum even when you can’t visit. I hope things are looking a little brighter soon.
 

ButtercupFields

New member
Dec 25, 2019
7
So had a good weekend. Aunt went with us to store on Saturday and didn’t swear at anyone. We pushed her around in her chair. Then Sunday, we managed to take her to church for the first time in months. She didn’t cause any problems except occasional talking when no appropriate, but she is very quiet so no one minds. She used to enjoy the singing and would even sometimes sing along with the older hymns she knows, but seems to have lost that now. She also really likes little kids, so hopefully enjoyed watching them play after the service. However, I don’t really think going to church has any benefit for her anymore. But if she goes, then I get to go, which is good for me.

So after that pretty good weekend, things went downhill on Monday morning. Aunt was very hard to wake up, seemed to be in pain when we gave her a wash and generally more out of it than normal, not standing well, weak. Only thing I could identify was that her oxygen saturation was low. Knew I wouldn’t be able to get her into her wheelchair and into the van to take to hospital, so ambulance called. So now we are in hospital while they do their “altered mental status” work up which basically means “we have no idea what is wrong, if anything, so we will run every test and scan we can think of, but it’s probably just dementia”.

They monitored her oxygen levels overnight to see if she’s dropping low while sleeping and might need supplemental oxygen at night. Also, one good thing of this very useless hospital stay, we got referred to hospice services. Now that I wrote that, that sounds kind of bad. But I’m tired of the hospital merry go round and hospice will have the same goals as me - keep her out of the hospital, keep her comfortable. So hopefully the hospice doctor will say she qualifies and we can get services set up for home.

Really hoping for discharge today. When she’s in the hospital, I’m in the hospital and then kids are neglected and work is missed.
 

jugglingmum

Registered User
Jan 5, 2014
5,479
Chester
Hi Buttercup - I hope things went smoothly and aunt was discharged.

Mon to Wed when I work are hectic so not been on to post

Mini rant - just phoned hospital and they can't give me any info as I need a password, she has been on the same ward for 10 days I've visited and phoned and not needed a password but suddenly I can't have info without a password. I've made it clear I hold H & W POA on all my visits as well.
 

reedysue

Registered User
Nov 4, 2014
4,704
Scotland
Mini rant - just phoned hospital and they can't give me any info as I need a password, she has been on the same ward for 10 days I've visited and phoned and not needed a password but suddenly I can't have info without a password. I've made it clear I hold H & W POA on all my visits as well.
How absolutely ridiculous!
As if you don't already have enough to cope with.
 

ButtercupFields

New member
Dec 25, 2019
7
So annoying @jugglingmum, the whole password thing. Our hospital does the same thing. I always just make it her first name nickname. So she is still in hospital? Is there any update on release date or is she stuck there for awhile? Sorry if you’ve already said, I’ve seemed to have missed it. I hope the stress is not as bad and you are coping ok.

Aunt and I came home from hospital Tuesday evening. I really pushed hard so they would release her. There was really no reason for her to be there. She is just declining, so change in mental status will happen sometimes. Yesterday, hospice came to the house and got her all signed up. The nurse was wonderful. Knowledgeable, caring, and apparently hospice is not just a patient service, but a whole family service. They coordinate all aspects of care. However, I really wish someone had suggested them earlier. She would have qualified earlier and it would have saved us a lot of stress and upset when she was being discharged after a fall in November and had gone from independent mobility to barely standing with 2 people to help in just 10 days. We were running around trying to get a wheelchair and hospital bed while Medicare (government health insurance for elderly) was pushing her out of the hospital by threatening to not pay for her stay anymore. If we had been referred to hospice then, they would have provided all the equipment and home care we needed very quickly. But it was never even suggested. The only reason we have it now is because I mentioned it with this last hospital admission and they sent someone to come talk to me.

So we are starting this new phase in the journey. No idea how long we will be on it. Yesterday, morning with Aunt was the worst it’s been since she moved in with us in July. Too distressing to go into now. Just hoping we don’t have a repeat this morning.
 

jugglingmum

Registered User
Jan 5, 2014
5,479
Chester
To add to my woes today, washing machine has just stopped mid cycle! Fuse has gone before so hope it is the same. Will use neighbours when theirs is empty and they are in and I am in.