Our magic bitter sweet moments 🥰🥰🥰

[sdmhred]

Bitter sweet today.

my sister came with me to see mum and we managed to get her in the car. It was sooo lovely to be back driving round the countryside. We went for coffee and showed my sister some of the sights. Mum thoroughly enjoyed herself.

sadly tho getting out of the car was too fraught for comfort. I got her feet out and she proceeded to try and put them back. It was all a bit too much. She was then whisked off to her supper but was then grumpy as we’re not allowed to stay. I’m back now watching TV and all are content - but a line in the sand that the car is no more 😢😢 I‘m wondering if when I have some leave to hire a wheelchair car and take her for some drives as she does love it ….and I am sure these days of that being a possibility are limited.

Also I am most annoyed with the water company…..for about the 3rd or 4th time in the past 2 years the local water treatment centre is offline and so mum’s nursing home have no water. Bottles of water and wipes are all on hand but how can you run a nursing home without water 😱😱😱 And I know from my work there will be many of my clients who are unable to access the bottled water stations themselves….. a one off I understand….but repeated interruptions…..not good….and they expect me to pay my bill promptly this week!!

 

[Chizz]

Hi @sdmhred
Good that you had a nice day out with your sister and mum.

My wife had a few non-serious falls, where, for example, she reached for the arm of a chair before she had quite got near enough. Maybe it was this, as well as progressing deterioration that she gradually became fearful of falling. It became increasingly difficult to persuade to get into her wheelchair. Then from wheelchair to car became difficult, then at other end of journey from car to wheelchair. Then one day on a trip out, she said she wanted the toilet. In the car park she said said she thought it not safe to get out car (into wheelchair) and after 40 minutes of trying to persuade, cajole, and coax her, she didn't/wouldn't get out of the car. Lots of people in car park approached to "help" without knowing it was a mental not a physical barrier. Outcome was to go back home. I did try again on other occasions, but couldn't go to her singing group or forget-me-not cafe as I'd have had to allow the 10/15/20 mins to put on her shoes and coat, a few mins (5 or so)from house via ramp to car, 40 mins to get her into car, 20 mins drive to group, 40 mins to get her out of car - that's nearly 2 hours before event, and it would have repeated after event. Outcome = since then (which was some while ago now) we haven't been in car.

It seems maybe your mum is going along this route. I had thought about a special hoist one can get fitted in car to lift from wheelchair into car and vice versa, but discounted the number of times it might be used compared with large expense. I hadn't thought about hiring a car/EUV/van that could take a wheelchair wheeled straight into the back via a ramp - no doubt you'll be looking into this, but I'm sure it won't be cheap.
At least not something that would be worthwhile except for a special outing.

Best wishes

 

[sdmhred]

I’m a bit teary today. It was a day for doing a bit of sorting out at home. Much needed but my least favourite thing. Sorting out the chaos of the past month and tidying mums stuff reminds me of all dementia has taken 😢😢

I then arrived for my evening visit and mum was grumpy in a ‘wanting to go home‘ mood. The lovely lady who does the evening games has her day off and it was the same last Tuesday.

she’s also got a nasty hematoma which she went in with but has got worse as her feet haven’t been well elevated. The nurses are on to it…..but it’s set me off again 😢😢

Anyway she settled in bed and has started to snore ….so I will take myself home …..5 hrs work tomorrow 😱😱

 

[Rachael03]

Sounds like it's been a long and tiring day for you. Organising is never easy and must bring up some raw emotions seeing the evidence of all the challenges and changes as you sort.

Hopefully you get some snores tonight same as your lovely mum...I'd think you need them!

 

[jennifer1967]

youve done so well caring for your mum, sorting things out is never easy with all the memories coming back. maybe do something for you.

 

[sdmhred]

Thanks ladies. I’m probably due a good cry and it always does me good - apart from the headache. I think 3 things are stressing me:

1) we haven’t yet got into a good routine with visiting so I never know if mum is ‘free’ or not when I visit. I tried this morning and then they came to wash / dress her which took ages today so I was sat downstairs on my own for ages…

2) I feel we are on ‘trial’ which we are ….so I have the anxiety what if they won’t keep her….back to square one looking for some where else….they are struggling with her anxiety about transfers….I think they’re doing very well….but I see some of the staff looking fed up when she panics…

3] and on the above I think I feel ‘responsible’ for the difficulties - as if it’s my fault 🤷‍♀️🤷‍♀️🤷‍♀️ Crazy isn’t it? It’s all dementia‘s fault….but I strangely feel responsible …….I wonder if anyone else feels that when their loved one is difficul 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️

Shes not generally anxious…only about transfers when she’s tired or stressed…..does that warrant a discussion about anti-depressants 🤷‍♀️🤷‍♀️🤷‍♀️ I would have thought not 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️

 

[Chizz]

Hi @sdmhred - As you know it takes a while for anybody transferring to residential care home to settle; for the staff to get to know them, etc. The staff should have the experience of being able to deal with your mum's anxiety, etc and to know how to calm her. It'll take a while for you too.
I don't think temporary stress of moving warrants anti-depressants, but you know your mum better than anybody else.
How you can get a full sleep.

 

[Knitandpurl]

Thanks ladies. I’m probably due a good cry and it always does me good - apart from the headache. I think 3 things are stressing me:

1) we haven’t yet got into a good routine with visiting so I never know if mum is ‘free’ or not when I visit. I tried this morning and then they came to wash / dress her which took ages today so I was sat downstairs on my own for ages…

2) I feel we are on ‘trial’ which we are ….so I have the anxiety what if they won’t keep her….back to square one looking for some where else….they are struggling with her anxiety about transfers….I think they’re doing very well….but I see some of the staff looking fed up when she panics…

3] and on the above I think I feel ‘responsible’ for the difficulties - as if it’s my fault 🤷‍♀️🤷‍♀️🤷‍♀️ Crazy isn’t it? It’s all dementia‘s fault….but I strangely feel responsible …….I wonder if anyone else feels that when their loved one is difficul 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️

Shes not generally anxious…only about transfers when she’s tired or stressed…..does that warrant a discussion about anti-depressants 🤷‍♀️🤷‍♀️🤷‍♀️ I would have thought not 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️

I certainly feel as if I’m somehow responsible when my OH is difficult in some way, (often loud comments which he seems to think, or not care, that others can hear, that can be downright rude). I also always feel as if it’s my fault when he hurts himself, walking into things, banging his head etc. even when he’s just told me quite emphatically that he can “see it”, immediately prior to the collision. With regard to some of the staff showing on their faces their irritation at your Mum’s panic over transfers from bed/chair etc. I wouldn’t worry unless that is coming over in ‘voice’ to her. I am sure she will not notice changes in their facial expressions (probably not voice either to be honest, too caught up in her own anxiety). My Mum was just the same, and it is very difficult to always hide how irritating it can be when we know we are not going to let her fall, and the sadness that the it is the anxiety that is stopping car journeys to nice places etc. rather than a ‘real’ physical problem. Reading your thread about your Mum I would be very surprised if the Home is not happy to keep her, she comes over as a thoroughly nice person, which as we all know is not always the case.

 

[sdmhred]

Thank you @Knitandpurl - your words are reassuring and comforting.

We are very fortunate that with mum’s vascular dementia she has so far retained much of her lovely personality. I hope the carers notice that even when she has struggled and found it difficult she always says ‘thank you‘ to them….and I know she means it even if she hasn’t enjoyed the experience!

Today has thankfully been so much better. Mum’s leg has been dressed and improved with good overnight elevation. She chose to stay in bed and ‘rest’ which I think has done her good as she has been very chirpy and with it. The staff have realised I think she needs more ‘downtime’.She presents initially well but her brain is very damaged - she can hide it well with good hostessing and well engrained and intact social skills.

She even had her toe nails done and the chiropodist reported she was ‘fine’. I shall pay him a bonus!

I managed a morning at work. Horrified that no-one has informed my MH clients I have been absent. Goodness knows what they will think when no-one has been in touch for a month. Time to look for new work in the new year

Pic is the other side of the snakes and ladders board - I actually won at Ludo today!!! Oh and I have included last nights bath water …….48 hrs no water for mum, I had it at home all along …..all normal…until last night 😱😱

 

[jennifer1967]

Thank you @Knitandpurl - your words are reassuring and comforting.

We are very fortunate that with mum’s vascular dementia she has so far retained much of her lovely personality. I hope the carers notice that even when she has struggled and found it difficult she always says ‘thank you‘ to them….and I know she means it even if she hasn’t enjoyed the experience!

Today has thankfully been so much better. Mum’s leg has been dressed and improved with good overnight elevation. She chose to stay in bed and ‘rest’ which I think has done her good as she has been very chirpy and with it. The staff have realised I think she needs more ‘downtime’.She presents initially well but her brain is very damaged - she can hide it well with good hostessing and well engrained and intact social skills.

She even had her toe nails done and the chiropodist reported she was ‘fine’. I shall pay him a bonus!

I managed a morning at work. Horrified that no-one has informed my MH clients I have been absent. Goodness knows what they will think when no-one has been in touch for a month. Time to look for new work in the new year

Pic is the other side of the snakes and ladders board - I actually won at Ludo today!!! Oh and I have included last nights bath water …….48 hrs no water for mum, I had it at home all along …..all normal…until last night 😱😱

are you where the water has gone off anmd they are giving out bottled water?

 

[sdmhred]

Yes, we‘re there! I’m very cross with Thames Water. The local water station has broken 3 times in the past 12-15 months so is clearly needing repair.

what makes me more annoyed is their lack of delivery for bottled water. The home didn’t get a delivery for 24 hours!! And my work clients who can’t drive to the bottled water stations….well - nothing!

 

[jennifer1967]

Yes, we‘re there! I’m very cross with Thames Water. The local water station has broken 3 times in the past 12-15 months so is clearly needing repair.

what makes me more annoyed is their lack of delivery for bottled water. The home didn’t get a delivery for 24 hours!! And my work clients who can’t drive to the bottled water stations….well - nothing!

they should be on the priority list.

 

[sdmhred]

Perhaps the most classic yet…..mum on the phone to one of the 2 friends who faithfully keeps in touch. He does not have dementia as far as I am aware but is a little poor with memory.

They were discussing grandchildren and mum tells him I am busy producing them for her 🙈🙈😱😱 Fine chance as a carer 🤣🤣🤣

So I hope he forgets or the gossip will spread out ……to the one or two other friends 🙈🙈

 

[jennifer1967]

Perhaps the most classic yet…..mum on the phone to one of the 2 friends who faithfully keeps in touch. He does not have dementia as far as I am aware but is a little poor with memory.

They were discussing grandchildren and mum tells him I am busy producing them for her 🙈🙈😱😱 Fine chance as a carer 🤣🤣🤣

So I hope he forgets or the gossip will spread out ……to the one or two other friends 🙈🙈

your secret is safe with us!!!! 🤣 🤣 🤣🤣🤣🍼👶

 

[Rachael03]

Perhaps the most classic yet…..mum on the phone to one of the 2 friends who faithfully keeps in touch. He does not have dementia as far as I am aware but is a little poor with memory.

They were discussing grandchildren and mum tells him I am busy producing them for her 🙈🙈😱😱 Fine chance as a carer 🤣🤣🤣

So I hope he forgets or the gossip will spread out ……to the one or two other friends 🙈🙈

And here I thought it was bad when my MIL occasionally makes a joke about potential grandchildren after a few wine in her!

You'll have to go out of your way to have a glass in hand when you're in company to curb any rumours lol 🤣

 

[sdmhred]

Yes, I shall have to be seen with wine, unpasteurised cheese and raw fish 🤣🤣🤣

And hold my wee in….I’m always going …but that’s how I worked out my SIL was pregnant 🤣🤣🤣

 

[jennifer1967]

Yes, I shall have to be seen with wine, unpasteurised cheese and raw fish 🤣🤣🤣

And hold my wee in….I’m always going …but that’s how I worked out my SIL was pregnant 🤣🤣🤣

and liver and loads of gaviscon!!! 🤣 🤣🤣. its all coming back to me!!!

 

[sdmhred]

Turned up tonight to a mass hysteria sundowning - mum had kicked it off with I want to go home after dinner ( her regular time wherever she is) and that had set off them all - apparently tears all round 🙈🙈😢😢 I’ve never seen mum cry and I think it must be a very rare occurrence but there were definitely remnants of tears on her face 😢😢

But the evening care companion is super. She had them all playing balloon tennis with a break for hot chocolate and cake….smiles and laughter all round then…….

There is one poor lady on mums floor tho who I think is bed bound …..we hear her crying out most evenings 😢😢

 

[sdmhred]

So our planned family visit has gone pear shaped today. Mum had declined to get up and was happy in bed as I arrived. Knowing my brother (who had driven to the wrong nursing home 🤷‍♀️🤷‍♀️😱😱) was on his way I quickly started dressing her and got her on the commode….she was in mid poo as they arrived…..which I got told off for 😱😱😱 and told to leave 🤷‍♀️🤷‍♀️🤷‍♀️ Which I duly did am an now back home rather sad not to have seen my niece and SIL who I get on with…..

Hes usually very good so I imagine the stress of being a fairly new Dad and having a mum with dementia…..but muggins here who has witnessed and wiped all the poos for the pasT two years …..well I just have to get on with it……..us primary carers far to familiar with the nitty gritty of d!!!

 

[sdmhred]

Turning quite farcical - my brother invites me back to make the peace but then the home say she can’t have so many visitors as protected meal time…..so off I am sent for the second time in a day 🙈🙈

Im all for protected meal times but does that mean we can never share a meal together again? 😢😢😢 eating together as a family is very importsnt to us 😢😢😢 I guess I will have to ask permission if we are allowed a picnic in her room …or make sure we have one before the 5pm supper time 😬😬

Gosh having dementia is the pits some time😢😢