Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[DottyD68]

Thank you for your kind words and sentiments Sundaygirl. You are totally right - she has no memory of who visits and when (which is part of the reason for other family visits not being very frequent - along with the distance). I know it is my issue, but I think any sole/main/local/regular visitor in this situation would feel similarly. Doesn't help that my siblings really don't (try to) understand/empathise what it is like in my position as they have the luxury of distance and disengagement. They think I bring the stress on myself - why would I do that?

I think the everlasting and overwhelming  nature of this disease takes it's toll on the carers over time. I can't even remember what my Mum was really like before all this started.

Thanks again X

[sheila99]

Would it help to leave things with the staff that they could give to her regularly? Cards, short note, photos, her favourite chocolates etc. That way you'll still be in her mind and she'll know you're thinking of her.

[DottyD68]

Thanks for your thoughtful ideas Sheila99.

To be honest she is well past that. I think she will be oblivious to not seeing me (which is good). I think it is more my issue, plus her health has deteriorated in the past few months after 5 years of being pretty stable. So in all honesty I am fearing she could pass at any point (she is 91) although she is not in end of life yet. I am probably catastrophising as everyone else seems pretty chilled - then again they are not the "goto" person. I'm just tired with it all.

Thank you x

[SundayGirl]

I don't know how often you visit your mum but I think you need to reduce the frequency of visits - for your own mental health and wellbeing.

I bet you leave the care home more worried and anxious than before you went in.   

Your mum is in a safe secure space with people around her all the time to ensure that she's alright.

I once read on Alzheimer's UK that a lot of people visit their parents/partner frequently because they're worried about how it would look to everyone else if the went less often. They assume that people would think they don't care where it's actually the opposite.

If I've overstepped the mark with that last comment, I truly apologise. But you need to look after yourself. Ask yourself if your mum would want you to make yourself ill. I bet the answer is no.

 

[DottyD68]

To be honest Sundaygirl I don't visit as often as some people do their parents. Usually once a week but I've increased it to twice a week since her TIA has I kind of need to see for myself what the situation is now. I have access to an app where the carers record what she has eaten, drank etc throughout the day. It is really useful but doesn't give the full picture. I suppose I have been thinking that if this is near the end, would I regret not having seen her while there is still a little bit of her in there. It is so difficult to get a balance. Like I said previously, if my siblings were more actively involved I think it would be easier to step back.

You are absolutely spot on with what you say so no offence taken. One of the 1st things people ask is "how often do you visit?" which naturally makes you feel defensive. Plus I feel very responsible for her. All of this madness started at the beginning of Covid when I was literally my Mum's bubble. We live in Wales so none of my siblings (who live in England) could legally visit (we were brought up to be rule-abiders) so I have been heavily involved all the way through, mostly on my own. All her friends contact me for updates etc though funnily enough family never actvely do! It is a very isolating experience despite coming from a big family. I appreciate people find it a difficult and uncomfortable situation but so do I but being the nearest I have to deal with it head on.

All being well I will have a loooong break from visits soon and that will do me the world of good.

Thanks for the virtual hug. It just helps writing it all down and out of my head so I appreciate anyone reading/responding. X

[SundayGirl]

You're right Dotty. It's a really difficult time and I don't think anyone has the correct answer as to what is the best thing to do. As you've found, things can change really quickly.

You really do have to look after yourself though so your trip sounds as if it's come at just the right time to recharge your batteries. 

[Minusminnie]

All her friends contact me for updates etc though funnily enough family never actvely do!

This in itself although well meaning from friends can be exhausting. I’ve been in a similar situation recently. Eventually whoever I replied too I asked them to pass on my texts so everyone was kept updated. It got down to a few small groups. Some were in an app group together. I don’t use apps. Are you able ask your mums friends to do something like that ?

[DottyD68]

Hi minusminnie,

Thanks for your reply. Yeah I can't go out for a therapeutic bike ride sometimes without someone ringing! They are all lovely and very supportive to Mum (& me). I did set up a WA group with them when she went into the carehome but there are different levels of technical savyness  They are all in their 80's. Some don't know how to use WA, some just don't use it and some are just losing it. I have tried to whittle my contacts down to 2 or 3 main contenders to pass on news but they tend to check in with me after a visit to find out what is real and what my Mum has made up!!! Sometimes I think I'm in the middle of a really bad experiment. Amongst all the gloom I do try and focus on the funny moments - I may write a book. X

[CLKD]

We could all add to your book!

I doubt whether your Mum will pass quickly.  When U fed her ice cream, were U doing that for yourself or for your Mum?  It's important that your Mum is kept hydrated and turned regularly to prevent bed sores: that is a legal requirement.  The Home where Mum stays knows not to phone after or before 9 at either end of the day, as living where we do, we are not going to get out of bed in the early hours to dash over. That is why Mum is 'in care'!  At this rate we will age faster than she does anyway  [98]

Get yourself away DottyD68.  All Mum's friends went to see her: once : nosey lot! apart from 1 who visited weekly and they went out 4 a meal on a regular basis.  Fortunately none of them contacted me or my response would have been "Go C her yourself".  Now Mum doesn't know what day it might be! 

I expect an update in the 'holiday' section on your return ;-). 

I did try to get the Nurse to update me weekly ......... that didn't work.  The Home has had 14 Managers since the week B4 lockdown!  The last couple have been really good but then they leave, I think that they are using the experience to put onto a CV when. they apply for more skilled jobs which pay more.

[DottyD68]

Thanks CLKD

The carehome has been excellent from day one. They are constantly providing drinks and encouraging her to drink (& logging it all on the app). They encourage her to get up and dressed everyday and move her to the lounge - even if that means hoisting her - she likes to be around people (even when she is asleep!). Then they adjust her position on the chair throughout the day to prevent sores.

Sorry you haven"t had a great experience with your mum's carehome. 98? Wow! I have had the same Manager since Mum moved in over 3 years ago and many of the original carers are still there. I have good relationship with them all which helps as I know how difficult Mum is with them.  The app works really well and saves me phoning unless there is an issue and they are very proactive with resolving any issues. I know I am very fortunate that she is so well looked after compared to some places. I should just stop moaning 

[CLKD]

You moan away!  This is your situation and sometimes 'getting it out of the brain' helps to enjoy other aspects of our life!

R U packed yet ?

[DottyD68]

You are right - it does help.

Funnily enough....started  "gathering things" yesterday and seeing what I need to get! I have lots of lists. Got 2 weeks to go yet but for me the build up is part of the trip.

[CLKD]

4 me it's getting everything ready in case I go into melt down in the days prior to going away 

[SundayGirl]

If only there were a 'coping with dementia' handbook that listed just what was going to happen and when. Unfortunately, we all have to muddle through as best we can as each case is so individual both in the patient and the knock on effect to the family.

It really does help getting it all off your chest. I hope that getting all your stuff together for your trip helps take your mind off things too.

[DottyD68]

Yes, sounds silly Sundaygirl but the fact I've actually started pre-trip "gathering" is a good sign. Before yesterday I couldn't even contemplate it. I'm getting there. Having an offload has definitely helped get some perspective. Thank you ladies X