Unidentifiable problem / communications

[ManjiB]

Greetings Everyone - I would like to share this with you and in particular those of you who are carers.

A while back I posted on here about a challenge was faced as carers and got a tremendous response - you can read about that here << Click here >>.

Today I would like to do a kind of update but start a new thread because I want to generalise it.

Mum was doing really well and things were looking up. We had a few good weeks where everything was lovely and with spring season we were looking forward to even better times ahead.

Out of the blue (I say out of the blue, but it probably isn’t i.e. we will have done something that has triggered this), Mum has suddenly started to display signs of discomfort when she is being changed. Changing time is problematic anyway as it is “invasion of privacy” and most people are not comfortable with it. This is a new level of discomfort, and we just don’t know what it is that is causing it.

At other times, Mum is fine - she is sitting with me as I write this and she is perfectly fine, trying to get m y attention, listening to music and seemingly very comfortable.

Those of you who have been following our story may know that we just don’t know what Mum is saying as she is non-verbal and so far pictures and signs etc. have not worked in the main. We do occasionally hit the nail on the head and understand what she is saying and experience has helped us to work out what the root cause of the problem is. But as her recovery evolves she presents us with new challenges and this is the latest one.

I am not looking for answers here, I am merely doing what I myself might advise others to do if they were posting this - I am putting it on paper and getting it off my chest. I am hoping by doing so it will be a load off my chest and it may somehow lead to some inspiration and help us troubleshoot the issue. I already (I should say we) have ideas it might be related to a cream / ointment we have been applying to her skin. It is likely this has imbalanced her system and she is struggling. I am pleased to say I have stopped the ointment treatment and so the potential issue should ease and clear once the system flushes out the “poison”.

The last two nights have been very stressful for Mum and for myself and my co-carer, my sister as we have had to try and calm her down in the middle of the night and very loud shouting is so very amplified in the dead of night

There you go - brain dump over.

I will now poodle off and see to my supper and also prepare Mum’s supper which she will get after I’ve had mine

The point of this post?
Get it off your chest and let the healing begin.

Namaste|

[Janetb]

You are very welcome to download here. We will listen and respond if we have anything useful to say. It is sometimes useful to get our thoughts in order by writing them down.

[Bobbi]

@ManjiB

You have understood really well how to use this forum. Thank you for contributing.

I want you to be sure that we are all here for one another come rain, hail, or shine. We have one another and we have this Forum, we are lucky.

You are working through today’s problems sometimes finding answers sometimes not.

Just sharing, both the bad and the good times can be a great help to both ourselves and others.

Reading that you are not alone can give you what you need to cope.

Wishing you and your mother a brighter tomorrow.

keep on keepin’ on

[Susan_Jane]

Thank you for your post and feel free to have rant and unload your feelings anytime and hopefully someone on here will be able to respond. This is why this community is so valuable.

As they say “A problem shared is a problem halved”, so feel free to have a rant or if you need a shoulder to cry on or if you would just like share an achievement, however big or small. Always remember you are not alone.

Best wishes and regards

Sue

[Mrs5K]

@ManjiB this is a great space to get things off your chest & hopefully someone can provide some inspiration too. We all have a listening ear & are happy to support.

Is it just at changing time your mum has the issue? Does she, for example, also have discomfort when she is sitting. Msybe it doesn’t manifest then but can be felt more when you’re changing her. The reason I ask this is because I was getting quite sore from sitting down & was starting to get pressure sores…not necessatily because I spent too much time sitting down but because I have lost a lot of weight & have no padding any more. I bought myself a special cushion to sit on…for someone with a bony bottom (can’t think of the name of it right now) & that has made a big difference to my comfort levels.

Could she have an infection that’s causing the discomfort?

Of course I have probably wandered off in the wrong direction completely so please feel free to ignore.

I hope stopping the cream helps / resolves the issue.

Best wishes

Ann

[ManjiB]

Hello everyone - I don’t know if there is a “Reply to All” on here, so I’ll do it the long winded way as I appreciate all your comments, feedback and encouragement

Thank you @Janetb , @Bobbi , @Susan_Jane and @Mrs5K for your various comments and suggestions.

Sometimes it takes a while to get to the bottom (no pun intended) of what ails Mum but we usually get there one way or another. This is a tricky one as there are no obvious external signals - all appears fine until she decides to kick-off. And it has come out of the blue (other than the meds) which makes it harder to troubleshoot. We always ask what has changed and this usually gives us a possible reason or angle to persue.

All things considered, we are not too badly off.

Thanking you all.

[EmeraldEyes]

Just a thought, could your mum maybe have some bowel/urinary issue. Or perhaps some other issue/discomfort within that area around the pelvis, pubic bone, hip area; A joint issue when discomfort or pain are most likely to be felt whilst moving her around . . . arthritis rearing its head as she has to sit so much. Maybe ask her if her bones hurt in that area. This keeps the question simple enough for for a nod or shake of her head for yes/no.

Lorraine

[ManjiB]

Yes Lorraine - that is a possibility, though it has been some time since she last had UTI. UTI was a major problem in the days when she had a catheter but thankfully this was removed a while back and since then there have been no instances of UTI.

Bone/arthritis/muscle contractions are all possibilities as she does not move about other than when she is being cared for or when we can give her a bit of physio/massage.

Today was better and perhaps with the steroid cream no longer being applied, this may be coincidence, or it may have been the culprit.

One rather strange thing I noticed today which is she seems to get stuck in a groove when she is complaining or asking for help i.e. she will start calling for help and normally once you attend to her or approach her to let her know she will be seen to she stops, but in the last couple of days she just carries on as if the “off” button is not there. Her brain is not telling her she can / should stop. I am having to distract her as she doesn’t seem to know she is still calling - something new that I have not seen before.

It’s a bit like when someone gets hysterical and you slap them to get them to stop.
I’ll keep eye on this.

[Pamp]

Although it is reassuring to know others understand and fel rhe same as me, I have yet to find someone who has experienced, late onset focal seizures as I have. They can be frihtening. Isthere perhaps a similar forum for epileptics…

[EmeraldEyes]

It could be the onset of demetia or Alzhimers, that is a possibility at her age and with having a stroke. That’s one thing I am very mindful of as it’s genetic in both mine and my husband’s family. And of course strokes are common with those and the mind deteriorates. Does your mum have a pressure sore matress?

How are you and your sister coping with this. You are such a caring person and yoour mum must be so proud. But I do hope you are getting enough me time to do your own thing. To get out and meet up with friends, that is so important for your mental health. So take good care of yourself ManjiB

Lorraine

[Mrs5K]

It may be worth getting her tested for a UTI just to rule it out.

It may be, as @EmeraldEyes says that there may be some alzheimers starting. I hope mot but is worth thinking about given her age & stroke history

It does seem like something is distressing her. If she isn’t used to meds perhaps it could be as simple as her telling you she doesn’t want you to use the cream.

I totally agree with @EmeraldEyes in relation to taking time for yourselves too. You do an amazing job but downtime is important too.

[Bobbi]

@Pamp

Difficultyies

@Pamp I hope you find your way. This forum can be a good place to get ideas, answers and friendly support. keep on keepin’ on

If you need answers it might be a good thing to start by talking with your doctor, I am not qualified to offer diagnosis. I can only share my experience.

my best wishes go to you, Pamp

[ManjiB]

Hi Lorraine - I hope it is not dementia or Alzheimer’s but I do feel her bone density and muscles will not be as strong as they might otherwise be if she was more mobile than she is. There is little we can do on that front. She has a high pain tolerance threshold and if she has been putting on a brave face it may now be getting to the stage where even she might have to admit defeat.

She does have a pressure sore mattress and we do try to turn her on her sides and back to relieve continued pressure. That said, with her being incontinent (stroke) the bottom does suffer a little bit from being exposed to a soiled pad.

We did attempt to try to get her to sit on the commode, but I think it may have become too much for our professional carers and somehow, that activity was stopped. In my view the short time she was using a commode was beneficial as it meant she (her body) was functioning more as nature intended rather than artificially. Right now, having to do the bodily functions in bed is not to her liking and she does struggle - possibly weakened muscles and not being helped by gravity if that makes sense.

I don’t know if Mum is proud of us or not, but both myself and my sister have been a bit stupid with regards to our approach to caring for Mum. Speaking for myself, it was something I was kind of expecting to do and was already doing, but my sister might have bitten off more than she can chew. By that I mean she may have been naive and unrealistic in her expectations of how this might turn out. I have a feeling she might have expected Mum to be up and running in a few months and also she had expected to get more help from family and friends than has turned out to be the reality. So for one reason or another, we have effectively been housebound with the occasional trip to the shops or even rarer trip to the GP etc. Consequently, both our healths are probably suffering and there are signs we are beginning to flag. But due to being thick skinned and stubborn, we will likely continue along this path (as mad as it is) and hope to come out in one piece.

I can be more selfish than my sister who simply cannot bear to leave Mum alone for more than half a day and she cannot bear to see Mum suffering - even when I am giving “tough love” therapy e.g. physio which causes Mum to complain because she can feel the stretch and doesn’t want to be pushed further, she will say don’t do that!! I have to remind her no pain no gain, but it doesn’t wash.

So mentally and physically we might already be on the downward slide but stubbornness and “I’ve started, so I’ll finish” approach we will likely carry on.

I am lucky to have some friends who have remained in touch and who I can turn to for a chat or support. In fact, in January a friend of mine treated me to a night out. It was a lovely surprise and I was so touched by it - the time and trouble taken to research, organise and execute the whole thing was above and beyond anything I had expected. The beauty of it was she remembered something I had mentioned when we used to work together many years ago and she acted on that. It brought tears of joy.

At the end of the evening she said what you are saying, which is to take care of ourselves and made me promise I would do more. She checked up on my last week to see if I done what I said I would. Sadly I had not

I feel so bad having let her down. Somehow I think she will understand.

Thanks for reading this and thank you for being my friends ,

[EmeraldEyes]

ManjiB, have you considered respite care, even if only for week. It really is something to consider. I don’t know myself how you go about getting that set up, but if phone you the Stroke Association, I’m sure they could help you.

And don’t even start considering it is selfish, if you and your sister were to fall ill, where would that leave your mum? You have to look after yourself first! If that means a night out on the town to blow off some steam or a week away in a favourite either here or abroad, you’ve just got to do it.

I remember in the run up to my stroke, I was continually flitting between 3 homes. My in-laws house caring for my mother-in-law with cancer, visiting my father-in-law in a care home because he had Alzheimer’s and we didn’t want forgetting us or feeling abandoned. And I had my own home where I had 2 children both going through O and A levels and my hubby working full time. I know how much I neglected myself and it’s no wonder my head went bang! You don’t see it yourself, you think you are coping so well, even proud that you can pack so much into a day, every day. And that’s just it, you don’t see it until it’s too late. I certainly can’t do that anymore. Don’t let that happen to you.

And everyone is green and naïve when they first start caring for a loved one, none of us were born with the knowledge and insight, not even new mums. The only difference there is the size, a baby is much smaller easier to bathe and change than a full grown adult. You wing it or fake it until you make it half the time.

Are you attending any local carer groups or get to go to work, if only for a change of topic? I can’t help feeling you are becoming isolated and that’s not good

Lorraine

[ManjiB]

Hi Lorraine - thanks for the advice and sharing your own experience.

Even though I/we are aware of what we should be doing wrt looking after ourselves, it is proving to be a bit difficult. With Mum being so challenging and experiencing stress and bruising through poor handling techniques and inability to communicate with third party carers, the thought of leaving her to be cared for by others is unthinkable.

With her being an adult baby, this is definitely a bigger challenge and which the third party carers find very difficult, hence we have to be on hand.

This is a double-edged sword.

Having declared it as a 24/7 care plan, we do not attend any carer groups and I gave up my job to look after Mum. I haven’t tried to find a job due to the hassle and the risks. Funnily enough before I became a full time carer I used to work ad-hoc and did some voluntary work to get out and about.

I am not convinced I/we are isolated, though it is partly through choice as we “banned” people who were “ignorant” and added to the stress. There are few close friends of Mum who come to see her whenever they can and to their credit, they persevere even when Mum “ignores” them.

I am very much in touch with my friends via e-mail and text and occasional phone calls, but haven’t been on the golf course - maybe soon

Thanks and don’t worry - it will be alright in the end.

[Pamp]

Why I keep appearing as Psmp I have no idea, my intention was Pam. Dont know how to chang eit. Th reason for this post is that I am intereste in the online chats you tried toset up, if there was one at a suitable time. arounf 3pm ish. I am no even sure i would manage to geton, but I could try.Be really nice to meet others with similar experience.

[Bobbi]

@Pamp

I have a feeling that the screen name Pam will already be taken.
You would need to try a variation, something not already used.
I bet if you message @Anna_Moderator she will be able to either get your name changed or suggest some alternative.

These moderators have all sorts of super powers though despite numerous requests they haven’t provided me with any winning lottery numbers, yet.
I’m not greedy, a small win of a few hundred thousand would be useful. I’d squeeze it into my bank somehow.

As they say, ask and ye shall receive, though not in my case, unfortunately.

We might be able to set up an afternoon meeting, any particular day?

[Pamp]

Tuesdays an d thursdays are usually ok, however as my children take in turns to work from here to giv my husband some free time, nothing is guaranteed. Thursdays are probably the best bet. Assuming the NHS dont wnt to see me again.

[Pamp]

You are probably right about the name pam and they just added the p from my surname. makes sense

[Bobbi]

I can set up an online meeting at the drop of a hat. The main difficulty is getting people together at an agreed time and on a given day.

I can post a thread to see if there are others interested in an online session. I can’t guarantee there will be interest, but I’ll give it a go if you like.

I’ve held meetings during the daytime, in the evenings and conducted one on one sessions for people new to it who just wanted to try it out.

My sessions are informal with no fixed agenda, just a chance to say hi, swap experiences and so on.