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Taking the next "care step" doesn't feel any easier.

Muttimuggle

Registered User
Dec 28, 2021
245
0
I made the decision that my mother needed the intervention of a second care slot. I am not sure if my mother really wants this particularly as she has to pay for it...but I have agonised long and hard about this and she seems to be in some sort of agreement(for the moment) now. The reasons for my decision to instate a second 30 minute care slot into her day are 1) so that she can be able to be dosed 2 sets of medication which are best kept apart 2) because she seems more confused and forgetful of late 3) because I am again her sole family carer as my critical and invisible brother and his wife have taken off for another 3 month holiday on another continent, 4) because I sufferer of long term chronic pain and dysfunction which limits me.

My decision has been difficult, much like the first one felt when I instated the first single care slot , even though the memory clinic consultant urged me(and my mother) to go ahead and do what I thought necessary. My brother and his criticism and maybe denial of the situation and maybe also my mother's ability to practice hostess mode when she sees him have made things very difficult.

The problems, setting aside my difficult brother, which I have arisen in my mind about my plan have been, firstly, that I have to rely upon services who do not always get it right either. Over the past 6 weeks my mother has been receiving care from her normal agency at tea time and then also has had a "bedtime slot" provided free by the City Council which follows her hospital stay. This latter care only lasts 6 weeks and then finishes. One of the council care carers gave my mother the same 7 tablets which she had received at tea time from the agency carers instead of the 2 bedtime slot medications she was supposed to give! My mother takes some dangerous stuff including Edoxoban. At midnight the paramedics came out to her and she had to be admitted to hospital overnight because of the seriousness of the overdose!! Luckily she "got away with it" but the council care team did not seem to understand my concern and wanted to send the same carer back the next night!! (which I didn't allow). Less seriously within this same 6 weeks her agency, for whom she pays, once dosed the tea time and the bedtime slot tablets together and then another time failed to turn up until I alerted them about the mistake. What I am saying here is that I feel I must substitute my own efforts to deal with my mother alone for efforts to keep checks on the care agency. I know no-one is perfect and I am not asking ever for that. The error with the double dosing was the worst but it wasn't with the agency who will now be employed to do both of the care slots.

Then there is the problem about the cost incurred to my mother who doesn't want to pay(but can...for the moment) and the worry about the retribution which might come from my brother on his return. On Monday Mum's Memory Clinic Nurse came out to Mum's house to speak with both of us. She knew my situation and she managed to convince my mother that instating the extra care will be the best thing and made sure my mother knew that the downside is that she will have to pay for it. And 30 minutes is expensive as compared comparatively to an hour, because the travel of the carer is a large part of the expense. But I can't think of another way round it anyway.

So decision made. Plan ready for action but it still doesn't stop me awaking myself in the night with the words which arose somewhere from my subconscious - "I don't want to do any of this!". It also is all wrapped up in my chronic pain and my chronic pain is wrapped up in it. I am lucky to be on an NHS pain management course specifically concerned with Pain and Self Compassion. I am learning where my origins to pain and my connections to pain come from. I am grateful for this.

So I am wondering- Is each new care step as painfully difficult as this? Must I go through it all again with the next intervention? How do I get mentally stronger to deal with it? Thanks if you read this far. I am mentally processing(again) in writing it down.
 

Starting on a journey

Registered User
Jul 9, 2019
888
0
With you all the way on this. I live with and look after mum 24/7 and I can’t even get over the first care hurdle!
As for tablets …..last night I saw her take her tablets….I wasn’t looking so not 100% sure, she then says she hasn’t taken them and wants her tablets no mum, no
Then this morning she didn’t take them out of her box, but I did give them to her. Another step on the slope. I can understand the tablets..taking 7 a day must be horrid!
I think in your case you have to be kind to yourself and get help in when and where needed. You are facing challenges learning to manage your pain and that takes time and energy.
Forget your brother, he has obviously forgotten mum when away.
I wouldn’t want that carer again either, edoxaban is not to be messed with
 

thistlejak

Registered User
Jun 6, 2020
242
0
You are doing the right thing - what your mum needs (even if it is not what she wants!) and as far as your brother is concerned I would just ignore him and his wishes, he does not count if he absents himself for months at a time. It is your mum's money to be spent on what she needs. His 'share' doesn't come into it until your mum passes away.

With regards to tablets getting mixed up , can you get the GP to prescribe them in a dossett box - there should be no mix up then as tablets have their own 'slot' - morning, midday, teatime and night and you have to break the seal to get them out.
 

DreamsAreReal

Registered User
Oct 17, 2015
358
0
Aww, @Muttimuggle you and mum are having a rotten time of it. I’m sorry 😢

I can’t really give an answer to the questions in your last paragraph because like so many things with Dementia, “it depends”. I think so much depends on how you feel at the time (and your health), how your pwd feels and their behaviour, and how the support services are working. Sometimes I felt very strong and capable and other times I felt close to collapse. Between those extremes, I mostly felt out of my depth, but just about afloat! Your chronic pain will make everything feel even worse, so I hope your course helps with this.

A few things that helped me: being able to get away from pwd when I really needed to (not a holiday, just being able to go home early or even not visit on a particular day if I felt too fragile), learning as much about dementia as I could, not micro-managing her over every little thing, keeping a diary, venting on here, and recently making an effort to be kind and patient with her and not keep reminding her of what she can’t do. Just sitting with her instead of trying to find activities she can’t understand. The more content she is, the easier she is to be around (I’m not pretending this is easy, though!).

The carers will never be fault-free and sometimes they can be infuriating but try to learn to let them get on with it, as much as possible and take some of the load off your shoulders.

Mum died very suddenly 12 days ago and I’m so glad I had been making an extra effort with her in the last few months.
 

canary

Registered User
Feb 25, 2014
18,483
0
South coast
I think it is hard every time you take the next step along the caring route, but you hav to go with what your PWD needs, not what they (or other family members) want.

You are the one at the "coal face" and you know what you mum needs.
I think it is harder because two agencies are involved and things have got confused. Once you have only one agency and the care plan is laid out so the carers know what they are doing it will be much easier.
 

jugglingmum

Registered User
Jan 5, 2014
6,309
0
Chester
I never told my mum she was paying for carer's as I knew she would object and make it more likely she rejected them - given she didn't think she needed them. I suspect your brother would tell her she was paying anyway so probably not an option for you.

They were initially brought in for meds as my mum was clearly not taking tablets correctly.

I think trying to distance yourself and manage your mum's needs, not her wants make it easier.

My mum was clearly not capable of understanding what she could and couldn't do and so I had to take charge (I never wanted to be a carer and it took me a while to come to terms with this label)
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
With you all the way on this. I live with and look after mum 24/7 and I can’t even get over the first care hurdle!
As for tablets …..last night I saw her take her tablets….I wasn’t looking so not 100% sure, she then says she hasn’t taken them and wants her tablets no mum, no
Then this morning she didn’t take them out of her box, but I did give them to her. Another step on the slope. I can understand the tablets..taking 7 a day must be horrid!
I think in your case you have to be kind to yourself and get help in when and where needed. You are facing challenges learning to manage your pain and that takes time and energy.
Forget your brother, he has obviously forgotten mum when away.
I wouldn’t want that carer again either, edoxaban is not to be messed with
Thank you. I would never cope if I lived with Mum. Getting in care and getting a diagnosis all tied in with her mistaking of tablets- mostly taking them twice. She would argue with me that she hadn't done so when the evidence was there to see....and it is all understanding with short term memory loss isn't it? She really believed she hadn't taken them but could not explain their disappearance.
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
You are doing the right thing - what your mum needs (even if it is not what she wants!) and as far as your brother is concerned I would just ignore him and his wishes, he does not count if he absents himself for months at a time. It is your mum's money to be spent on what she needs. His 'share' doesn't come into it until your mum passes away.

With regards to tablets getting mixed up , can you get the GP to prescribe them in a dossett box - there should be no mix up then as tablets have their own 'slot' - morning, midday, teatime and night and you have to break the seal to get them out.
You mean blister packs. Been there, tried that. She overdosed herself or sometimes missed a dose. Thank you.
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
Aww, @Muttimuggle you and mum are having a rotten time of it. I’m sorry 😢

I can’t really give an answer to the questions in your last paragraph because like so many things with Dementia, “it depends”. I think so much depends on how you feel at the time (and your health), how your pwd feels and their behaviour, and how the support services are working. Sometimes I felt very strong and capable and other times I felt close to collapse. Between those extremes, I mostly felt out of my depth, but just about afloat! Your chronic pain will make everything feel even worse, so I hope your course helps with this.

A few things that helped me: being able to get away from pwd when I really needed to (not a holiday, just being able to go home early or even not visit on a particular day if I felt too fragile), learning as much about dementia as I could, not micro-managing her over every little thing, keeping a diary, venting on here, and recently making an effort to be kind and patient with her and not keep reminding her of what she can’t do. Just sitting with her instead of trying to find activities she can’t understand. The more content she is, the easier she is to be around (I’m not pretending this is easy, though!).

The carers will never be fault-free and sometimes they can be infuriating but try to learn to let them get on with it, as much as possible and take some of the load off your shoulders.

Mum died very suddenly 12 days ago and I’m so glad I had been making an extra effort with her in the last few months.
Oh DreamsAreReal - This must be a very sad time for you. You sound to me like you were a very kind daughter...and an honest one too. Your insight from the "other side" is making me think. xxxx
 
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Muttimuggle

Registered User
Dec 28, 2021
245
0
I think it is hard every time you take the next step along the caring route, but you hav to go with what your PWD needs, not what they (or other family members) want.

You are the one at the "coal face" and you know what you mum needs.
I think it is harder because two agencies are involved and things have got confused. Once you have only one agency and the care plan is laid out so the carers know what they are doing it will be much easier.
Thank you Canary. This is really what I feel but my moments of self doubt are many. I hope you are finding some peace, for you, in your own situation now too.
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
I never told my mum she was paying for carer's as I knew she would object and make it more likely she rejected them - given she didn't think she needed them. I suspect your brother would tell her she was paying anyway so probably not an option for you.

They were initially brought in for meds as my mum was clearly not taking tablets correctly.

I think trying to distance yourself and manage your mum's needs, not her wants make it easier.

My mum was clearly not capable of understanding what she could and couldn't do and so I had to take charge (I never wanted to be a carer and it took me a while to come to terms with this label)
Thanks for making me feel less alone. You sound as though you had a similar thing going on. And you are right too- It helps to be on here to manage my many times of self doubt - I have, firstly, my mother who can sometimes go on about how she doesn't need this care and they "don't do very much"( but that is very changeable) but then my brother, when he is here, potentially endorsing her opinions about her need for care.. It is strange because, now that he has taken off again, she is a little more accepting. She even got into a sort of little "discussion" with the Memory Clinic nurse on Monday about Nursing Homes. The Nurse said that before she worked in the community she had worked in nursing homes and she was giving her opinion on a good one. My Mum perked up with interest and asked her to write down the name in case she needed it....and wanted other recommendations. I was amazed. About 10 minutes later she was saying that "People don't get properly looked after in nursing homes" - and "Look at me, how that carer gave me too many tablets and I had to go to hospital". This was, of course, the home carer she was referring to.
 

thistlejak

Registered User
Jun 6, 2020
242
0
As you have already tried blister packs can you ask at the pharmacy if they use the electronic pill dispensers - I think the NHS one is call Pivotell. It gives out pill at set times and is locked so that your mum can't get the rest of the tablets.
We used one for FIL and he loved it , it wasn't quite as successful with MIL - she used to swear blind it had given her them twice.
You can only do your best - MIL didn't take medication correctly for about 6 years before she went into care.
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
As you have already tried blister packs can you ask at the pharmacy if they use the electronic pill dispensers - I think the NHS one is call Pivotell. It gives out pill at set times and is locked so that your mum can't get the rest of the tablets.
We used one for FIL and he loved it , it wasn't quite as successful with MIL - she used to swear blind it had given her them twice.
You can only do your best - MIL didn't take medication correctly for about 6 years before she went into care.
Thanks- I have thought of that one too - but I really don't think it would work. She can't sometimes work the remote or the phone or the lock in the door. Even if the tablets came out I'd have no guarantee she'd taken them.
 

DreamsAreReal

Registered User
Oct 17, 2015
358
0
Thank you @Muttimuggle 🥰

Mum’s overdosing and underdosing of meds was the original reason she had to have carers coming in. They were the only way it could be done. She couldn’t understand any new tech, or even old tech like her TV. An electronic pill box would have been ignored, binned or possibly not seen (what happens if pill box is downstairs and mum’s stayed upstairs? Or vice versa?).
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
Thank you @Muttimuggle 🥰

Mum’s overdosing and underdosing of meds was the original reason she had to have carers coming in. They were the only way it could be done. She couldn’t understand any new tech, or even old tech like her TV. An electronic pill box would have been ignored, binned or possibly not seen (what happens if pill box is downstairs and mum’s stayed upstairs? Or vice versa?).
I thought, for a moment, I was reading my own post there DreamsAreReal. Take care of yourself now in your grief. I am wishing you peace. I am about to print off from the link you sent now. xx
 

KatyKat

Registered User
May 8, 2022
111
0
I made the decision that my mother needed the intervention of a second care slot. I am not sure if my mother really wants this particularly as she has to pay for it...but I have agonised long and hard about this and she seems to be in some sort of agreement(for the moment) now. The reasons for my decision to instate a second 30 minute care slot into her day are 1) so that she can be able to be dosed 2 sets of medication which are best kept apart 2) because she seems more confused and forgetful of late 3) because I am again her sole family carer as my critical and invisible brother and his wife have taken off for another 3 month holiday on another continent, 4) because I sufferer of long term chronic pain and dysfunction which limits me.

My decision has been difficult, much like the first one felt when I instated the first single care slot , even though the memory clinic consultant urged me(and my mother) to go ahead and do what I thought necessary. My brother and his criticism and maybe denial of the situation and maybe also my mother's ability to practice hostess mode when she sees him have made things very difficult.

The problems, setting aside my difficult brother, which I have arisen in my mind about my plan have been, firstly, that I have to rely upon services who do not always get it right either. Over the past 6 weeks my mother has been receiving care from her normal agency at tea time and then also has had a "bedtime slot" provided free by the City Council which follows her hospital stay. This latter care only lasts 6 weeks and then finishes. One of the council care carers gave my mother the same 7 tablets which she had received at tea time from the agency carers instead of the 2 bedtime slot medications she was supposed to give! My mother takes some dangerous stuff including Edoxoban. At midnight the paramedics came out to her and she had to be admitted to hospital overnight because of the seriousness of the overdose!! Luckily she "got away with it" but the council care team did not seem to understand my concern and wanted to send the same carer back the next night!! (which I didn't allow). Less seriously within this same 6 weeks her agency, for whom she pays, once dosed the tea time and the bedtime slot tablets together and then another time failed to turn up until I alerted them about the mistake. What I am saying here is that I feel I must substitute my own efforts to deal with my mother alone for efforts to keep checks on the care agency. I know no-one is perfect and I am not asking ever for that. The error with the double dosing was the worst but it wasn't with the agency who will now be employed to do both of the care slots.

Then there is the problem about the cost incurred to my mother who doesn't want to pay(but can...for the moment) and the worry about the retribution which might come from my brother on his return. On Monday Mum's Memory Clinic Nurse came out to Mum's house to speak with both of us. She knew my situation and she managed to convince my mother that instating the extra care will be the best thing and made sure my mother knew that the downside is that she will have to pay for it. And 30 minutes is expensive as compared comparatively to an hour, because the travel of the carer is a large part of the expense. But I can't think of another way round it anyway.

So decision made. Plan ready for action but it still doesn't stop me awaking myself in the night with the words which arose somewhere from my subconscious - "I don't want to do any of this!". It also is all wrapped up in my chronic pain and my chronic pain is wrapped up in it. I am lucky to be on an NHS pain management course specifically concerned with Pain and Self Compassion. I am learning where my origins to pain and my connections to pain come from. I am grateful for this.

So I am wondering- Is each new care step as painfully difficult as this? Must I go through it all again with the next intervention? How do I get mentally stronger to deal with it? Thanks if you read this far. I am mentally processing(again) in writing it down.
I feel for you, as I am sole caregiver to an elderly Mum with dementia. Plus, I live with chronic pain and exhaustion. I seldom get a decent night's sleep and frequently wake up in terror.

I don't have an answer to this yet...and keep wondering how much longer until I end up in hospital from burnout or worse. I'm hoping to get help from a counsellor in a couple of weeks.
 

LouiseW

Registered User
Oct 18, 2021
33
0
Hi, much love to you. Everything is so much harder with pain. Once the benefits of your Pain Management course are felt things will get better.

It's a tough tough gig you have and I wish you all the best
 

Muttimuggle

Registered User
Dec 28, 2021
245
0
I feel for you, as I am sole caregiver to an elderly Mum with dementia. Plus, I live with chronic pain and exhaustion. I seldom get a decent night's sleep and frequently wake up in terror.

I don't have an answer to this yet...and keep wondering how much longer until I end up in hospital from burnout or worse. I'm hoping to get help from a counsellor in a couple of weeks.
Yes , KatyKat - I already have the counsellor. That is a necessity for me at the moment. My pain management course has also been validating and helpful - but finishes soon. All pain stems from the brain, you will know this - so the calmer and more at peace we can feel the better our management and even experience of pain will be. I feel for you too KatyKat. Are you in the UK?
 

KatyKat

Registered User
May 8, 2022
111
0
Yes , KatyKat - I already have the counsellor. That is a necessity for me at the moment. My pain management course has also been validating and helpful - but finishes soon. All pain stems from the brain, you will know this - so the calmer and more at peace we can feel the better our management and even experience of pain will be. I feel for you too KatyKat. Are you in the UK?
Oh yes, I agree about the mind/body connection. Lately, I've been experiencing severe muscle spasms all over due to stress -- they began a year ago when Dad fell ill and rapidly worsened when I became full time caregiver to Mum in Jan 2022

Sadly, I am sort of isolated in the US where, outside of the big metro areas, there is not much for support of any kind for caregivers.