I made a doctor's appointment for myself (and with a mention to Canary)

[Muttimuggle]

I haven't seen or consulted a doctor since before the pandemic. I have been so stressed by everything - my mother, my nasty brother, my own chronic pain and the dysfunction I have long felt in my foot and lower leg(many years) that my attention is now on my blood pressure. As I only have one kidney I have been warned by consultants that I must not allow it to become high because it will then cause my kidney function to be attacked and permanently lowered. Exercise will or would help but my pain has been so bad of late...and I am quite aware of the psychological connections of pain.Everything feels overwhelming at times. At other times I seem so efficient and capable with the many health professionals I speak to on behalf of my mother.

I posted before about my mother having 2 falls and my brother, who went out to the second one and his alarm and anger that "he should have to deal with" the fact that she had wet herself because she was on the floor and that he thought I "ought" to be there instead. And the actual wetting herself was the smallest of the problems and had only happened because in the time he took to get there she couldn't get up(because of her knees) and had no choice. She wasn't feeling very well though but it hadn't that day seemed to make any worsening change to her cognition.

Anyway she went to hospital. As I I expected all of the tests came back with "nothing remarkable" showing - the head scan and the gut scan(which she had been awaiting anyway). Mother has one complaint after another and I must sometimes decide to "watch and wait" as sometimes what she has got me worrying about and acting upon evaporates into thin air. Sometimes I may have to choose to act more quickly. The decision is hard.

I happened to meet my nasty brother who I haven't set eyes on for more than 2 years when I took my mother's Click and Collect shopping to her home whilst she was in hospital. He was also at her house. I decided to say very little because he winds me up so much that I might say something which also then makes me " guilty"....but I was and still am reeling from that encounter.

He accused me of being in "some sort of denial" about mother and being "very matter of fact about it all" and that if I hadn't phoned Mum about her shopping list she might have been "lying in her own urine all night"(This is true, yes, and confusing to reflect upon and mum clearly had the phone next to her and knows my number. She gave it out earlier to the paramedics when she first fell outside).My husband thinks he might have meant that I should have been staying put with her, maybe even overnight, but I have decided I will not do that. As for the denial, thinking about a psychological reason why he might have said that- as I am not in denial, but he seems to me to be in denial(with a 3 month absence in Florida over Christmas for example) it sounds like he is experiencing the shock that I have been living with about Mum for a first time maybe and that I, as Canary said in her poem, am operating in a sort of ice block, or like a robot, an efficient robot, or the manager of a client- or in other words a human who has found the only way to survive without being sucked in time and time again. I know Canary, your poem, along with the threads on the page you sent, is about a PWD who is your spouse and with whom you maybe live but I so much recognise my own similar need to provide emotional distance.

Actually, on her first evening back after hospital yesterday she once again told me she was having this funny intermittent one sided strange feeling in her head which puts her off balance. The hospital team came out yesterday to assess her in the home and will be putting in more grab rails. She also has accepted the hospital 6 week package for extra, nurse care (probably because it was free) and this will be a bed time call. So a tea time call from the agency and someone else at bed time. Despite that she feels a liability to me. A mixture between - "Look at me, how good I am and what I can do" and "I'm terrible, I feel bad".....and I suppose maybe with the Alzheimer's bit of her dementia the connection and the learning between the 2 gets somewhat forgotten?

And to add to my frustration! To make more efficient use of the way her many tablets were ingested they were split into 2 sections - tea-time to be dosed by the normal care agency, then bedtime by the nurse care team for the hospital. Of course I primed Mum about this many times and thought I could trust that it would all go ahead but when I phoned her this morning she said that someone came when she was in bed and tried to give her her tablets and so she told them that she had already had her tables at teatime. And they didn't give her them!!!!
They had been told where the carers box was with the blister packs in...and even if they had looked they would have seen the bed time slot remaining. Of course when I phoned to enquire the lead person was very defensive- asked has my mother been deemed lacking in capacity in the hospital or something like that. It seems that having the mixed dementia diagnosis was not enough and my mother can be very convincing. (My brother obviously has been "taken in" too!!)

I write because I need to offload and if anyone reads it is an extra bonus and thank you- I know I write a lot!!)

 

[GillP]

Unfortunately, as many on here have found, there are often family members who are not helpful. In such circumstances the care is usually picked up by one person whilst others are critical. Does your brother live nearby? He ought to be helping with your Mums care. It is a lot for one person.

Has she had a needs assessment and have you had a carers assessment?

You need to try to look after yourself, advice we all give but sometimes find it impossible. However, you have identified your health needs and it is good to note that you are going to see your GP.

I wish you better times. Keep posting and do take care.

 

[Lawson58]

Exercise can be daunting if you suffer a lot of pain and it is hard to get motivated.

I have started at a small gym at our medical clinic and which is run by an exercise physiogist. She has a range of resistance exercises that are easy to do inside your home but can actually work wonders in a fairly short space of time. None of them are exhausting to do and many can be done sitting down without a lot of specialist equipment.

The only thing I can suggest is that you step away from your mum’s care for a little while which I know you will be reluctant to do but it seems to me that you are suffering burnout, and that is horrible.

I think it could be good to bite the bullet with your brother, tell him that you are unwell and can’t care for your mum for a while. Then let him get on with it. I think you are going to have be a bit brutal about it but if something happens to you, he will have to do it anyway.

My personal experience is that with burnout, it is almost impossible to keep on pushing through and considering your own health conditions, it is essential that you don’t let your brother continue to bully you.

 

[Muttimuggle]

Unfortunately, as many on here have found, there are often family members who are not helpful. In such circumstances the care is usually picked up by one person whilst others are critical. Does your brother live nearby? He ought to be helping with your Mums care. It is a lot for one person.

Has she had a needs assessment and have you had a carers assessment?

You need to try to look after yourself, advice we all give but sometimes find it impossible. However, you have identified your health needs and it is good to note that you are going to see your GP.

I wish you better times. Keep posting and do take care.

Thank you. I didn't originally get the needs assessment because my brother was extremely angry with me and said that if I involved social services he would "block me". So when he left for Florida and the diagnosis was got I decided to instate care privately( for tablet taking as the main priority because she was getting this dangerously wrong). My mother was self funding so I thought it might not make any difference to the care she got. Now with this 6 week package she has come out of the hospital with, where her tablets are dispensed also at night time by community nurses, i understand, I think(?) that when the 6 weeks is over it will be, if necessary, continued by SS. I was also told I would get a social worker. I am hoping that she will then be entered into a system which will provide me with backup and will assess her needs independent of me- so may say she needs more or less care than she has been having...and she will remain self funding until she gets below the threshold? It is complicated for me to understand and I am not entirely sure about what will happen?

 

[Muttimuggle]

Exercise can be daunting if you suffer a lot of pain and it is hard to get motivated.

I have started at a small gym at our medical clinic and which is run by an exercise physiogist. She has a range of resistance exercises that are easy to do inside your home but can actually work wonders in a fairly short space of time. None of them are exhausting to do and many can be done sitting down without a lot of specialist equipment.

The only thing I can suggest is that you step away from your mum’s care for a little while which I know you will be reluctant to do but it seems to me that you are suffering burnout, and that is horrible.

I think it could be good to bite the bullet with your brother, tell him that you are unwell and can’t care for your mum for a while. Then let him get on with it. I think you are going to have be a bit brutal about it but if something happens to you, he will have to do it anyway.

My personal experience is that with burnout, it is almost impossible to keep on pushing through and considering your own health conditions, it is essential that you don’t let your brother continue to bully you.

Thank you Lawson58 Yes, sadly I also do the exercise that the pain management clinic set me every day almost without fail. I also try to do other stuff whilst suffering pain and dysfunction like a little walking, cycling or running. I do these things because I have a fear of getting high BP. still suffer and find it hard to work out why my foot and leg are not working properly - I have been fully assessed but no-one found anything apart from advanced arthritis in my midfoot - I do think I may ask the doctor if he/she could review this though. My joints often feel stuck together and exercise does not seem to unstick them. The medical gym sounds interesting though and I am assuming it is part of your GP practice?

You are right about the stepping away. The blister packs have been changing so much as well as now, the 2 separate agencies dosing them . When that settles I am hoping that I can do as you say -bite the bullet with the brother. His reaction to my chronic pain if I mention it is usually- "It is too bad about your pain" He is simply a horrible person. When he feels he can't cope he just stays away - either that or he has no conscience.
I have my doctor's appointment next week. I hope it helps.

 

[Violet Jane]

I support an elderly friend. After she was discharged from hospital after an episode of Delirium and a fall a care package was put in place by the NHS/SS for a number of weeks. It was called something like Rapid Response or Reablement and was free of charge. I say ‘care package’ but I recollect that health professionals (eg nurses, OTs and physiotherapists) were involved as well. I think that the idea was to bring my friend back to the level she was at before her hospital admission (in the past she would probably have gone to a convalescent home for few weeks)

A social worker from the Local Authority came to interview my friend after a couple of weeks with a view to agreeing a care plan going forward. From that point on this would be regarded as social care and payable by my friend who is a self-funder. Fortunately, my friend agreed and the plan was set up. It was commissioned by the LA who then invoiced my friend. My friend could have organised a care package directly with the agency that the LA was using or with any agency she chose as she was a self-funder.

My husband is my friend’s financial attorney but neither he nor anyone else has a PoA for health and welfare. Thus far, my friend has always been found to have capacity in relation to her living arrangements, care etc but my husband and I have been closely involved in these types of decision. Both health and social care personnel have always been very keen to speak to us (always with my friend’s permission) because it’s clear that she does get confused and doesn’t always accurately report the facts. Although my friend has no close family at all there is extended family who take an interest and it has been very useful to have the backing / input of SS at each stage so that my husband can’t be accused of going beyond his remit as a financial attorney.

So, what I’m saying - in a rather long winded way - is that even though you can go ahead and arrange things without the involvement of SS if the PWD is a self-funder if there’s a difficult family member objecting to care being put in place / money being spent it’s useful to have the endorsement of SS for what you’re doing.

 

[Muttimuggle]

I support an elderly friend. After she was discharged from hospital after an episode of Delirium and a fall a care package was put in place by the NHS/SS for a number of weeks. It was called something like Rapid Response or Reablement and was free of charge. I say ‘care package’ but I recollect that health professionals (eg nurses, OTs and physiotherapists) were involved as well. I think that the idea was to bring my friend back to the level she was at before her hospital admission (in the past she would probably have gone to a convalescent home for few weeks)

A social worker from the Local Authority came to interview my friend after a couple of weeks with a view to agreeing a care plan going forward. From that point on this would be regarded as social care and payable by my friend who is a self-finder. Fortunately, my friend agreed and the plan was set up. It was commissioned by the LA who then invoice my friend. My friend could have organised a care plan directly with the agency that the LA was using or with any agency she chose as she was a self-funder.

My husband is my friend’s financial attorney but neither he nor anyone else has a PoA for health and welfare. Thus far, my friend has always been found to have capacity in relation to her living arrangements, care etc but my husband and I have been closely involved in these types of decision. Both health and social care personnel have always been very keen to speak to us (always with my friend’s permission) because it’s clear that she does get confused and doesn’t always accurately report the facts. Although my friend has no close family at all there is extended family who take an interest and it has been very useful to have the backing / input of SS at each stage so that my husband can’t be accused of going beyond his remit as a financial attorney.

So, what I’m saying - in a rather long winded way - is that even though you can go ahead and arrange things without the involvement of SS if the PWD is a self-funder if there’s a difficult family member objecting to care being put in place / money being spent it’s useful to have the endorsement of SS for what you’re doing.

That's useful Violet Jane. Thanks. So it looks like all of those things you mentioned have been happening. She was sent home with a team and I met her in her home. Further things are coming- grab rails and other things. Today, after the failure to dose the meds by the team they sent at bedtime(community nurses) because my mother already told them she had taken her meds, and after the phone call I made to enquire about the error, a lead person who was very defensive said that she was going out to do an assessment of her and it was best if I turned up. I didn't because I needed to go and collect another new blister pack from the hospital but more truthfully I was feeling so distraught this morning(and I did end up "blubbing" a bit on the phone) so she said she would arrange to go on her own to Mum's. I am not sure how good a plan(or lack of plan on my behalf) that was. I hope that they can trust what I am telling them and that my mother didn't go into hostess, showing off mode...having said that she is currently still in her bed clothes. She was extremely confused this morning but when I took the blister pack around lunch time she seemed quite relaxed. Who knows?- I wonder if that was "the" assessment Violet Jane? I thought it was somehow connected to the community nurse team. Does the SS assessment follow the 6 week package? It would make more sense as patients are likely to improve after hospital, in time. Or maybe there will be a second assessment. Of course I couldn't get through on the phone to ask.

 

[Violet Jane]

The NHS is keen to stop the care package that they put in place and pay for as soon as they can. It won’t necessarily last 6 weeks if the ‘goals’ have been reached earlier than that. The first time my friend had the Reablement / Rapid Response care package I felt that so many visits were overwhelming and were de-skilling her (she had not been diagnosed at that stage) and so I suggested that the care package be reduced. The second time the care package only lasted about two weeks and the care package arranged by SS started a couple of days later. There really isn’t much of an element of convalescence.

I believe that it is a LA social worker who carries out the assessment and draws up the care package which will start once the NHS Reablement / Rapid Response type care package ends as it will be the LA which pays for the care package if the person is not self-funding.

 

[Lawson58]

Thank you Lawson58 Yes, sadly I also do the exercise that the pain management clinic set me every day almost without fail. I also try to do other stuff whilst suffering pain and dysfunction like a little walking, cycling or running. I do these things because I have a fear of getting high BP. still suffer and find it hard to work out why my foot and leg are not working properly - I have been fully assessed but no-one found anything apart from advanced arthritis in my midfoot - I do think I may ask the doctor if he/she could review this though. My joints often feel stuck together and exercise does not seem to unstick them. The medical gym sounds interesting though and I am assuming it is part of your GP practice?

You are right about the stepping away. The blister packs have been changing so much as well as now, the 2 separate agencies dosing them . When that settles I am hoping that I can do as you say -bite the bullet with the brother. His reaction to my chronic pain if I mention it is usually- "It is too bad about your pain" He is simply a horrible person. When he feels he can't cope he just stays away - either that or he has no conscience.
I have my doctor's appointment next week. I hope it helps.

I hope that you take the opportunity to explain to your doctor how you are feeling emotionally and I hope that you get some answers about your leg and foot. Keep in touch and let us know how you get on.