Our magic bitter sweet moments 🥰🥰🥰

[Neveradullday!]

You would have lost it today @Eddcorner!

The deputy manager who clearly has not understood mum’s condition tells me to back off from the steroid issue and that I am overthinking 😡😡

Alright, Ms @sdmhred
Av bin avin a Burmese wiv a couple of ar crew. For a decent portion o jockey's n Lillian they are willin ter kipper up ter Surrey an sort this geezer/geezeress art. 😉
Whevver that's leavin 'messages' on is/er motor or their bonce! An they are ready as they av just loaded up on Rubys. ☺️

Sammy

 

[sdmhred]

🤣🤣🤣 thank you Sammy!

 

[sdmhred]

I’ve calmed down a bit…but not standing down from my annoyance …just not going to let it drag me down too much!

so I will do a positive post 😀😀 work has been a good distraction for me. Mum was up and back engaging in care home life. She was knackered yesterday as had been in the dining room for a meal, to the art group and then on to the church service. Today in bed to recover.

Tonight we’ve tracked her travels into Kashmir and had a lovely chat with some of the carers about their travels 🥰🥰

Our lovely Northumbrian lady whilst being pushed past…asked if she ‘could pop into our house for a wee 🥰🥰’….and we have a newcomer who expressed her feelings by pretending to be dead on the floor in the corridoor bless her…..she only ‘came to’ when being hoisted up……the carers were very compassionate with her and I was impressed with them!

 

[sdmhred]

Gosh it’s been quite a week - I feel as if I’ve been whacked from every side!

Care home stresses
CHC
Mum‘s body not coping with steroid drop
GP stresses
POA - various folk hassling me for money - I was a bit naughty to one and said i needed to run it past OPG to get them off my back 🙈🙈 estate agents of mums old rental wanting money even tho they have returned the deposit already 🤷‍♀️🤷‍♀️
And then yesterday senior manager wanting to meet to discuss my ‘wellbeing’…..I’ve not been going into the office enough so will need to correct that one …

So today I have looked after my wellbeing by taking it very slow this am, walked this afternoon and painted for a bit this evening. I’m quite pleased that despite all the above I am relatively in one piece.

i think I’ve found pleasure this week in one of the ladies on a different floor to mum. I go there to use the coffee machine and I always ask this lady if I can use her ‘cafe’. She always greets me with a huge smile and a hug yesterday 🥰🥰 I think it’s just her kindness without any strings admist her difficulties which has touched me. She has really ‘blessed me’ . I read a post about pearls of joy this week - she has been mine!

 

[Knitandpurl]

That is beautiful. You are so right about the ‘pearls if joy’ and like pearls found in the most unlikely of places. Sending you hugs.

 

[sdmhred]

Thank you @Knitandpurl
I need the hugs this week 🤗🤗 and have been sustained by my pearls!
Today I planned for a long walk and then meal with mum and sister this afternoon. All started well - I even began to think if there is anyway I can ‘boundary’ these stresses - especially as none of them are directly mine if that makes sense…

20mins into my walk my phone just dies 😢😢 i have a spare one waiting …but it took 3 HOURS to set up - I thought it should be a matter of changing sim but not these days 😢😢 lunch off 😥😥

oh well …I’m taking a mark that I didn’t shout or scream or snap at anyone because I felt like it 🙈🙈🤣🤣

I now have a working phone (minus some crucial apps 🙈🙈) but have at least had a relaxing eve sitting watching TV with mum…

 

[Knitandpurl]

Life was so much simpler before all this ‘tech’ that’s supposed to make all our lives easier. Am afraid it’s one of the things that winds me up quickest, I feel so stupid when I can’t do it.

 

[sdmhred]

I am sooo being battered at the moment. Woke up feeling ok, did some cleaning - and then bam! The nursing home now want a meeting 😭😭 I’m told it will be ok and to go through the care plan, but also about my anxiety regarding mum’s tablets 😬😬 of course I am anxious she has a rare disease and we yet to have a proficient protocol in place for managing it. I was assured it would be sorted and still hasn’t. Not the homes fault - down to GP. So much for me trying to ‘boundary‘ some of these stresses!

Im trying to be positive and think it may be productive but my mind usually tells me meetings are difficult …..I also wear my heart on my sleeve and will cry easily which I know doesn’t help. I’ve always been like that and can’t do much about it. It’s problemmatic as I think it clouds some of the rationale behind what I say 😬😬

The home is good. The nurses and carers are excellent. I don’t want her to be evicted, but I am beginning to think they’re not keen on me just ‘hanging out’ with mum. I love to do that and want to make the most of things.

No-one teaches you how to navigate all this stuff!

 

[Eddcorner]

I am sooo being battered at the moment. Woke up feeling ok, did some cleaning - and then bam! The nursing home now want a meeting 😭😭 I’m told it will be ok and to go through the care plan, but also about my anxiety regarding mum’s tablets 😬😬 of course I am anxious she has a rare disease and we yet to have a proficient protocol in place for managing it. I was assured it would be sorted and still hasn’t. Not the homes fault - down to GP. So much for me trying to ‘boundary‘ some of these stresses!

Im trying to be positive and think it may be productive but my mind usually tells me meetings are difficult …..I also wear my heart on my sleeve and will cry easily which I know doesn’t help. I’ve always been like that and can’t do much about it. It’s problemmatic as I think it clouds some of the rationale behind what I say 😬😬

The home is good. The nurses and carers are excellent. I don’t want her to be evicted, but I am beginning to think they’re not keen on me just ‘hanging out’ with mum. I love to do that and want to make the most of things.

No-one teaches you how to navigate all this stuff!

From a professional point of view like myself I'm sure you would easily hold your own with these 'individuals' but in a personal capacity..? Having been subjected to a surprise meeting many years ago with someone close to me - I remember specifically a social worker telling me about my 'emotional state', normally I'd wipe the floor with such but felt the old adrenaline kick in and was totally disarmed. It did not go well!!

You know your mum better than anyone in my book, however going on what you have shared they clearly believe in their rigid model of care and the role you must now play. I utilise services in partnership with an excellent community team as and when needed... there's transparency on both sides and it works well that way but you have to deal with a different set of challenges...

It sounds almost territorial in this CH which is upsetting but not surprising, I wish I could offer up a solution @sdmhred. Never forget that you're doing your best to represent mum's interests, let that be your armour; it is not a crime to love someone and I hold you in the highest regards in pursuing the best possible care for her ❤

 

[jennifer1967]

I am sooo being battered at the moment. Woke up feeling ok, did some cleaning - and then bam! The nursing home now want a meeting 😭😭 I’m told it will be ok and to go through the care plan, but also about my anxiety regarding mum’s tablets 😬😬 of course I am anxious she has a rare disease and we yet to have a proficient protocol in place for managing it. I was assured it would be sorted and still hasn’t. Not the homes fault - down to GP. So much for me trying to ‘boundary‘ some of these stresses!

Im trying to be positive and think it may be productive but my mind usually tells me meetings are difficult …..I also wear my heart on my sleeve and will cry easily which I know doesn’t help. I’ve always been like that and can’t do much about it. It’s problemmatic as I think it clouds some of the rationale behind what I say 😬😬

The home is good. The nurses and carers are excellent. I don’t want her to be evicted, but I am beginning to think they’re not keen on me just ‘hanging out’ with mum. I love to do that and want to make the most of things.

No-one teaches you how to navigate all this stuff!

they should be pleased that you feel comfortable enough to want to hang out. its your mum after all and you want to make sure she is well cared for. i cry very easily as well especially under pressure. its like a release. good luck and tell them how it is

 

[sdmhred]

It’s awful. Mum has tonight had v loose bowel - most likely due to rapid drop of steroid. Carers shocked. I asked politely what latest plan was from GP for such situation- no response.
This is a good care home, but not coping with her rare diagnosis and me being knowledgeable but also emotional.

 

[Louise7]

Hello @sdmhred sorry that you're having a stressful time at the moment. I wonder if it might be helpful to arrange a meeting with both the doctor and a nurse from the care home to discuss your mum's health care and tablets, and try to have someone with you too for support (even if they are on the end of a phone rather than there in person)? My mum is in a nursing home and I know from experience that the care staff (who are not medically trained) are unlikely to know medical related information such as GP plans, which can get frustrating when you ask a question and don't get a response, so speaking directly to the GP and nurse is likely to be more productive. That said, I'm not sure why the staff would be shocked by very loose bowels as this isn't an uncommon occurence in a nursing home. It's understandable that you are getting stressed by things, I would be too, but hopefully things will seem a bit better in the morning, and I hope that the planned meeting to discuss your mum's care plan goes well.

 

[Frozen1234]

It’s awful. Mum has tonight had v loose bowel - most likely due to rapid drop of steroid. Carers shocked. I asked politely what latest plan was from GP for such situation- no response.
This is a good care home, but not coping with her rare diagnosis and me being knowledgeable but also emotional

I read your thread but never comment! Just wanted to say that you are amazing to your mum and only want the best for her so please don't worry about tomorrow. Hopefully it will be productive and I am sure they don't mind you spending time with your mum. FWIW, in your situation, I hope I would be doing what you are in terms of monitoring her illness.....and they need to sort out the medication so you are not worried. Hang in there...

 

[sdmhred]

Thanks both. I appreciate the support.
sadly it was the nurse I asked regarding the plan 😢 I have seen the GP with the nurses on many occasions. We have all been asking him for a prescribing protocol so everyone knows what will happen in certain eventualities. I am not sure why he isn’t doing it.
Loose bowels are both a cause and symptom of adrenal struggle. If she isn’t given any extra steroid she will deteriorate and possibly have an adrenal crisis which is life threatening And completely avoidable. I don’t think the GP has grasped this even tho I have sent him clinical letters etc. i think I am now seen as emotional so my information is disregarded.
i feel stuck with no energy for fight left.

 

[SeaSwallow]

I am so sorry to read what both you and your mum are going through. It must be so hard for you and I can appreciate why you feel so tired of the fight. Is there any way that the consultants who prescribed the meds can talk sense into the GP.

 

[sdmhred]

After ensuring mum was ok. Still loose but no worse I have given myself a day off the stresses and strains. I sat and just enjoyed being with her rather than engage with the stress. I asked nothing about her meds and equally was given nothing either. I needed that for today. Usually in this circumstance I ask for a few days prophylactic abx for uti but I couldn’t face it. I do somehow need to work out how to put some boundaries on all these stresses - thank goodness all that has come in my inbox for mum has been 2 small invoices to pay - you never actually get a day day off!!!

 

[Knitandpurl]

After ensuring mum was ok. Still loose but no worse I have given myself a day off the stresses and strains. I sat and just enjoyed being with her rather than engage with the stress. I asked nothing about her meds and equally was given nothing either. I needed that for today. Usually in this circumstance I ask for a few days prophylactic abx for uti but I couldn’t face it. I do somehow need to work out how to put some boundaries on all these stresses - thank goodness all that has come in my inbox for mum has been 2 small invoices to pay - you never actually get a day day off!!!

Hope you slept well and feeling a bit less stressed this morning. Any chance of you taking a few days holiday, a weekend break or something? You really sound like you need it.

 

[sdmhred]

Thanks @Knitandpurl …I have been contemplating a night or two away….I would feel better if I knew the medication issue is resolved …..we meet the nursing home team on Monday so let’s hope it’s productive.

i do generally feel though now I need to try and boundary myself from some of the stresses. Not quite sure how I do that tho - I may try joining the rest of the world and ignoring emails 🙈🙈

Work has been a good distraction these past few days …I’m glad I put senior manager off until next week - am making sure I do everything by the book 🙈🙈 it was good yesterday mum was able to be up and joining in when I was busy ….and then when I arrived today she was having a lovely time with one of the male carers helping her with her meal ….’a pleasant chap’ she told me 🥰🥰🥰 I have to say all the floor carers are really good and have such a good way wiht the residents.

oh but what made me 😡😡 yesterday was a chap from either NHS or SS doing a capacity assessment on one of the chaps IN THE LOUNGE 😱😱😱 He said in a very patronising tone ’ do you know where you are?’ And then pointing at the carer ‘who is this lady?’. The poor resident doesn’t speak, but had to be humiliated like that in front of everyone. I had to apologise to the resident as someone working in the mental health field. Appalling! I wish they didn’t have a confidential visitors book as I would have complained if I knew who he was…The carers were also cross as they had offered to take the resident to his room.

 

[Jools1402]

Is the bearded dragon yours sdmhred? I have one myself. Mum's home also regularly has "the animal man" visit with a beardie, snake and various small animals.

 

[sdmhred]

Ah no @Jools1402 not mine sadly. This is Fatty 🙈 who belongs to one Of the staff. They have animals visit really regularly - she has Had a baby goat, tortoise, corn snake and gerbil in her bed in the last month. She really enjoys it!