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Discussion in 'I care for a person with dementia' started by Sam Luvit, Oct 26, 2016.
Sam, just stopping in to check on you and your mum. And to throw some (((hugs))) your way.
Sam, I am hoping that your day has been calmer and that you have been able to get some zzzzzs (((hugs)))
Despite telling the care company I really can’t have a call before 09.00, they refused to change & the Carer was early too. Oh yay. Great start. I’d had 2 sips of coffee. Thankfully she’s a dote & insisted I sit & drink & she wouId hold off signing in. I’m thankful for such kindness. The carers are being so kind to me, it’s like they are caring for me too
Mum was asleep, didn’t want to get up. Didn’t want anything. “I’m not having a bath” pouty face. I said she was having a shower & that was the end of discussion. The Carer said she couldn’t make her, but wouId try. Mum had a shower & a hair wash, so she must have changed her mind
I made breakfast & then gave it to Pooch as she didn’t eat anything. I’m not pushing. She takes her meds though, so that’s good. I took her into the lounge as it’s warmer. She then fell asleep
I figured I’d do a bullet point list for the GP, as he’d not met Mum. Don’t know why I bothered, he glanced at it, put it at the bottom of his paperwork & left it behind when he left
GP was young, so not going to have much experience, but I hoped he had some empathy. Huh. I guess him asking me “do you think your Mum is dying?” Should have given me a clue.
No examination. He kept his distance, leaning over her, so not exactly reassuring. Anyway, he then starts talking about how mum is old. There isn’t much they can do to reverse the things that are wrong with her. (She’s looking unsettled)
Then he says .. “you know what palliative care is as you were a nurse”.
Mum snapped back “oh course I know what that is, I may be old but I’m not stupid”
He then tells her, he’s going to contact the palliative care unit & they will come in & make her comfortable. Wow. I just couldn’t believe my ears. He’s just told her she’s old & it’s all over. Some empathy. I wanted to pick him up & throw him out the house.
He then says he needs to talk to me & I will be back with her shortly.
This was his “explanation” of prognosis... can someone explain it in English coz I’m stumped
When we see deterioration on a daily basis, we are looking at days
When we see deterioration on a weekly basis, we are looking at weeks
You are seeing changes every day
We are not looking at days, we are looking at long weeks or short months.
He then left, saying he would arrange the just in case box (no explanation of what that was, so I’m glad you guys had told me). He will arrange the medication sheet which tells me what & when. He will do a referral to the palliative care team & they should be in touch in a few days
I found my voice at last & told him, with all due respect (in other words absolutely none at all), I’d waited a week, despite both myself & ASC chasing, for a GP to talk to me following P the Paramedics visit. So, exactly when wouId he do the referral & exactly how long is a few days. Referral today. Contact 2 or 3 days.
He couldn’t get out the house fast enough. He shot off. (I’m pretty disgusted)
S the neighbour (not the religious one) arrived as the Dic left. She’d agreed to sit with Mum while I went to counselling as brother couldn’t get here early enough today. I was on auto pilot & just handed Mum over & drove off. I don’t think counselling was the thing to do, but I went anyway. I left early too.
As I had time, I picked up brother & told him the news. He took it well, but he was ranting about the Dic telling Mum. We agreed it was cruel to spell it out to her. I understand the need for accountability & wanting to be transparent, but this is about a scared old lady, not blowing a budget. Surely this just isn’t right. Telling my mum she’s finished isn’t nice. It’s not transparent it’s just horrid. This is not an appropriate time to stick to “the patient has a right to know”
Mum had been very cross about “that doctor” saying she was old & ....” but kept forgetting what she was saying, according to S. I took Pooch round the block while brother sat with Mum, he said she kept starting a conversation about “that eejit of a doctor’ & was really cross & upset by it all
I feel just awful for doing this. I had to, so she can have whatever help & drugs needed to help her, but it’s really upset her. It’s just wrong. What pencil pushing politician came up with this?
Eventually she just fell asleep sitting at the kitchen table.
I decided I’ve had enough. I’ve tried talking to the care coordinator, but gotten nowhere. Lots of “I understand” & not much action. So, I phoned her boss. I said I don’t like going over someone, but I don’t have the energy & I don’t have the time. Please. Sort it out. I need regular carers. I need the same times. I cannot have 08.30 calls. I’m too tired. There is a likelihood they will be involved in extra care for end if life. I think she got the message. I blooming hope so.
Didn’t we just have to have a brand new, never been here before Carer tonight. I spent 10 minutes telling her about Mum, showing her where everything is & helping get Mum upstairs. Carer had ordered a taxi home (I didn’t know) & the taxi driver was in a right mood, just what I needed. The Carer tried, but it wasn’t a great visit. I lay the blame with the office. Hopefully things will improve.
Mum decided she was eating tonight. A whole piece of toast. She then wanted hot chocolate. Lots of prompting to swallow, lots of guiding the cup to her mouth rather than her nose, but she drank it, eyes closed, very little interaction
I suggested she go to bed rather than fall asleep & then have to wake to to go to bed. That’s when the fun really started. She was very unsteady getting up, then wobbling on standing. We managed the short walk to the stairs, but she was then leaning heavily to her right. I had to support her & suggested maybe sitting, but she said she was ok & started up the stairs. Three steps up she couldn’t get her right leg to move, couldn’t weight bear & I'm in no mans land.
I ducked my head under her left arm & took her weight, hanging into the railing, while arm round her waist. I’m thinking she has a fractured pelvis, how much am I hurting her? Tried getting back down the three steps but she couldn’t follow instructions. A few minutes, I’m sweating, I’m scared of hurting her. What do I do? Then she tried again & we slowly made our way up. It was like her right side just didn’t work. Maybe a TIA?
We made the bathroom & into bed, but it was hard work. She kept saying “my leg won’t work”. I had to shout at her to make her stop reaching out at times. It was the only thing I couid do to make her stop. Once in bed I’ve apologised but I feel awful for shouting. She said it’s ok. She didn’t hear me shout at her
Pooch is snuggled up with her. He’s not come down like he normally does. He knows. Bless him. He’s growled at me all day if he can’t get to her as I’ve pulled a door closed to prevent a draft. He’s just wanted to be with her.
My jaw hurts from gritting my teeth all day. My head hurts from holding back the tears. I’m so tired, but I can’t sleep. I know Mum will get up soon & the first alarm will shrill through the house. I know I’ll have 3 or 4 more blaring alarms go off before my gentle “blues” alarm wakes me for another day in paradise
What a day
I caught them I needed them too
Lol cue hysterical laughter ... @Slugsta this has not been a good day I’ve gotten through by knowing I’m not alone.
Please see above / below
Doctors without empathy ......
Hoping you managed to sleep and sending more hugs.
What an absolute #!'@!!* of a GP (please insert your own suitable word cos I will get kicked off the forum if I say what I am thinking) Yes, where possible, patients need to know that the end is approaching in case there are things they need to do/say - but there are ways of doing this that don't frighten a confused old lady (or confuse a frightened young carer!). Dog knows what he was talking about with his days/weeks/months spiel
I'm glad that some of the carers are good with your mum and are trying to look after you too. It should all be part of the job. As it is, a 'service' that is supposed to make your life easier is just adding to the stress
Last night's 'episode' sounds both physically and emotionally exhausting (((hugs))). It does sound as if it could have been a TIA but I guess it could also be down to exhaustion on your mum's part too.
Oh Sam what a day...I well remember that desperation when you're stuck on stairs with your Mum, terrified that if you make one wrong move - or she does - that you'll both land in an injured heap at the bottom. How would you get to the phone you forgot to put in your pocket? How long would you both be lying there before someone found you...all flashing through your mind in a split second.
I hope, that despite that Drs inexperience (from the sound of it), and insensitivity, your experience of the palliative care team will be as good as ours was.
I will try to include the link to the team in our area in a mo.
I knew we were very close to the end with Mum when our young (but very kind) GP came out and I had already asked for palliative care at home to be arranged, although I thought at that time that perhaps we had a few months to go.
I'm hoping they will give you the support you so desperately need, they arranged Marie Curie-trained carers for us who are a whole different kettle of fish to the carers who carry out the usual day-to-day social care, you feel very much looked after and they will come when you want them to, double-handed and include you every step of the way if you want to be.
The District Nurses should visit you every day and should be on call to visit throughout the night if you need them.
They can give your Mum any medication she needs to reduce agitation, pain etc.
The DNs should contact you first and ask about a profiling bed, airflow mattress etc, and carry out a home visit to establish what you both need from them.
Sam, this doesn't mean that your Mum is definitely end of life, things may be like this for quite a while, take what they offer now and should your Mum stabilise or even improve, then they will discharge from palliative care until you feel you need it again.
I realise things may be different in your area, but if it's anything like ours, I felt as if Mum and I had finally been wrapped up in a warm duvet of care - daft I know, but true. The days of struggling on our own had ended and we felt very safe.
I wish this for you with all my heart and hope you will feel more supported once everything is in place.
So sorry for the interminable post, I just hope it helps?!
Have a read through the link if you have time, I'm so hoping that your area has the same type of service, you need the help and you need many (((hugs))) so I'm sending them also.
Any queries, ask away xxxxx
I guess I slept some, although Mum was up at 3, 5, 7, she’s out for the count now. My head is throbbing & my eyes are raw, yet I’ve not shed a tear. Her right leg weakness was gone at 3 in the morning, it was “working fine” thankfully.
Hugs gratefully accepted. I could do with a pummelling deep tissue massage too if anyone has one of them floating about
Im glad to hear that your mums leg is working again now. It did sound like a TIA to me - thats how OH started when he had his stroke.
Im so sorry you are so tired. Take any chance of a snooze today.
@Prudence9 - that sounds like good advice. Sam, when you are feeling more "with it" have a good read of it.
I’m glad I’m not alone in thinking the GP was a bleeeeep. I just sat there thinking he can’t be saying this, I couldn’t figure what to say or do to stop him without maybe making it worse. The poor woman is exhausted, she doesn’t need to be cross too. I won’t have him in the house again under any circumstances, so that’s 2 of the practice who are banned now
Brother thought maybe the days/weeks/months was a way of saying something while saying nothing. Brother was furious, I was just shut down emotionally. Funny, coz he says I’m too emotional usually, while I say he’s too buttoned up. We sure swopped places yesterday
The lovely French Carer is coming this morning, she’s told me she will even come in on her days off to give Mum continuity, now I have to tell her we are officially at the next step, it could get emotional.
Whatever the episode was, there didn’t appear to be any lasting effects, Mum walked to the bathroom in the middle of the night & seemed very ‘with it”. I’ll have to see what happens in half an hour when it’s time to get up.
It’s cloudy & dull, matches my mood. I need sunshine & heat. At least the weekend looks promising.
I'm speechless, I know it's a rarity
The whole thread I've just read.
Compassion ???? Doc needs to get a little training on that
Will speak soon x
Thank you @Prudence9
I will read the link information later, when Mum is sleeping & I get more than a 5 minute cup of coffee. I suspect it will need a bit if concentration on my part
My phone is generally in my pocket, although I’ve left it on the table a few times. I had it last night, but getting to it meant letting go of Mum, so not really an option & I couldn’t think of who to call. So I braced as best I could & waited. It is seconds of blind panic, followed by calm waiting to see what’s next
I’ve just had a call from the community nurse team, they are coming to visit tomorrow to assess, offers of a profile bed & other equipment were made. She had been told nothing about Mum. Absolutely nothing Didn’t know it was Alzheimers, stroke, multiple fractures, nothing at all I filled her in briefly & told her about the GP& that I won’t have him in the house again.
I told her about last nights episode, that I suspect a TIA, but Mum seems recovered from that. She said once they’ve been, I can call them at 03.00 & they will come out. That’s a relief. That made me cry
I’ll take any & all help offered. I will need to know costs, as I will need to start selling shares soon. Basic care costs of £500pcm sure rip the bank balance down in a hurry. I’m guessing one night a week wouId easily double that. I so don’t need trying to find a broker & however long the sale takes. Nothing is easy with this
Just getting some answers wouId be good. Just having a number to call half way up the stairs wouId be good. Sleep wouId be fantastic, but I’m not asking for that just yet ... I’ll keep that request for later , like when I really need it
Thank you again for sharing the information, hopefully Mum will get the help we need
Sam, I am glad that mum's leg is working properly today! Here's hoping there are no more such incidents halfway up (or down) the stairs.
I'm glad the DN has been in touch and sounds helpful and hope the palliative Care team come through for you.
When Mum was at end of life, we eventually discovered that the Palliative Care team had been disbanded and the duties taken over by the DNs. Few of them had proper training in Palliative Care and they certainly didn't have room in their schedule to take the time needed It made a difficult time harder (you might remember my fight for a syringe driver, and a sensible dose of morphine!) I really hope this is not repeated throughout the country.
Sam palliative care should be at no cost to you and your Mum, it's an NHS service.
Very often an overnight Carer can be provided so that you can sleep.
(So understand crying when you were told they would come out in the early hours, I did too, we are so overwrought and exhausted, worried and stressed).
Ours was overseen by the GP (although we didn't ever need to call them out again), and the DNs, thankfully well trained in palliative care.
I'm so sorry Slugsta that your experience was not so good, I think it very much depends on the area you're in, we were very lucky and had only one bad experience with a very odd DN who came out on Mum's last evening with us and was reluctant to provide morphine even though it was obvious Mum was very uncomfortable, why I don't know, we all knew at that point she only had hours to go.
Thankfully the Carers arrived, calmed me down (I wasn't letting her out of the house until she did something to ease Mum's pain) and talked the DN round somehow and Mum died two hours later very peacefully.
Sam, I am appalled at the attitude of that GP.
'First do no harm'. Huh! I really don't see much evidence of that when telling somebody (whom they know has dementia) that they are old and dying. How did he honestly think that would help your poor Mum? I do hope her memory has erased that information and she can just concentrate on her dislike of him.
I am so sad for you Sam, that when you are at the end of your rope with no reserves, you are still having to fight, fight, fight. I really hope that the DN team come good, make Mum calm and comfy, and give you a chance to recharge a bit. Then, all being well, you can get yourself in a better place to support Mum and have a bit of unstressed time together - safe in the knowledge that there's a safety net ready and you are not bearing that huge weight of responsibility all on your own.
Love and hugs to you both .... and Pooch!
Unfortunately it seems that drs empathy or ability to communicate well and compassionately at any time especially end of life is very hit and miss. Dad at end of life had good care in hospital ...although I did stay in with him to make sure it happened...and on his return to NH but a locum dr called by the nurses late into the night in his NH was rude and abrasive...dad was unconscious by this point so was not upsetting for him but certainly was was me and senior nurse but both of us stuck resolutely to getting what dad needed and wouldn't let him leave until that happened.
End of life time wise is very difficult in some patients to judge it seems. An OH of a resident at dad's NH was told end of life was a couple of weeks away...fast tracked CHC..18 months on and she is stable. Dad I thought would be walking the NH corridors forever and even in hospital when it was clear he was in a serious condition I thought would get over that blip..deteriorated and died a week later.
I suppose sadly just as with lack of dementia understanding some GPs are also better at end of life communication than others.
I hope the support you need is not long coming.
At least Mum is walking again, if it was a TIA, no lasting weakness, although her speach is more slurred, but then it’s been getting a bit worse each day
The priest has been, Mum was so pleased to see him, just lovely kind man with a wonderful Glaway accent. They prayed in Gaelic apparently. I stepped outside & gave them some privacy. He’s said he will come again any time I want. That’s a comfort
A speechless @Margi29 just wow I was too, just couldn’t get my brain to form the wires to shut his mouth.
Heaven help them if they send out one of their dumb questionnaires, I doubt I couid remain polite
Good, thats one less thing to worry about. He sounds lovely.