Fluctuating Capacity

[DesperateofDevon]

Oh Mums a classic one, can’t move about but manages to get out in the garage to access the freezer for cake supplies!!
Amazing will power when she wants her sugar rush!!
But can’t open the cupboard & sort out food as she gets dizzy! But not dizzy when troughing mini magnums from the freezer inside!!!
Saints above! don’t apply logic to this
It’s like having a geriatric toddler with a bank account!!!

 

[DesperateofDevon]

Aged mother rang this morning & yet again I struggle to get her to understand even the simplest of sentences. Patiently repeating them, key words, it’s heartbreaking that this only line of communication is becoming problematic.
Yesterday she just talked about wanting to die & how she wanted my Dad to die first.
Today after the first sentence, How are you - it was all downhill. The community matron saw Mum yesterday & she was on good form so I’m told. Mums hosting seems to take so much energy out of her, it takes longer to recover it seems. I wouldn’t know if anyone had been if they didn’t tell me. Mum has little recollection of yesterday. I am pleased to say that the night time visit is reinstated, but Mum doesn’t know why as she can do everything herself. Including the hoovering so she tells me! She uses a Eubanks!!!
It pushes dust from one place to another!
Just sorting out a new cleaner for Mum & can see that after her demanding a new one we are back to I can do it at the moment! Hateful disease, flip flopping away in her head!
I hope I’m wrong but I don’t think it will be long before Mum can’t be looked after at home. The warning signs are there already, back to denial & doing things her way again. Really hope I’m wrong but speech patterns historically indicate that troubles on the horizon.

 

[DesperateofDevon]

So I’ve not heard from Mum, phone not being answered ... but I know she’s ok because the carers are going in 4 times a day now. The community nurse emails me to say she’s seen her. How sad is it that I know something’s brewing as Mums not ringing me daily/ constantly; I know she’s either frustrated at her situation & blaming me for it, another UTI in the offing, more progressive symptoms of her dementia it’s one of those I know as there is nothing else left now. I’m dreading Wednesdays appointment with the clinical mental health team as I know she is, fluctuating capacity is cruel at times!

But it must be done, I wish my husband could be with me - he can’t due to work commitments. So my daughter is driving me down & going with me. Not a great day mother daughter day out! Maybe a nice girlie meal on the way back! Especially since I have to stop & walk every hour with The dvt!!

I’m trying to be positive but i know what is coming... My poor aged mother will be dreading this & she will do anything to avoid facing her reality.
It’s a cruel disease... I really beg god that I never have this!

 

[canary]

(((((((((((((((((((((((hugs))))))))))))))))))))) @DesperateofDevon
I hope Wednesday goes better than you fear. At least there will be others around who will be able to see that you cannot help and it is not your fault, even if your mum doesnt recognise this.

 

[Grannie G]

It`s the worst time @DesperateofDevon

You know what`s coming and hate the thought of it. I remember taking my mother to a neurologist. My husband was well then and able to support me.

The neurologist said he wanted to examine my mother and there and then , in the waiting room, she began to undress. I felt such sadness for her.

I can only send sympathy and understanding and hope you have the strength of mind to see it through.

 

[TNJJ]

So I’ve not heard from Mum, phone not being answered ... but I know she’s ok because the carers are going in 4 times a day now. The community nurse emails me to say she’s seen her. How sad is it that I know something’s brewing as Mums not ringing me daily/ constantly; I know she’s either frustrated at her situation & blaming me for it, another UTI in the offing, more progressive symptoms of her dementia it’s one of those I know as there is nothing else left now. I’m dreading Wednesdays appointment with the clinical mental health team as I know she is, fluctuating capacity is cruel at times!

But it must be done, I wish my husband could be with me - he can’t due to work commitments. So my daughter is driving me down & going with me. Not a great day mother daughter day out! Maybe a nice girlie meal on the way back! Especially since I have to stop & walk every hour with The dvt!!

I’m trying to be positive but i know what is coming... My poor aged mother will be dreading this & she will do anything to avoid facing her reality.
It’s a cruel disease... I really beg god that I never have this!

 

[TNJJ]

So sorry to hear this.I hope it goes better than you think.
This fluctuating capacity is a nightmare!
I’m waiting for dad to get worse,as it will be hopefully easier.
Not a nice thing really.
Sending ((hugs)).

 

[DesperateofDevon]

So a meeting on Thursday evening with the lovely community matron at Mums home. ( it was a hectic day with a lot of travelling involved!!!)

Mums care is being handed over to the CMHT & a meeting next week is required. Thank goodness other half has a company car as we are clocking up over 1200 miles a month plus just going to & fro of Mums once a week!!!! Lord knows what’s going to happen when we need to do it more!!!!

at least my daughter is around to help - but I feel so guilty that her young life is on hold helping me out - husband works away part of the week so need someone else to help me - what with the distance between parents care etc!

mum can’t write anymore,only a couple of weeks ago it was legible- not now.
very quickly things going down hill for both of them.
xx

 

[canary]

You cant be in 2 places at once DoD. I remember a similar occasion when mum was put on End of Life just at the same time that OH was admitted to a London hospital for tests/treatment.
You simply cant keep going backwards and forwards to your mum. Is she still having 4 carers a day or has she cancelled them?

 

[Dimpsy]

I'm full of admiration for you @DesperateofDevon; following your posts, you have been at the forefront of your parents care, finding your way through, and at times tackling head on, our incomprehensible and mysterious care system, always striving to find the very best care for your mum and dad for each stage of dementia they have reached.
You say that things are bleak for both of them now and yet you're still fighting their corner; sending best wishes from me for an agreeable outcome to your meeting next week.
And don't feel guilty about asking your daughter for help, don't you realise that you are shaping the adult she will become?
Belonging to a caring family includes the sharing as well and you are a brilliant role model. Your daughter is involved because she loves her grandparents and, in turn, sees the emotions you go through and naturally wants to protect and help you, what a lovely family you have.
X

 

[DesperateofDevon]

@Dimpsy & @canary
Thank you both. yes Mums still having four carers in a day but next week on Thursday or Friday is the CMHT taking lead - handover from the wonderful community matron who got us over that awful hiccup!
Don’t really know what else to call it that won’t cause the lovely moderators palpitations! & me a gentle reminder of appropriate language......

Mums care plan needs have changed so the meeting is required & Mum needs the support & reassurance of us. Aged mothers comprehension & recall is fading as is her mobility & speech.

Dads medical assessment on Tuesday locally - so baby steps.

There is a light at the end of the tunnel now but I’m praying it’s not a train coming towards me & actually daylight.
the cost of having resolution is bereavement- a sad situation that is inevitable with this disease.

So I’m numb but kinda functioning!

thanks peeps for the support. I’ve been feeling isolated & vulnerable so really appreciate your replies as you wade through life’s little adventures yourselves
Xx

 

[Bunpoots]

I think you’re amazing @DesperateofDevon, coping with all you do. I‘ve cared for 3 close relatives with dementia but only one at a time! I don’t know how you do it.

I’m glad that you daughter is willing to support you. My girls helped me out when I needed it - I too felt guilty but it made all the difference just having someone else there.

 

[DesperateofDevon]

I think you’re amazing @DesperateofDevon, coping with all you do. I‘ve cared for 3 close relatives with dementia but only one at a time! I don’t know how you do it.

I’m glad that you daughter is willing to support you. My girls helped me out when I needed it - I too felt guilty but it made all the difference just having someone else there.

I am doing it all badly at times! I can sound ranty my husband tells me!
But ranty or not I have to try & get stuff in place.
I don’t feel amazing - worn out & I can’t imagine how others care for their loved ones 24/7???

I am just bumbling along & trying to do my best - meanwhile causing chaos wherever I go!!!! clumsy care ..... with good intentions!!!

 

[Little Circles]

I can totally relate to fluctuating capacity. My Mum has mixed dementia and her capacity is up and down like a rollercoaster
A lady from the NHS came at 2.30 pm to assess Mum today and I personally don’t know how Mum did it but she pulled off that she was fine and had no issues. She even convinced me at times during the meeting that she was fine. I can’t understand how the human brain with Dementia works, when in the morning she was too ill to go Daycare and then couldn’t remember who I was but she was fine in the afternoon. The lady told that she would not be recommending any additional funding and that a local placement would suit my Mum and not one for challenging behaviour as had previously been suggested.
When my brother visits she again ‘holds it together! He lives 150 miles away so doesn’t visit much and he questions my father’s and mine observations and questions if she has dementia even those she has been diagnosed

I did indicate to the NHS lady that she had not seen the ‘real’ Mum. I don’t know how my Mum did it but she pulled off an act worthy of an Oscar, she convinced her that there wasn’t much the matter with her and was lucid and was told the two police incidents last week were perhaps one offs?? She called the police on my father and went missing and had police patrols looking for her for 3 hours!! She has been told by one care home where she went for respite whilst my father had an operation they won’t have her back as she was verbally aggressive to staff, wandering in residents rooms taking their possessions and went to hit a staff member.

It seems I take 3 steps forward and 2 steps back

so frustrating!!!

 

[TNJJ]

Sometimes I feel like I’m in Never Never Land.People see the PWD in host mode like your mum and tend to believe them.My dad is very good at hosting when friends and professionals visit.
I often wonder how they get their jobs as they never see beyond the “hosting “.One SW who came to access dad asked if he could use a knife and fork.”Yes” said dad.I had to point out that he has left sided weakness after a stroke so the answer was “no”.You think that that would give a clue wouldn’t you?But no..Hopeless!

 

[DesperateofDevon]

I can totally relate to fluctuating capacity. My Mum has mixed dementia and her capacity is up and down like a rollercoaster
A lady from the NHS came at 2.30 pm to assess Mum today and I personally don’t know how Mum did it but she pulled off that she was fine and had no issues. She even convinced me at times during the meeting that she was fine. I can’t understand how the human brain with Dementia works, when in the morning she was too ill to go Daycare and then couldn’t remember who I was but she was fine in the afternoon. The lady told that she would not be recommending any additional funding and that a local placement would suit my Mum and not one for challenging behaviour as had previously been suggested.
When my brother visits she again ‘holds it together! He lives 150 miles away so doesn’t visit much and he questions my father’s and mine observations and questions if she has dementia even those she has been diagnosed

I did indicate to the NHS lady that she had not seen the ‘real’ Mum. I don’t know how my Mum did it but she pulled off an act worthy of an Oscar, she convinced her that there wasn’t much the matter with her and was lucid and was told the two police incidents last week were perhaps one offs?? She called the police on my father and went missing and had police patrols looking for her for 3 hours!! She has been told by one care home where she went for respite whilst my father had an operation they won’t have her back as she was verbally aggressive to staff, wandering in residents rooms taking their possessions and went to hit a staff member.

It seems I take 3 steps forward and 2 steps back

so frustrating!!!

Ask the police to support you & provide incident report numbers, also ask the care home for the notes on your Mum &their comments.
It’s horrible having to prove what you are saying is true, trust me I know
Keep going my lovely, I’m battling to & if enough of us keep at it something somewhere will have to change. After all we cannot all be wrong! This isn’t about people & care anymore this is about finances!

It’s wrong ! Very wrong

 

[DesperateofDevon]

Despite aged mothers protestations of not liking Christmas & it jollity - we are having Mum to stay!
Oh my days ! oH & daughter have offered to do the brunt of the work!!


Santa bring me me sparkle & joie du vie please by the bucket - or dumpertruck!

 

[canary]

oH & daughter have offered to do the brunt of the work!!

Lets hope they keep to their word. Lay down the ground rules now - and stick to them
xx

 

[TNJJ]

Had enough.Dad coming home after respite as he won’t stay.”Capacity “ again.
That’s ok. So let the wagons roll!
Tomorrow I’m requesting that the care group do dads shopping and take him out the same time.
They can also keep an eye on dads medication as well.
Him being in the home for 3 weeks has given me a break and peace of mind.But no more..
They can have the responsibility.I don’t want it

 

[DesperateofDevon]

Had enough.Dad coming home after respite as he won’t stay.”Capacity “ again.
That’s ok. So let the wagons roll!
Tomorrow I’m requesting that the care group do dads shopping and take him out the same time.
They can also keep an eye on dads medication as well.
Him being in the home for 3 weeks has given me a break and peace of mind.But no more..
They can have the responsibility.I don’t want it

I can understand that. I rang the care agency & asked if they could sort out Mums shopping, I also emailed the district nurse after a disastrous attempt to arrange a home audiologist as asked for by District nurse etc. Let’s just say that the advert doesn’t tell you that the mobile audiologist only works one day a month!! Guess what ... there is a waiting list...... no shock there then. Oh & mum is meant to send in her broken hearing aid ... how ? No post office in village bus ride away & she’s house bound! Care package is still in place but funds now reaching the point that financial assessment is required!
Let the fun begin!