diary of a frustrated coventrian!

[try again]

Ok she's not diagnosed yet but by heavens one of us needs to be. After this afternoon I really hope it's me.
Took my mother to her eye hospital appointment, got there a little late. Obviously the mantra "no more talking let's get walking" didn't quite work. Waited 30mins then went to chase up nurse. Got out then chemist and tescos.
Doctor told her off for not continuing eye drops, she said she didn't think she needed to (a huge argument between us a few months ago seeing me with a couple of bottles that night).
Shopping was so slow, she's not very mobile and pushes her little shopping trolley around, almost immobile at some points.
I tell her next time we won't do hospital and shopping on the next day. She thinks she is fine and it is me who can't cope (she's right today).

Where's that rooftop we can go on?
Her next visits are doctor for poa and dentist for teeth on Wednesday. She has to mention eye drops, I want to see if she has been referred to the memory clinic but I am not allowed in while they discuss the poa.

I know I have the patience of an angry wasp but my head is being done in already and this is before the possible dementia journey.

I have been trying to get an asessment for over a year for her now. She has been showing increased memory problems for three years and already has mobility and mild incontinence problems. I guess at 86 she's entitled to some defects.

Anyway thanks for listening, I feel better for the rant.

 

[try again]

Oh well! My thread was supposed to say coventrian!

 

[Izzy]

Oh well! My thread was supposed to say coventrian!

I take it that's someone from Coventry? Would you like me to edit the title of the thread?

 

[try again]

I take it that's someone from Coventry? Would you like me to edit the title of the thread?

Please !

 

[nellbelles]

Don’t you just love autocorrect!

Pity we cannot Edit real life as easy as we do with the written word.
I don’t blame you for the rant,obviously no one is listening to your input.
Will her GP listen to your concerns or have you to wait for POA?

 

[Izzy]

Please !

It's done - I hope I got it right!

 

[try again]

It's done - I hope I got it right!

Yay! I'm back in Coventry! Thanks.

 

[Grannie G]

Pity we cannot Edit real life as easy as we do with the written word.

Now that would be clever nellbelles.

 

[Jale]

I feel for you - is the visit to the dr's to discuss setting up a poa? Are you shown on your mum's records as being her carer? I think that when we started gp visits with mum I was put onto mum's records as her carer and a contact - mum was unable to use the telephone. We then got mum;s permission for health matters to be discussed with me.

When I first thought mum had the start of dementia I wrote a letter to her gp expressing my concerns and handed it in at the doctors a couple of days before the appointment.

As far as the mild incontinence problems then whilst at the doctors ask for a referral to the incontinence clinic, also ask if you can be referred to The Admiral Nurses

 

[try again]

Hi now home waiting for the wine to chill!
Poa meeting with doctor is for finance only. She doesn't want me to have the health one (thinks I'd put her in a home...now there's a thought!) And tbh, it's not something I want to have anyway. I have been doing the paperwork for her for about three years so it's about time we made it official. The last time we phoned her bank to set up a £5 direct debit she had to go through security but couldn't answer how old she was or what other bills were paid straight from the bank. The lady said that she didn't want to hear me prompting in the background so I was trying to write the answers down. Sadly mum couldn't read and kept saying "what does that one say" - in the end I think they got even more frustrated than me so let the direct debit go ahead. After that I told her we needed the poa in place, I have been trying to get her to agree to it for some time dreading what the future may bring.
Other highlight so far have been Feb 17 when she fractured her shoulder, she could never remember any of the exercises she had to do, even when the physio had just showed her and asked her to repeat. Used to spend hours at home showing her what to do.
She also had a cataract done Dec 17, another argument with eye drops. I lived with her for two weeks after to ensure the drops were done. Left alone she would show me how well she did them, usually going to the wrong eye and on two or three occasions shoving the bottle up her nose. I'd wait, she'd say like this? I'd wait a bit longer hoping she would realise then say "no not up your nose" she would say it's not up my nose, I'd say look. She would say "oh damn", remove bottle from nostril then repeat.
I emailed her doctor last week just before an appointment with my concerns. She was seen by a locum who went through the standard question. She couldn't give dob, age , count backwards from 20, didn't know date or month or year. And asked to recite months backwards said September. They said they would refer her. She was given folic acid after blood tests so I am hoping the referral still went ahead.

I have said most of this before on other threads but like a few on here think I will start my own story here.

At this stage her numerical skills are pretty useless, she forgets words a lot so can sometimes be difficult to follow. She does forget conversations so usually after doctor appointments there are rows about what she should or should not do or what she wasn't told. She loses things around the house, has trouble with phones and remotes. She also has a slight shaking in her hands, today I noticed it seems to be in both a little.

Well that's this thread started!

 

[try again]

Oh she has been with the incontinence nurse for a couple of years now so has pads though she doesn't use them at night but has a commode next to her bed that she uses several times a night.
Currently she lives on her own, 4 miles from me and up to now I go twice a week to do shopping and whatever else needs sorting and of course extra days for appointments as she can't get out on her own.

 

[Primrose19]

Oh yes, the memories of telephone banking and being told not to prompt! After mum’s debit card had gone missing yet again and trying to cancel it. That and bring at the bank and promoting her with her PIN!

 

[jknight]

Hi now home waiting for the wine to chill!
Poa meeting with doctor is for finance only. She doesn't want me to have the health one (thinks I'd put her in a home...now there's a thought!) And tbh, it's not something I want to have anyway. I have been doing the paperwork for her for about three years so it's about time we made it official. The last time we phoned her bank to set up a £5 direct debit she had to go through security but couldn't answer how old she was or what other bills were paid straight from the bank. The lady said that she didn't want to hear me prompting in the background so I was trying to write the answers down. Sadly mum couldn't read and kept saying "what does that one say" - in the end I think they got even more frustrated than me so let the direct debit go ahead. After that I told her we needed the poa in place, I have been trying to get her to agree to it for some time dreading what the future may bring.
Other highlight so far have been Feb 17 when she fractured her shoulder, she could never remember any of the exercises she had to do, even when the physio had just showed her and asked her to repeat. Used to spend hours at home showing her what to do.
She also had a cataract done Dec 17, another argument with eye drops. I lived with her for two weeks after to ensure the drops were done. Left alone she would show me how well she did them, usually going to the wrong eye and on two or three occasions shoving the bottle up her nose. I'd wait, she'd say like this? I'd wait a bit longer hoping she would realise then say "no not up your nose" she would say it's not up my nose, I'd say look. She would say "oh damn", remove bottle from nostril then repeat.
I emailed her doctor last week just before an appointment with my concerns. She was seen by a locum who went through the standard question. She couldn't give dob, age , count backwards from 20, didn't know date or month or year. And asked to recite months backwards said September. They said they would refer her. She was given folic acid after blood tests so I am hoping the referral still went ahead.

I have said most of this before on other threads but like a few on here think I will start my own story here.

At this stage her numerical skills are pretty useless, she forgets words a lot so can sometimes be difficult to follow. She does forget conversations so usually after doctor appointments there are rows about what she should or should not do or what she wasn't told. She loses things around the house, has trouble with phones and remotes. She also has a slight shaking in her hands, today I noticed it seems to be in both a little.

Well that's this thread started!

Oh, Try Again. You really need the health POA. If mum is hospitalised, you won't have any say in her treatment and the doctors won't talk to you about treatment or care. If she needs to move to a home, it will be the social workers deciding her needs to and choosing a placement. You will have no input.

 

[jknight]

Oh she has been with the incontinence nurse for a couple of years now so has pads though she doesn't use them at night but has a commode next to her bed that she uses several times a night.
Currently she lives on her own, 4 miles from me and up to now I go twice a week to do shopping and whatever else needs sorting and of course extra days for appointments as she can't get out on her own.

So who sees her on the five other days? Is she safe to cook? (can she cook?)
Does she take her medication without prompting? My mum isn't incontinent but she needs support seven days a week. Meals on wheels. Sandwiches for tea. Company. I see her every day and have employed a care service to visit 4 days a week (while I work) to ensure she takes her medication and give her companionship

 

[try again]

She's managing on her own the rest of the time though her cooking is limited now to egg and bacon sandwiches or a mixture of boiled potatoes, veg and bacon stewed together in one pan.
She does get confused about medication but seems to have a system. She struggles a bit with new things. The antibiotics she had last week were 4 times a day and I went every day / other day. Some days she had 3 some 5.
I'm trying to persuade her to pay for a chiropodist as her toe nails are like talons and she can't manage. I can't do them , I can just about touch my own feet. I paid for the last one as a birthday treat for her .
I would love her to have a visit one day a week as I think we both realise there is no fun left in my visits. (not that there ever was a lot of fun in our relationship). She would have to pay which she won't. If we can get a diagnosis and an attendance allowance at some point, I will insist that goes on such like!
I don't really want the role of carer but wish to remain a daughter. I think quite often they are mutually exclusive.
I am trying to convince her we should go to her church over 50's tea every fortnight, they start up again in September so maybe I will have convinced her by then.

 

[jknight]

She's managing on her own the rest of the time though her cooking is limited now to egg and bacon sandwiches or a mixture of boiled potatoes, veg and bacon stewed together in one pan.
She does get confused about medication but seems to have a system. She struggles a bit with new things. The antibiotics she had last week were 4 times a day and I went every day / other day. Some days she had 3 some 5.
I'm trying to persuade her to pay for a chiropodist as her toe nails are like talons and she can't manage. I can't do them , I can just about touch my own feet. I paid for the last one as a birthday treat for her .
I would love her to have a visit one day a week as I think we both realise there is no fun left in my visits. (not that there ever was a lot of fun in our relationship). She would have to pay which she won't. If we can get a diagnosis and an attendance allowance at some point, I will insist that goes on such like!
I don't really want the role of carer but wish to remain a daughter. I think quite often they are mutually exclusive.
I am trying to convince her we should go to her church over 50's tea every fortnight, they start up again in September so maybe I will have convinced her by then.

Sounds like meals on wheels are a necessity for good nutrition.
You have POA for finance so you could arrange carers and pay, from mum's account.
Confusion over medication means someone needs to oversee it every day. The mis taking of antibiotics should ring alarm bells.
I have to say your mum needs daily visits. My Mum has carers 4 days a week. We visit everyday day. Twice a day on the days the carers don't visit. It's nothing compared with having your PWD living with you.

 

[try again]

With poa you are oblidged not to do anything against their wishes while they have capacity.
It is all a big worry, but I do think she is coping at the moment.
She handed in a load of medication to the doctors a few months ago, and while it sent me into a panic the doctor said some of the meds were many years old. So it's something I am keeping a loose eye on.
OH and I are thinking of moving down to Cornwall and I said that mum would have to come with us as I would hate her to stay here on her own - though the idea of living with her leaves me in a cold sweat. (i guess she could move somewhere close).
Perhaps I just have a lot of "manning up" to do.

 

[KathrynAnne]

With poa you are oblidged not to do anything against their wishes while they have capacity.
It is all a big worry, but I do think she is coping at the moment.
She handed in a load of medication to the doctors a few months ago, and while it sent me into a panic the doctor said some of the meds were many years old. So it's something I am keeping a loose eye on.
OH and I are thinking of moving down to Cornwall and I said that mum would have to come with us as I would hate her to stay here on her own - though the idea of living with her leaves me in a cold sweat. (i guess she could move somewhere close).
Perhaps I just have a lot of "manning up" to do.

It is a massive commitment to live with someone with dementia. My Mum has lived with me and my husband for over 2 years now. At first it was quite easy as we were able to go out and leave my Mum for a few hours whilst we went out and had a meal and a few drinks. It then got to the stage where we couldn’t leave Mum but could all go out together in the early evening. Now we are virtually stuck at home all the time as we can’t leave Mum on her own and there is no enjoyment taking her out as she has little appetite and is confused and agitated in unfamiliar surroundings. I would probably still go down the same route again if I had my time over but I don’t think I realised how very difficult, frustrating and demoralising it would actually be. At each stage it seems difficult and then things get worse! Think very carefully xxx

 

[Sarasa]

@try again - hope you get POA sorted. I'd try to go for both if you can. Can you say to mum the the health one is just about making sure that her wishes are abided by, rather than forcing her to do something she doesn't want?
My husband and I are also thinking of moving, as we don't think we can afford to live in London when he retires. If we do mum will have to move nearer either us or my brother, but no way would I have her live with us.

 

[Fullticket]

Really think hard about having your mum move in with you. I did that six or so years ago rather than travel across London pretty much every night (Southgate to Sidcup - those of you who know London, the Blackwall Tunnel, the A12 and A20 will know the problems!). For the first few months it was OK but as the dementia progressed I became a prisoner in my own home. Yes, she went to day clubs and day care but I also had to be around to pick her up and then could not leave her for the rest of the day. Once or twice we went out and when we came back the likelihood was she had fallen off her chair, or left the electric kettle on the Aga, spilled tea or emptied a bottle of wine (down her neck!).
I am sad she has now passed away but so grateful to have my life back.