what do I do all day.....

Toddleo

Registered User
Oct 7, 2015
411
0
Here's an odd question. I am trying to put together a list of all the things that I now do for mum due to her advanced dementia. It sounds easy, but I wanted your suggestions to cover the things that I might forget. I want to have this exhaustive list in my mind as defence against "the invisibles" when required.

Things like housework (though obviously I need to be specific: ironing/cooking/cleaning etc)
Organising all medical appointments
Getting mum to said appointments
dealing with "officialdom" (again, I need to be specific here: DWP/Blue badge/AA) etc

Can you help me put things together? obviously you don't know exactly what I do, but I am betting that most of you do the same....

Many thanks....:D
 

Sue J

Registered User
Dec 9, 2009
8,032
0
Here's an odd question. I am trying to put together a list of all the things that I now do for mum due to her advanced dementia. It sounds easy, but I wanted your suggestions to cover the things that I might forget. I want to have this exhaustive list in my mind as defence against "the invisibles" when required.

Things like housework (though obviously I need to be specific: ironing/cooking/cleaning etc)
Organising all medical appointments
Getting mum to said appointments
dealing with "officialdom" (again, I need to be specific here: DWP/Blue badge/AA) etc

Can you help me put things together? obviously you don't know exactly what I do, but I am betting that most of you do the same....

Many thanks....:D


Hi Toddleo

You haven't included in your list all the administrative things e.g. bill paying etc, maybe this is because your Mum lives with you and you have these things to do anyway for yourself but you presumably do hers as well?

Who deals with her personal care? Carers or yourself? If carers you have to liase with them.

Do you provide her meals? Who makes sure she eats?

Am sure there are lots of other things that need to be added to the list and maybe others will help too.

Best wishes
Sue:)
 

canary

Registered User
Feb 25, 2014
25,081
0
South coast
What about buying clothes? Do you take her with you when you do?
Buying toiletries and extras - and you have to check up on these things too so that you know when she needs more.
Reassuring her and answering her repetitive questions.

Personally I think that the invisibles have got a cheek making you justify how you spend your time. Why dont you get the invisibles to look after her for a week - then they would know what you do
 

Risa

Registered User
Apr 13, 2015
479
0
Essex
Do you take your Mum to any the following:

hairdresser
optician
dentist
chiropodist
doctor
clothes/shoes/food shopping

For officialdom you may have done the following:
Getting a POA and advising relevant parties (banks/doctors)
Making and attending Memory Clinic appointments
Getting an assessment for Mum and one for yourself as carer from SS
Completing AA form and Carers form
Taking responsibility for managing your Mum's finances which may involve meeting with relevant banks/building societies

If you look after your Mum's personal care you could list:
washing and dressing her everyday
cleaning her teeth
washing her hair
taking her to the toilet/providing products if she is incontinent/cleaning her after any accidents
assisting her with make-up/jewellery (my Mum loves her jewellery so Dad has become an expert on putting in earrings!)
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Absolutely I would be as specific as possible. As I've whinged and moaned about here oh so many times before, the paperwork/legal/admin stuff drives me up a tree. Here are some of the things I do for my mother, who is in a care home:


I communicate with care home staff via phone, email, and in person meetings (both official and unofficial), regarding my mother's care. Every 3 months, the care plan is reviewed and signed. I can request a care conference at any time (need to do so again) and that's more paperwork. I am in regular contact (usually via email) with the nursing supervisor about my mother's condition. Stay appraised of care plan changes, medication changes, doctor's visits and document all those in my files at home.

I also receive information about outings from the care home and which ones my mother has attended and if there are any issues from this.

My husband and/or I visit my mother in the care home regularly. In addition to spending time with her and taking her on outings (out to eat, for a drive, shopping), we also monitor her room and personal belongings. We check to see if anything needs repairs (care home maintenance staff or my husband). We check her bed to see if the sheets are changed, to see if she has clean towels and clothing. As her underwear (pants) seem to disappear, I keep an eye on those and replace as needed. We also make sure she has an adequate supply of toilet rolls, Kleenex, personal care products. We also keep her well stocked with snacks, and go shopping for toiletries and snacks for her on a regular basis. Ditto reading material (I try to switch out her books on a regular basis). Often there is a dementia-related "problem" we need to solve (the duvet is too heavy or the towels aren't right or they have "lost" her clothes). I keep an eye on her wardrobe, other than her pants, and replace tops and trousers and shoes and so forth as needed. I also often have to find her nightdresses and try to get those laundered, as she can't remember to put them in the laundry. Seasonally, I will get her winter coat mended and cleaned. We also check that her TV and remote and lamps are working and replace batteries and bulbs and get new remote controls/get the cable company to fix her account as needed. Also, we see that nothing important (glasses, dentures) has gotten lost, and check on her general hygiene, skin condition, nails, et cetera, to see if there are any issues. During visits I also often interact with the staff as much as possible.

After my mother had her crisis and went into the hospital, I engaged a solicitor to complete the American version of durable Power of Attorney. That document subsequently gets filed or sent to creditors, banks, the care home, the hospital, everyone you can think of. Periodically I still have to deal with those issues.

I have also retained an elder law attorney for my mother and am working with him on other legal issues, which is ongoing and again takes my time and attention for in person meetings, phone calls, emails, and paperwork.

I gather information and organise it to file my mother's federal and state income taxes. I keep track of medical expenses throughout the year and collate everything to take to the accountant each spring, and follow up to make sure everything was filed properly and any money owed or refunded is paid or received as appropriate.

My mother has investments and I have regular and frequent phone calls and emails with the financial advisor and his staff. I also have an in-person meeting at least once a year (it would be more frequent but he is not in the town where I live). Again, more time, energy, and paperwork. I work closely with the investment advisor (and the solicitor) to make sure there will be sufficient money for my mother's care, and to pay the monthly bills. Some transactions require more labor than others and I am currently in the middle of one of these!

I manage my mother's finances. I have the occasional phone call or meeting with the bank manager, more so at the beginning when I was setting things up, but still on a maintenance and as-needed basis. I set up online banking for her accounts to make it easier for me to pay the bills. I pay all of her bills online every month, make sure they are accurate, are paid on time and in full, manage any disputes or problems with the various companies and banks, and keep appropriate records. I also keep records for any purchases made on her behalf.

I manage my mother's medical care. Although the care home is visited by her GP and the neurologist, I stay informed (or try to!) about all her various appointments and any issues. I also arrange for any needed dental or eye care, new dentures and glasses, and any other specialists that might be needed. (Taking her for new eyeglasses last year was like planning a military campaign.) When the inevitable health crisis or hospitalization occurs, I will have to oversee that as well.

With the help of my husband, I cleared, cleaned, and sold my mother's property in another city. I found and retained an estate agent and handled all the paperwork for the transaction.

When my mother dies, I am the Executrix for her will and estate and will have to discharge all those duties. More paperwork.

I imagine other carers do all this and more. My list above leaves out meal planning, shopping, cooking, cleaning up from cooking and meals, and overseeing nutrition and hydration. It leaves out personal care (bathing, dressing, undressing, toileting, et cetera). It leaves out the laundry (clothing, bedding, washing, ironing, mending). It leaves out the housekeeping. It leaves out getting and administering medications, driving to doctor's appointments, scheduling and rescheduling appointments, and so on. It leaves out a whole lot of things that the care home and at home carers do. I bet we could write one heck of a job description!

So don't sell yourself short!
 

Beate

Registered User
May 21, 2014
12,179
0
London
I took this from my carers self-assessment:

Personal care like showering, bathing, shaving, cleaning teeth, dressing, toileting, incontinence care, skin care, medication, collecting prescriptions, providing and helping with food and drink, laundry, cleaning, household chores and repairs, shopping (food, clothes, incontinence products), finances, filling in forms, making and taking to medical and other appointments, dealing with authorities like social services and the day centre, taking out to cinema, restaurants and on holiday, constant supervision.

I could have also said attending focus groups, forums, workshops, coffee clubs and TP to gain more knowledge about dementia and services on offer!
 

Boronia

Registered User
Apr 25, 2016
15
0
what do I do all day

This touches a raw nerve with me too. Currently I get 2 hours respite a week. I have approached the relevant people, and this is about to increase. However a couple of months ago, I asked a sibling to sit with our mother for an hour because I was so desperately tired. Didn't get the help because the person was too busy. They had a job and family to look after. I haven't asked again because they haven't been to see Mum since.

I must say upfront, I "stole" the bones of this list from somewhere on the net because I was too tired to come up with my own ideas. However, it has morphed into something resembling my own perspective.

I am probably doubling up on some of the good advice already offered, but here goes:
provide personal care and support
encourage Mum’s independence
ensure I have input into Mum’s care and support by service providers eg home care (prone to having everything come at once instead of being spaced over the week)
assist Mum to get up in the morning and go to bed at night
sit with Mum when she is too scared to sleep
lay out clothes; remove unclean clothes
assist Mum to wash, bath and shower
assist Mum to dress and undress
assist Mum to look after her skin, teeth, hair and nails
assist Mum with toileting, management of continence and personal hygiene
assist Mum with medication
prepare food and drink for Mum, being aware of rapid changes in likes and dislikes or lack of interest in food or fluid
provide general household domestic duties including: including housework and laundry. This also includes soaking heavily soiled items and deep cleaning house as required
maintain all equipment required by Mum – wheelchair, walker, walking stick etc
maintain her personal effects. This also includes going through her clothes, shoes and underwear to ensure all in good order or when she has hidden or disposed of clothes. Purchase new items as required. (Sometimes we go to the shops for clothes, and other times she and I shop over the internet)
maintain home in reasonable order – organise tradepeople - recent leaky pipe etc as well as mending; purchasing new items eg hand towels; flowers etc
provide companionship to Mum - talking and listening to her. In my situation, she has lost cognition and some words so I have interpret a lot of what she says in order to maintain a conversation and not to let her feel as if she is stupid (her words). Not getting impatient with her when I need to do some work and she wants me to sit with her.
seek out opportunities to maintain interests – may include purchases eg cds of music or excursions
help Mum to maintain contact with rest of family and friends; includes purchasing birthday cards and or gifts and posting them on her behalf
arrange and accompany Mum on visits to the few relatives who have not run away. (sadly all her friends have now passed away).
accompany Mum on trips to shops etc
arrange and accompany Mum to medical appointments: doctor, dietitian; physio; podiatrist etc
arrange and accompany Mum to other appointments such as hairdresser (only way I can get her hair washed)
act as her advocate where appropriate
manage Mum’s personal affairs: financial matters; insurance; legal matters etc
ensure Mum’s safety while not disregarding her wishes – as appropriate. One example is that when she is fed up with me, she stalks off at a snail's pace. I let her go. We have a reasonably large garden and she often (in daylight) goes downstairs by herself and gets away from that dreadful person (me) - but I make certain I am close at hand. The gates are locked and she can't get out onto the busy road. But there are also nice things as well. She has been quite disinterested in the world around her lately. Recently, she saw some children walking to school and went down to watch them go by. She spent a lot of time telling me about them, and about her own children going off to school years ago.
Provide transportation as required; wash and clean vehicle; arrange for vehicle maintenance etc

And I am certain there are a lot more to add, because it never stops.

cheers
Boronia
 

Aisling

Registered User
Dec 5, 2015
1,804
0
Ireland
Here's an odd question. I am trying to put together a list of all the things that I now do for mum due to her advanced dementia. It sounds easy, but I wanted your suggestions to cover the things that I might forget. I want to have this exhaustive list in my mind as defence against "the invisibles" when required.

Things like housework (though obviously I need to be specific: ironing/cooking/cleaning etc)
Organising all medical appointments
Getting mum to said appointments
dealing with "officialdom" (again, I need to be specific here: DWP/Blue badge/AA) etc

Can you help me put things together? obviously you don't know exactly what I do, but I am betting that most of you do the same....

Many thanks....:D

Am glad you have loads of suggestions for your list. Am a bit lost as to why you have to notify the invisibles? Sorry.

Aisling xx
 

Linbrusco

Registered User
Mar 4, 2013
1,694
0
Auckland...... New Zealand
Am glad you have loads of suggestions for your list. Am a bit lost as to why you have to notify the invisibles? Sorry.

Aisling xx

I get where Toddleo is coming from.
I (and Dad with MCI) are at the stage where we need to look at Respite Care if not permanent care for Mum. My sister says Mum is not going into Respite, and not going in to care, and that she is no where at that level.
I'm sure my sister thinks caring for Mum is simply taking over her medication morning and night, and holding her hand when going out and crossing the street, and helping her when grocery shopping.
I have looked at writing down a list of all that I do, so that she is aware that it is so much more, and that includes my husbnad and 2 teens having to watch that Mum doesn't go wandering when I'm not here or at work. ( Mum & Dad live behind us)

Apart from Mums Alzheimers, I didn't realise how overwhelming it was organising another household, plus bills and maintenance, and health appointments for Mum & for Dad.
If not mentioned above, another thing I would add if applicable is if there is some kind of family gathering or outing.
A few weeks back we had a family reunion. It was up to me, to make sure Mum had a new outfit, her nails were cut, she had her hair done, hair removal cream for her moustache ( mum says she hates looking like a man :rolleyes: ) had had a bath, put some smellies on, her earrings in, an incontinence pad on, the right shoes on, everything packed in her handbag etc .... everyone commented on how well she looked and how lovely she looked.... which in turn seems to signify to them that there is nothing wrong with Mum :rolleyes:
 

Onlyme

Registered User
Apr 5, 2010
4,992
0
UK
I think you should add

Daily stripping bed, washing bedding, drying bedding, making up bed

Every time someone enters and leaves the house the exits must be checked to make sure they have been secure so Mum can't get though them unnoticed.

Phone to be hidden after every use

Keys, phones, post, house phone have to be placed out of sight or they will be hidden somewhere by Mum. Finding them again may takes days or not finding at all. Handbags, wallets, briefcases will be gone through and important documents may go missing so these must be near the owner at all times unless under lock and key.

Hourly check that power switches have not been turned off. Eg. Freezer or fridge.
 
Last edited:

Toddleo

Registered User
Oct 7, 2015
411
0
thanks!!

Am a bit lost as to why you have to notify the invisibles? Sorry.

Aisling xx

You are all fantastic, some brilliant suggestions there.

Don't worry Aisling, I don't actually have to report back to the Invisibles, but I am a firm believer that sometimes it's better just to be prepared. One gets the feeling that some family members just don't fully appreciate what us carers go through on a day to day basis - although they may say that they do (if you get my drift!)

Thanks again wonderful people, we're a busy bunch aren't we!
 

Aisling

Registered User
Dec 5, 2015
1,804
0
Ireland
You are all fantastic, some brilliant suggestions there.

Don't worry Aisling, I don't actually have to report back to the Invisibles, but I am a firm believer that sometimes it's better just to be prepared. One gets the feeling that some family members just don't fully appreciate what us carers go through on a day to day basis - although they may say that they do (if you get my drift!)

Thanks again wonderful people, we're a busy bunch aren't we!

Yes, I now understand. Better be prepared. Some family members and invisibles have NO idea. Put everything in your list.

Loads of support,
Aisling xx
 

Earthgirl72

Registered User
Feb 2, 2016
135
0
Don't worry Aisling, I don't actually have to report back to the Invisibles, but I am a firm believer that sometimes it's better just to be prepared.
Thanks again wonderful people, we're a busy bunch aren't we!

I know this one! I actually write everything down, just in case. Just in case of what I am not sure but I feel more 'armed' if I have a record of what I have done. You have to love the invisibles :rolleyes:
 

Onlyme

Registered User
Apr 5, 2010
4,992
0
UK
I know this one! I actually write everything down, just in case. Just in case of what I am not sure but I feel more 'armed' if I have a record of what I have done. You have to love the invisibles :rolleyes:



You do don't you because they have seen an advert showing grandad sitting down with his family or read an article in a magazine in the Dr waiting room so the know everything there is to know about dementia.:mad:
 

Toddleo

Registered User
Oct 7, 2015
411
0
I am pleased that I posted now!

Some great responses and I feel that you get where I am coming from.

To be honest , maybe it's not about the invisibles at all (or maybe it is! LoL)

It's more about me being a list and stationery freak! When I am fed up to the back teeth and bored rigid of responding to mums questions about "why are there are so many of those people on the orange box in the armoury" while she paces around the room, ( who knows what that is all about, but it's the current fixation...) I can sit with my new notebook and pen (heavenly) and construct lists about "what do I do all day......."

Keeps me sane anyway, am I the only stationery freak....I have a feeling that I wont be:)
 

MollyD

Registered User
Mar 27, 2016
1,696
0
Ireland
The things they never tell you in De Mags

[/B]

You do don't you because they have seen an advert showing grandad sitting down with his family or read an article in a magazine in the Dr waiting room so the know everything there is to know about dementia.:mad:

Oh, God, yes. I've someone who regularly pontificates to me in an all knowing fashion, "d'you know what you should do..." or " d'you know what you need to do..." (statements not questions) and disappears as soon as they've appeared in a billow of feel-good promises.

That could go on the list too!

1) Biting one's tongue as hail fellow well metters give fly by night easy-peasy diagnoses. "D'you know what that is..." followed by a potted diagnosis and cure.

2) Sitting, disappointed, as a kind relative visits mum and keeps me there for over half the time chatting and getting updates and giving me platitude tips so that sometimes I don't actually get away for the break they came to cover so that it's not worth my going out at all.

3) Listening to how they'd find this caring lark straightforward because they had children (I didn't), so obviously, I couldn't cope as well. "It's just like minding a baby..." (Noooo, it. is. not) Then listening to the trials they went thru *16 yrs ago* feeding a baby at night. Time and time again. But when they stayed with mum for longer than an hour on their own (which hasn't happened since their hospital visits with her), they are left reeling but don't recall that when imparting their wisdom next time to me.

4) Smiling graciously when an invisible pops into mum *while* a paid for carer is there rather than tagging it on to the end of the hour so I could get a longer break despite saying they'll cover no problem.

5) Swallowing someone's saying "she was *great* while I was with her" as mum miraculously holds onto her senses till I arrive back and collapses out of Hostess Mode, once the kind cover leaves, and headlong into a serial fixation on something or other.


Bah humbug. Hurrumph. lol.
 

Toddleo

Registered User
Oct 7, 2015
411
0
Good golly Miss Molly - you have summed it all up sooooooo well :eek::mad::rolleyes:
Yes she has. Actually I wanted to paste an image of some flowers to her, by way of a little "we understand" gesture - but I couldn't work out how to do that (what is the URL of a picture anyway?...Lol)
 

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