How have others organised their support services?

[taniaaust1]

After years of battle trying to get my ME/CFS needs met, Ive finally been granted what appears to be enough support to fix my whole life up and get the services I need so Im now currently in the process of trying to get my head around how I'll organize my support hours.

I are interested in hearing how others have organised theirs support hours and what you find works best for you with this illness or what things havent worked out well with how you've tried to plan this. Please let me know if you see any issues with my current thoughts in the way Im thinking about trying to put this together for myself.
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Ive been given what equates to my core support services, services which would be be about 4-5 hrs per day if I divided it up between each day (IF Ive worked this out what the funding budget giving me right). This sounds a lot but when I put it to my actual needs, I think that is going to go easily.

Ive started off with trying to divide the given hours into time blocks for different areas of my life which need support over each week (once Ive finished this whatever time I have left I will have for appointments and other things).

Time Block 1 - Morning Routine session. 11.30-12.30 (1hr?? will that be enough time? Anyone else get a worker in for a morning routine which includes what I have below? how long does it take?). Im thinking best time would be 11.30-12.30 as sometimes do not wake up till 11am due to my insomina and then I have to hydrate myself before I can get up or think about eating at all (eating when dehydrated can flare my POTS worst).

What I wish to have achieved in Block 1

1. I want to use it to try to get into a more normal persons daily routine. Currently I only get dressed sometimes as little as once a week when I get taken shopping due to the amount of energy it takes. I sometimes need help getting dressed.

2. I want to start eating around the same time in the mornings (right now my eating is all over the place which is very bad for my blood sugar issues and gives me more symptoms).

3. I want to not be burning my breakfast many mornings (which then causes me then not to eat). Help doing breakfast.

4. I want to set up for my whole day in this time block eg if I am getting taken shopping that day, I need help with my shopping list and getting my gear ready to go out for the trip (I forget important things).

5. The bed made daily (right now my bed only gets done once a week with help)

6. I need someone to do dishes after I ate breakfast (I cant access my sink in my wheelchair as I need legs up due to POTS when sitting)

7. Worker to give me morning reminders of things I often forget eg for me to feed my cat and wallabies.

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Time Block 2 - Kitchen/cooking help 9.30pm-10.30pm 1 hr daily

Im wanting this this late as with the late in the day breakfast start, all the times for my meals are thrown out compared to a normal persons. Most people have 5hrs between each meal. Right now some nights I actually are not eating dinner till 3am. I want to endevour to try to eat dinner earlier in this time slot.

Unfortunately as this is outside of normal working hours at this time it will use up more of my funding time but this is the earliest I'd manage eating dinner. I also have more energy at night so its a better time for my cooking sessions too due to this.

1. Help me make dinner
2. Make sure all cooking gear gets turned off (Im often leaving things on all night, huge safety risk)
3. Do dishes (I wont be helping with that as I need to rest with the POTS after eating).
4. Give me reminders - feed cat (I sometimes forget and then cat wakes me up!),
- Sundays - make sure bins are out
5. Make sure my house door i locked for the night (I keep forgetting to lock my house - safety risk).
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Time Block 3 - Cleaner session 1.5 hrs per week (I'd like this put on my ME rest day which is a Wednesday as obviously I dont have to be involved in these things at all so it can be done on the day I often spend all day in bed midweek which is a recovery day for me after Mondays and Tuesdays and so Im ready for Thursday and Friday).

Im wanting this session weekly and not fortnightly due to my collapses which can leave me on the floor for hours and also due to my asthma which is set off by housedust and dust mites.

-Wash floors (right now my floors havent been done for 5mths and are covered in vomit and shit and so terrible.
- vaccum
- dust
- clean bath, toilet, basins
- ironing (can be done if any time free)

(before I got sick I used to work as a carer and a cleaner myself so I know I have the time it will take for one to do these things in this block).

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Time Block 4 - Clothes washing plus 30mins twice a week.

I think adding 30mins onto my morning routine time twice a week would give enough time for this to be done in that time slot. Twice a week as it would be one load of darks washed and one load of whites being washed every week. (I have huge issues right now with all dirty stuff built up over time as currently I only get one load of washing done a week with workers and hence I have things right now in my laundry which have been there dirty for past 6mths or more which havent been able to be washed..things need eg my warm blankets, the lambswool from my bed etc etc.

Im currently often out of clean clothes due to having to wait a fortnight for either the whites or darks to be done.

I can not use my own laundry room due to mold issues I have so reliant on workers for that who use the back door into that room as I have the other door taped up so not to affect rest of my house.
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Time Block 5 - Getting taken out shopping. (I need to talk to my current shopping workers about what I need here as I think Im using up a lot more time then I think, they are usually going way over time).

I require two workers while at supermarket as one has to push me and one has to push the trolley as I have a special wheelchair with raised up legs so it doesnt fit onto the disability trolleys which those who have wheelchairs sometimes use.

Big issues with this as the time it takes to do all my shopping (cause Im on a special diet as I have many dietary issues) and I cannot stay upright that long out so my shopping if Im to be present for it all then needs to be divided into two lots (and Im not currently allowed to hand workers money to go and do any for me at all). So this all needs more sorting out. I so hope they come up with a suitable solution for this

Note - I have trouble with internet shopping and have gotten hackers into my computer as I screw up on it a lot and end up downloading viruses, last year I spent around $500-$600 getting virus issues fixed again (and then ended up accidently deleting an anti-viral program I'd paid extra for). Every time Ive tried to get my normal shopping online its been disasterous due to different issues Ive had.

Anyway.. Im thinking about two blocks of shopping time which can be also interchangable (so if im to unwell to go or its too hot for me to go, i cant go outside without a huge collapse risk when its 30C and up... and hoping I will only need to be present for one of these as Im not really well enough for two trips out of the house to buy shopping.

For the block where Im taken out to get things I need 2 hours with one worker and 1 hour with the second at the same time. = 3hrs per week (that's what I get currently but it doesnt work at all as its not enough support time). Some of that 3hrs will be used making sure I have all I need before leaving the house and helping me get what shopping we get away after the shopping is done.

Im only comfortably out shopping in the wheelchair without starting to crash for about 90 mins.

second shopping block????
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Block 6 - Various things not including appointments (is 1.5hrs per week enough???)

- Help with general tidying (I dont manage to keep up with that so things everywhere)
- Ironing (I dont think there will be time to do it in cleaning block)
- Help with any paperwork stuff Im stuck on with anything
- Shed cleaning (its a huge mess currently and cant get in it without tripping over and walking on things)
- Gardening

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I dont know how much of time Ive accounted for yet with all these things as I weekends may use double funding??? and at night I'd use more too?? (Ive got to fund out if the rate doubles or what?)

Is this workable?? any issues?? anything important anyone can see Im missing?

 

[HeleneG]

I have 2 helpers. Once a week my housecleaner cleans my house and does a week's laundry and puts it away. Three afternoons a week I have a shopper/cook who prepares meals for 2-3 days and cleans the kitchen. Either of them will do other small chores if I need them. I have a Mac computer so I don't get viruses. I do a lot of shopping online. I used to buy groceries online from Costco, but my cook likes to buy small quantities of fresh food so I don't buy from Costco much anymore. Right now that takes care of most of my needs. I don't have a wheelchair, but I installed stairlifts because I live in a 2 story house. That works for me right now.

 

[alex3619]

I would think that a pre-lunchtime helper to cook meals would only be needed once a day. Cook and serve lunch, and put dinner and breakfast in the fridge. Its very important though to find a good cook, one that stays with you, as someone new has to learn all the food limitations and special needs all over again. If this same person also goes shopping for fresh ingredients then they will also know what you need to buy.

 

[taniaaust1]

I have 2 helpers. Once a week my housecleaner cleans my house and does a week's laundry and puts it away. Three afternoons a week I have a shopper/cook who prepares meals for 2-3 days and cleans the kitchen. Either of them will do other small chores if I need them. I have a Mac computer so I don't get viruses. I do a lot of shopping online. I used to buy groceries online from Costco, but my cook likes to buy small quantities of fresh food so I don't buy from Costco much anymore. Right now that takes care of most of my needs. I don't have a wheelchair, but I installed stairlifts because I live in a 2 story house. That works for me right now.

Hi Helene, it sounds great only having a cleaner having to come in for once a week. I could think about getting my most of my cleaning and my washing done in one big block and that's something I had not thought of before. thanks

Do you do all your own dishes? or do they sit there for a week waiting for the clearer to come and do them? its a pet hate of mine having dishes sitting there for a week often get smelling or attracting ants or other things.

Mac computer so one doesnt get viruses. That sounds like a great idea and I didnt know about Macs. If my current computer wasnt on loan from friend I think I'd seriously think about getting a Mac seeing Ive had so many virus issues which are expensive to fix.

Do you just then microwave all your meals once prepared?

 

[taniaaust1]

I would think that a pre-lunchtime helper to cook meals would only be needed once a day. Cook and serve lunch, and put dinner and breakfast in the fridge. Its very important though to find a good cook, one that stays with you, as someone new has to learn all the food limitations and special needs all over again. If this same person also goes shopping for fresh ingredients then they will also know what you need to buy.

thanks alex.

I still though would need a worker coming at night anyway to check things like my door is locked, that I are not collapsed on the floor etc and I think the minimum time someone can come is 1hr so cant really get away from having someone come fairly late for an hour each night. My elderly friend when he's not away currently does a nightly phone check up call on me to make sure I are not unconscious somewhere or stuck somewhere not able to get to a phone but we are needing to get someone else filling the roles he's doing when he can.

Some of what I like to have for breakfast doesnt do well reheated in the microwave eg I like eggs done in various ways and have these thin pieces of steak with it a couple of times a week. (the steak goes very tough and not nice if microwaved). Im supposed to have meat or eggs with every meal due to my insulin issues so cant have things such as cereals, toast etc.

eggs I think can be poached in microwaves, soft boiled?? in them. Sometimes I like to have sausages with my breakfast.. do these do okay heated in microwave or does it make them not so nice????

The things I have for breakfast are fruit salad (but Im supposed to have eggs or meat too so that is only supposed to be a part of my meal), fried mushrooms, eggs- fried, scrambled, poached or boiled (whatever im in the mood for at the time), sausages, fried tomato are my breakfast foods.

the fried tomato would reheat in microwave, the mushrooms ?? (probably? or does that change them?), sausages (im not sure if they would be as nice?? maybe), the steak (no). So this could be probably done with someone only helping with breakfast if I wanted steak.

My lunches I plan to use the microwave for lunches so have no support time put for those. I sometimes get to buy low carb soups I like and those do microwave well .. (the shop only has those during winter only so I'd need my cook to make these at other times of the year in one of the cooking sessions eg the dinner one, there wont be enough time in what ive allocated for the breakfast session unless I put more time to it. (Im trying to keep that time slot small as that early in morning Im not at my best so dont like people about much then)

I havent found low carb soups I like at the normal supermarket so there is just this one speciality shop I get these at right now but none other seasons is it sold at though I've tried to convince that shop to sell its soups all year).

Soup, fitattas (they do microwave well too) and certain salads (most salads I cant eat due to the carbs so have trouble finding those I like a shops at times..supermarket sometimes have the ones I buy but sometimes doesnt) with cold meat are things I tend to like for lunch. So none of that needs cooking in a pan so a microwave lunch works for me. Hence why there was no support time I put for lunch.

or sometimes I do skip lunch and just snack on things like nuts, beef jerky instead.

For dinner I tend to like roasts (best roast the one I do most often) and steak is a big dinner thing to me. (Beef roasts go often dry or tough when you heat those in microwave and steaks... I wont eat microwave steak, Im fussy with steak and eat my steak medium rare, I dont like it cooked through which the microwave does). Half of my dinners consist of beef roast or steak.

I buy top of the range meats (I wont buy most from the supermarket as their meats are often tough and I then end up not eating it). So I get my meats from the local butcher who has won many awards for his meat) as I like my meats tender. It's a big difference though can be more expensive

I also like my roast veg crunchy. I currently buy precooked roast veg which the deli part of one of my supermarkets sell but still cook it again in the pan as I dont really like it soft with the microwave heating so even after reheating it there It still goes into the pan.

and things brocolli and cauliflower.. cause Im not too keen on them (but they are one of the low carb vegs Im allowed to eat thou so do though i cant eat too much due to they too can affect me negatively due to a gene mutation I have) I like to brown cheese onto them to fix their flavour. (Im not sure if one can brown cheese in microwave??? maybe one can, that's something Id would like to know seeing Im trying to figure out what I'd like eat which can be done in the microwave).

Does anyone know if one can brown cheese in microwave to get that browned cheese kind of taste??

My appetite is often not good due to just feeling unwell and hence foods need to be quite appetising to me before I'll eat them. It makes me quite fussy with things. I end up wasting quite a bit of food here when its not how I like it eg overcooked eggs (yolk is not runny), tough steak and throw out tons of meals I burn. I end up not even eating half of what I cook as I get distracted or forget about it and wreck or burn it. (I probably throw out 2/3rd of what I try to make)

Another issue I have which I dont think Ive mentioned is that I often I'll find meals in the microwave that I put there for lunch but then forget to eat them and find those 24hrs later (so then have to throw them out too). That's another thing someone coming to do cook stuff for 1hr at night can also check that I dont have food I was doing for lunch and forgot about sitting about. (Ive done that twice in the past 10-14 days. found my lunch the next day sitting in microwave still, very frustrating esp if its something I was reheating which I previously had gone to great effort to cook)

Life was so much easier before I had all these dietary issues and could eat normal canned foods like baked beans, spaghetti, lots of other canned things I use to eat (all which did microwave well), bread- sandwiches/toast and cereal.. none of which I can eat now with my issue with carbs. I could of got away then with just having someone come once a day to cook some dinner

 

[alex3619]

I was only addressing cooking as I had no suggestions on other issues. Food can be put in alfoil or oven bags and reheated in a regular oven if the microwave does not produce a good result. If the cook packages it that way then they can just be put straight in the oven. Remembering to set a timer is my biggest issue with this.