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Thread: Need help and ideas please

  1. #1

    Need help and ideas please

    A couple of questions if you don't have time to read the long version:

    1) Does anyone know of a vacuum / mopping device that can be either operated on its own, or is possible for someone with *very* limited walking, full time use of a walker, and use of only one hand? I'd prefer it to be under $100. The whole house is tile floor and we have a dog.

    2) Any ideas where to get pre-done, healthy meals? My ability to cook healthy meals right now is zilch, but I have no leads on how to hire a cook (state says that we are not eligible for help). I'm considering trying something like NutriSystem, where the meals are all pre-planned and you just buy the box... I have very limited (and virtually no ability right now, as of the writing of this post) - to cook / prepare food.

    3) How to convince aging parents that the current arrangement of relying 100% on one daughter (other family members not able to help beyond what they are already doing in other roles) - all day long, at beck and call, is leading to burnout and huge struggles for me?

    4) Anyone know of a program that may help either me / my parents in order for me to work outside the home? I have a couple job leads, but if I cannot get the house set up ahead of time for my parents to be better self-sufficient, working outside of the home at another job will be difficult to impossible.

    * * * Long version below * * *


    I am the caregiver for my aging / disabled parents, in addition to having my own disability. It has become apparent that I need some guidance in this topic.

    My mom is of relatively wise mind but pretty much fully physically disabled / dependent on us for many things due to advanced MS. She has a walker, and toddles around the house with it, but daily activities are watching TV and, with encouragement, a few daily tasks like paying the bills, etc.

    Approx 18 months ago my father, who was my mother's primary caregiver (and fully able, except for his aging body) - took a fall and is now a TBI survivor. Three months after his fall, I ended up quitting my job in order to care for both of them full-time. He now has the ability to drive on short trips but long trips or trips when he's tired, I handle. Mom no longer drives.

    I have disabilities myself, including Cerebral Palsy (part time use of a wheelchair, forearm crutches, and/or service dog trained in mobility + medical alert), various Autism diagnoses, and a few psych dx's under the Autism umbrella.

    I have been at their beck and call for roughly 12/15/18 months. I feel burnt out. Housekeeping often suffers because I don't have energy to do it for 2-3 weeks. Recently I got myself too tired, overdid it with my own disability, and my body revolted and put me in bed / the couch for a good week. I am now finally getting enough energy back to do a very short to-do list of daily tasks (like 1-2 things that MUST be done) - but other things still take too much energy.

    My family is opposed to bringing any outside help in, even though I have had tough conversations with them that tell them that I am getting burnt out, that I need one-time help, etc. I recently called around for housekeeping quotes; I need about 300-400 sq ft of tile floor vacuumed and mopped. Quotes were $140 to $180 just for them to come in my door, even though I mentioned the small square footage that was actual.

    I have about $25, maybe $30, of income that I can devote to housekeeping right now. Everything else is out of the budget at the moment.

    My disability makes it very difficult for me to have the energy to cook / eat. I either have the energy to cook but not eat, or eat but not cook...I have a very poor diet as a result, and Mom & Dad believe in fast food as a staple (now it does not fit in their budget, and I've put my foot down).

    I have checked with social workers and the state I live in. I have no ability to get paid for helping my parents because they are above the asset limit. Because I live with my parents due to my own disability, I cannot get help for myself, i.e. housekeeping, cooking.

    I am due to consider starting a new job / follow a job lead but I cannot do that if I am unable to care for myself. I have no friends in the area because they have either all moved away, died, or exchanged harsh words with me when I graciously went to help them (and then I decided I did not need to continue a friendship with folks who could not appreciate me).

    My parents are having money issues at this time and are not able to afford to hire additional help (we already have some paid help for my Dad to continue his hobbies). He is still "financially able" according to records but there's been a lot of Us: "you spent money?" Him: "Yes, I have a lot of money." Us: "No you don't, you're on fixed income now." Him: "Huh?" It seems the TBI has impacted his ability to properly budget now that he has been moved to SSDI / retirement status.

    I have very limited income and energy. I don't know where to turn beyond where I have turned already, and this is *very* hard for me to put online, but I feel like I have to tell this to someone, and y'all seem like a treasure trove of resources and "we've been there, or we're here, and this is what is working for us."

    Thanks for listening to my drabble and disaster.
    Mystery

  2. #2
    A couple of thoughts...

    Have you considered looking for a live in caregiver/housekeeper who could both provide care to your parents including meals, med supervision, and care for you as needed? Not from an agency, but private hire. If other family will not help out, then they should chip in to help with the costs on this. Thank them for their input about not hiring someone, but tell them that if they cannot step up to the plate and help, take your parents into their home, etc. etc. that YOU expect them to help out with this type of expense.

    I would also tell your family and your parents that you cannot continue on this road, and if they are unwilling to make changes, you will have to work at finding other situations for your parents to include assistive living or even nursing home placement.

    Are you working with Dept. of Vocational Rehabilitation on a plan for returning to work? They should be helping you develop a plan, and may provide some supportive services such as transportation.

    (KLD)

  3. #3
    Quote Originally Posted by SCI-Nurse View Post
    A couple of thoughts...

    Have you considered looking for a live in caregiver/housekeeper who could both provide care to your parents including meals, med supervision, and care for you as needed? Not from an agency, but private hire. If other family will not help out, then they should chip in to help with the costs on this. Thank them for their input about not hiring someone, but tell them that if they cannot step up to the plate and help, take your parents into their home, etc. etc. that YOU expect them to help out with this type of expense.

    I would also tell your family and your parents that you cannot continue on this road, and if they are unwilling to make changes, you will have to work at finding other situations for your parents to include assistive living or even nursing home placement.
    Very good thoughts. Yes, the idea of a private-hire live-in caregiver for all of us may be on the horizon. It has not been a popular idea when discussing it with my parents, but that may be where things go. If I do go that route, I'll be certain to search contracts and things like that (I know that there are a lot of good resources here).

    Another friend mentioned tapping into youth and/or church group labor for additional help, primarily with housekeeping (and the eventual organization) at this moment. They certainly sound cheaper than hiring a cleaning service at $140 or $180 or even a recurring (but only slightly lower) fee, and they would be a nice step-to seeing where we really need to go.

    Quote Originally Posted by SCI-Nurse View Post

    Are you working with Dept. of Vocational Rehabilitation on a plan for returning to work? They should be helping you develop a plan, and may provide some supportive services such as transportation.

    (KLD)
    As far as working with Dept of Voc Rehab, I have attempted to do so. However, it did not work out well. At the time of application, I was able to work and my family thought they had a plan in place and could manage without me. At the time of acceptance / actually getting into the office at VR (it took three months), I was deeply struggling and my family was too. Even though I tried to ask my counselor for support, and resources, my counselor opted to blame distance (I could not get in to my local office, so I had to go to a further office) as a barrier for finding me a placement, and felt that my family issues were a barrier that I should fix on my own. He also said that I was not employable because I did not have a Bachelors' - I worked successfully in an office environment for several years before leaving to care for my parents. I may not have a B.A., but I have two Associate degrees and a Certificate, and even my counselor admitted I demonstrated that I was quite capable of working in an office environment successfully.

    I received the confirmation that my VR file was closed today, actually. If I reapply, I was specifically asked to reapply to my local office, which has a very long wait time before they will even assist me. I continue to have some job leads (without the help of VR), and I continue to need to get a family plan in place before I can work (but I'm fighting damn hard to follow the leads that fell in my lap at random - I *don't* want to give them up) - so I'm hoping to make something work unofficially, or see what my "private-hire" options are, as I think that's the best that VR can get for me, as well.

    Thank you for your help, KLD, and anyone else that reads this thread. You have provided good input, and I will continue working toward solutions (more potential solutions are welcome!). Even though we are a family that has fallen through the cracks, in my opinion, and even though we are caught in that catch-22 of almost successful but need help to do so, I think there are creative solutions that are possible.

    Thank you again, everyone at CareCure, for being here.
    ~Mystery

  4. #4
    as far as mopping and vacuuming there are robots out these days i do not have one but they are an option you set it and forget it it does it every day or whenever you program it to. i think these are pretty expensive however but worth looking into. also for meal prep what about meals on wheels? i know it gets boring but is there anyway either of your parents can heat soup up and make sandwiches? i would definitely talk with your local disability services office, maybe even asking at your church if you go to one regularly they can provide you guys with some help. given your disability and your fathers disability you both have got to qualify for something. you close with any neighbors or friends who can if needed come and help do light housekeeping or meal prep? I also with KLD you need to have a plan for your parents and it seems an assistive living or nursing home is a better situation at this time.
    Last edited by Smashms; 07-06-2016 at 09:02 PM.
    T6 incomplete from MS and an aortic aneurysm surgery that went bad.

  5. #5
    Senior Member elarson's Avatar
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    I was just going to suggest what Smashm did. The cleaning robots are good, and although maybe more cash up front, cheaper than long term cleaning services. Meals on wheels are also good, or see what local stores and restaurants have that you might be able to order online cheaply that are healthy. I've often been surprised about what I can find that way that may be sold as an individual meal, but in reality is enough to feed 2 or 3 people and is healthy (not fast-food).

    I would also consider some very good financial planning advice. I don't personally know the ins-and-outs for your area or circumstances, but perhaps you can work things out so that you parents can get more help by shifting assets like their house to you. Also talk with the social worker to see if they can help get your dad to understand the situation as it is now about finances. TBI along with any other brain injury can make it very hard for them to understand financial consequences of their decisions.

    Lastly, you may not be able to easily change their point of view, but you can change what level you are prepared to provide help. In your situation I just can not see it being realistic that you are their sole caregiver. I am my husband's primary caregiver, but I also have some outside help, and I am able bodied for the most part, and my husband is only one person. They definitely need to understand that bringing in outside help may be the only way that they do not end up in an assisted living facility.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

  6. #6
    i forgot to add many of the stores are doing grocery delivery these days may want to check into that as well.
    T6 incomplete from MS and an aortic aneurysm surgery that went bad.

  7. #7
    Senior Member Domosoyo's Avatar
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    Hey Mystery,

    I'll just chime in with a nod to a food service called Seattle Suttons or similar because NutriSystem is not a "fresh" food option.
    I have a friend that uses Seattle Suttons and gets fresh meals delivered. I think with any of these services you will get tired of some of the options so any take-out or delivery from local restaurants AND grocery delivery would be nice supplement.

    Depends on where you live....

  8. #8
    Couple of thoughts -- as for employment, you might start by signing up with something like TaskRabbit or a more traditional temp agency, thereby generating some income and beginning to make some local contacts toward a more permanent job. You can post a resume free on craigslist and other sites like indeed.

    Likewise, you can access housekeeping/assistance for your parents a la carte. Often, local universities and trade schools have free job posting boards on line.

    If your dad is spending more money than he has, it may be time to consider a financial power of attorney, esp. if his cognition is becoming increasingly impaired and/or their funds are being depleted too quickly. I would also make sure in your complex situation that both your parents [and you] have current advance directives, Wills and health care POAs, and consult with a social worker at any clinic(s) you or they attend, as well as your city's Senior Services department, as to local adult day care/recreational programs/respite resources that are not tied to assets. Many communities have these, some through assisted living facilities.

  9. #9
    Thank you all for the feedback; my apologies that I have not been back to this thread as often as I had hoped.

    In some ways, things are getting better. In other ways, things are stagnating, and in some cases, I've just given up.

    A significant time after I had asked for help, a social worker got back to me. Apparently, there is a state agency that lists caregivers who work for money that is cheaper than what it would cost to hire a formal cleaning service. That is a resource I haven't checked out. That's the only thing that's formally available in this state to us (we'd have to private hire).

    When I put my foot down (and after I got enough energy back to go shopping) -- I got a lot of meals and such that were on good sales. I now have enough quick / easy food for me, and it's probably a little better than fast food. Likewise, the parents also got a variety of food on sale and our cupboards are full. (I shop in bulk when I have the energy to shop.)

    As far as cleaning / robots, what I can find is out of our budget. Mom has agreed to sweep the house, half at a time, a couple times a week. This doesn't forgo a deep cleaning, or a major cleaning when there's something more than dog hair on the tile floor, but at least it's a start, and it's often a lot of help to me.

    I have finally been able to get cover letters, r?sum?s, and such readied for a couple of jobs, and dropped them off. I have also done my best to follow some other leads, but am still waiting to hear back. I need to find the energy to apply to a few other places, but am struggling with a lot of "this job requires you to lift 50 lbs" -- and when I check through the store, a considerable amount of goods are 30 lbs, not 50, and I can lift 30...but keep getting turned down because I can't lift 50. I'm beginning to think that the ADA Title I / EEOC wrote it in favor of the employers. Office work is very limited here, and we have a lot of issues getting into buildings, including the fact I have been unable to find a ramp at our brick-and-mortar temp agency. I am now trying to work through that agency via email to see if they have any work that would fit my capabilities.

    I had not heard of TaskRabbit. I will look into that; thank you.

  10. #10
    Moderator jody's Avatar
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    for vacuum I use the oreck upright. it can be used sitting on the floor.
    its very light. I got the industrial cord, and it is heavier than the vacuum. I have limited walking ability and vacuum in a circle around me, take a step and repeat.
    it can be done from a walker or a wheelchair too. my lovely oreck is the only vacuum iv found to be good for me to use. Iv tried a lot of different vacuums in 16 years. the only thing is I need a little shop vac to get places and upright cant.
    the handle on the new Orecks is good for a weaker grip, and helps prevent fatigue because its chunky and well designed.
    Im so happy to have it. it's the best vacuum ever.

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