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My Mom has Parkinson's dementia and started using independent caregivers. Trying to care for my mother is getting harder and harder all of the time. We have stopped using home health care agencies because of the quality of care givers that we were getting plus the expense so now my kid and I have gone the independent care giver route. Now they are bailing on us and we face possibly facing the shifts ourselves. My kid is in college and was getting great grades but now this semester she is not and that worries me. I am trying to hold it all together and using mindfulness, exercise, proper nutrition, and positive thinking.
I have an older brother who lives in another city who does not want to be bothered with the details of what we are going through. He just visits once a week for about an hour or two. The younger brother who lives in the same city, just 15 minutes away, has stopped communication with my mom and us before the holidays.
So basically my kid and I are all alone in this............
Can anyone offer us some advice, suggestion, or resource?

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When my dad was ill we had vitals logged so that I could show them to the doctors and hospice nurses. The care givers know to call me when something is low and when something is wrong with my parent. Also when I visit I do my rounds about the home and check for things that need to be added to the list. My brother is the Power of Attorney and we have been giving him all of the receipts for about 2 yrs or more.
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The logs are a good idea, we have the caregivers mark her vitals in the books too so we can show them to the doctors. They also keep a running list of supplies needed. I would just be careful to show how you are spending the money in case family members start asking.
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Thank you Greenie you have hit the target and nailed it!!!!!! We have gone through agencies where many items were stolen and treatment of our loved ones were disrespectful and they also had no dignity for them as well. Yes it is a lot of hard work going the independent route but well worth it because we know what we are getting. We do phone interviews followed by in-person interviews and then background checks.
We have outlined duties and responsibilities for both day and night shifts. We even have separate day and night log shifts for the care givers to write on and also showing them what is expected of them during their shifts. We are working very hard on this but then so did my parents while they raised us. It is out of duty and love that my kid and I are doing this.
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The problem with agencies- and I have hired several- is that they do not pay well and barely train their workers- and even if they are bonded, we still had a things stolen (my dad's wedding ring from a drawer) right after my father died and chaos ensued. We ended up having to do all the scheduling too. The advantage to an agency is workman's comp and back-ups, as zoo keeper says. We have solved the second problem by delegating PT people as back-ups and so far it has worked. Training is no big deal, many have already been trained elsewhere- and we can pay a decent wage so you get the more stable people. Background checks are easy to do and we use a payroll/tax service. It is more about attitude than anything else- hire good people, compensate them fairly, and treat them with respect and they will stay.
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Going the independent caregiver route is so full of risk. I hope you realize this. It's not just the care issues that you will need to contend with, and in getting valid accurate references, you will also need to deal with taxation, withholding, etc, and that can easily get out of control or get screwed up. Are the people you are hiring bonded? Are you ready to deal with potential worker's compensation issues, if they get injured caring for mom? And you will be constantly recruiting and training new workers on your own! It's a lot of extra work, too -- do you really need to add that to your burden? If an agency sent you bad workers, change agencies! There are dozens and dozens in every market in the US to choose from. Going the independent route, you are actually more inclined to have to those workers bail on you, and then you're stuck without any help until you hire someone else. An agency would have someone else there the same or the next day, with little or no interruption in service. And you could be spending all the time you're spending on recruiting and retaining workers now, on overseeing the work they are doing and making sure it's being done the way you want it done. And you won't have to deal with any of the risks.
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So sorry if I sounded like I implied you are not a good or dedicated mother. Did not mean to do that. Only meant to support solutions that would take stress off the both of you to give her time to pursue her endeavors. Anyway, it sounds like you made the same choices I did to go independent and glad it is working out. As to resources, there is always the tax issue for in-home employees and I use Home work solutions, a company that handles payroll and taxes. I am also looking into added home insurance, in case of caregiver accidents. It may be worth to check on Medicare and what they offer in-home. I think they will send a PT and OT to do evaluations for free. To save money, I also have meds delivered through insurance plan and since I am not much of a cook, food delivered through Magic Kitchen which offers pretty good tasting senior sized portions. Good luck!
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I used to be a care aide - I did not have training but answered people`s ads on CL. I worked for three different people who didn`t always treat me well and the pay, while better than retail, was not great. However, I loved my job because I am a natural caregiver. I never missed a shift or showed up late and was pleasant and did whatever they asked and loved and cared for their pets as if they were my own. But people did not seem to appreciate these attributes until I had to move on. When I helped my mother find caregivers for my father, we had a very difficult time finding someone good. There were a couple of gems, though, and we made sure we let them know. Caregiving can be draining even if you`re being paid for it, because even when you know the person is ill and in pain, being treated like a servant can be wearing. It was my experience that because the people I worked for did not go out very much and were frustrated by their situations, they took out their frustrations on me and the other caregivers. While I would tell myself that and swallow the hurt, it really did wear on me.
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I respect both of your responses but it has nothing to do with my mother. I have outlined responsibilities to the care givers. The home health agencies send care givers that simply are lazy or don't care or are not dedicated to the field.
My mom just has short term memory loss and is a high fall risk. The agencies scam you with a big "sell" but do not deliver time and time again.
We have chosen to go through the independent care giver route and have found a middle-aged women who has proven to be a godsend and completely understands my mom's situation and doesn't take it personally. She also has a great work ethic which was one of the main problems with hiring home health agencies. I have seen it first hand time and time again.
As for my daughter and her school, it is her top priority and I have told her so and she realizes it. She is mature beyond her years.
We hire agencies for respite NOT for respite for the care givers.
This website was not what I thought it would be. I was merely asking for resources or solutions or maybe anyone else out there who might be in our situation.
Our situation is starting to come together with a good care giver team without the home health agencies.
Please don't worry about my daughter ....I am a good mother, always have been, and always will be.
Thank you
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Jeannegibbs is right on target, why are they bailing out? Does mom need meds to calm her down? Do you spell out responsibilities? Do you complain and criticize caregivers? Are her medical needs complicated? Wound care, Hoyer Lifts, Transfers, Bathing, Toileting, Feeding all require training.
Caregivers often quit when they are hired to care for a patient but end up being housekeepers+cooks+laundry+dog walkers+gardeners.
If they continue to leave on short notice, it may be time to get mom to a facility where a TEAM of professionals see to her care. It's not as easy as it looks.
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Why are caregivers bailing on you? Is dementia making your mother particularly hard to care for? Or is this just the typical turnover in the industry? Is the agency you are now working with able to fill in quickly when a scheduled person "bails"?

Have you considered everyday8's suggestion of a day care center? Usually they provide transportation both ways, a simple breakfast and a hot lunch, and extra optional services such as help with showering and toenail care. She would go to her "club" in the morning, and come home to her familiar surroundings in the afternoon. This would reduce the number of at-home shifts you have to fill. This was an excellent option for my husband.

Whether she goes out for part of her care or relies strictly on in-home care, there always has to be a contingency plan. What about days when she is sick or not up to going to the day care center? What about when the afternoon shift person has the flu -- and there is so much flu going around the agency can't provide a fill-in? Are you able to fill in at a moment's notice? I hope your kid is not put into the situation of needing to fill in. As you are finding out, providing at-home care is more than just being able to afford it (though that is huge), it is also about being able to manage it.

I understand why you want Mom to be able to stay at home. It is a commendable wish. I sincerely hope you are able to make it work, while also achieving the equally commendable goal of protecting your kid's educational life.
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My mother recently lost our father and to leave her home that has all of her lifelong belongings plus the pictures and memories of my dad would be detrimental to her in every aspect of her health. We have tried home health agencies with my dad and now my mom and they are completely worthless. So my kid found an agency that just deals with independent care givers and we are in the process of filling up the schedule. The reason why I posted on this website was to find out if there were any other people in our same situation that have dealt with home health agencies and are struggling.
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We stopped using agencies due to expense and they were not doing a great job so we hired our own team from Craigs List. We are paying them more than an agency and still saving money. We only hired experienced people and did the background checks ourselves. However, it sounds like assisted living may be the answer for you- they do have some good places, sometimes in private homes. You could still be very involved but less stressed and your child would have priority, as it should be. Best of luck!
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So sorry you are going through this. Questions: is your mother is her own home? Did you try word of mouth recommendations from friends or business owners? I found a wonderful independent caregiver through my stylist. Ask around at work, or at your art class, yoga class, exercise class...any where that you have acquaintences. You'll be surprised at the number of other people who know of 'someone'. Then do your homework and get references from the people they work for. Another option is a group home. The atmosphere is more like being at 'home' and the patient to caregiver ratio is excellent. There is another option if your mom is not 24/7 care yet. An adult day care facility. Your mom would go and stay all day (doesn't have to be every day, but it would help) and be home in the evening and at night. Some adult day care facilities have scholarships and grants, some funds might be available to your mom if she is a veteran.
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