The weight of the world on my shoulders

LGCRZ · April 2

Hi - I'm new to this forum. Warning - this is going to be a lengthy post as I just need to let some of this out** Thank you for being kind.

I finally sat down and joined because I am at a breaking point with being a caregiver to my mother, a mother of two teen girls, a wife and the primary (and only) income earner in my household. My mother lives with us after we moved her out of assisted living six months ago. The facility was not ensuring she was eating regularly or bathing/dressing etc. and it was overwhelmingly expensive. So we bought a new home with an in-law suite and I became a full time care giver. Having just read through the FAST scale, I think my mother is in late stages of 6. She is still able to walk and talk, but her personal care is non-existent and it is a struggle to make sure she is clean and toileting etc. I need to bring in some professional care to help me, as my work requires me to be online all day (~12 hour days). All the care companies I have worked with in the past send young people with no skill or experience with demensia. So I suppose my question to this group: what should I do? Does anyone know companies who do have skilled nursing or help that can back me up? I can't ask my husband and kids to help with personal care... and I am so overwhelmed that I am starting to falter. Any words of advice would be most welcome while I navigate this never ending challenge (I've been supporting my mother single handedly for 10 years+ with this disease). Thank you for reading.

SusanB-dil · April 2

Hi Lgasparini - welcome to 'here', but sorry for the reason. Caregiver burnout is real! Try again with local care companies, but check their website that they handle dementia care, and ask them direct. You can also check adult daycare at least a few days a week.

Yes, you already know you are doing too much. Sorry you are dealing with 'this'.

--Rebecca-- · April 2

We don't live in your area. Our advice wont be helpful. Start attending multiple caregiver support groups in your community and ask for advice. Even if you have to take half of a day off work, consider this research. Be open to people not working in an agency. Since you work from home, it will be easier for you to screen and supervise new caregivers.

Sidenote: Is your family helping with housekeeping and meals? I know this life phase is hard on your entire family.

hiya · April 2

we are not quite there yet…however, following this site, yr mum could have a hospice evaluation. My understanding is someone will come a couple of times a week to bath yr mum. I know you are looking for caregiving help but this may be beneficial.

Laura21834 · April 2

Lgasparini—my heart hurts for you. I like the idea of skilled nursing or other adult day care workers that can help in house. Suggestions like this have been made to me and my first thought was, "When do I have time to make the calls, interview, etc.?" Been there. Maybe just 2 days a week so the price is not overwhelming—? With your work being from home, overseeing the caretaker would be a little easier. (still, it is a shame that you have to oversee this). Let's hope you get a good one out of the gate.

Is it unreasonable that your teenagers can step up with home chores? (not personal care) I know kids are busy these days, but again, a day or two of help from them would be such a break for you.

Please know that you are amongst friends and you can vent anytime!

H1235 · April 2

You might want to contact your local commission on aging. There may be services that could help. I have no idea how you get quality caregiver help. I think the suggestion to consider hospice is a good one. The worst they can do is say she doesn’t qualify. I can see why Al wasn’t working. At stage 6 she probably needs mc. Unfortunately that is so expensive it’s just not an option for may. The other option is a certified nursing facility, but no one wants to do that. If you think there is any chance it may come to that, it may be worth looking at what is available. Some have a waiting list. I hope you can find a solution.

harshedbuzz · April 3

@Lgasparini

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

It sounds as though this situation is not sustainable. You are one person. There are 24 hours in a day. And you have other important roles to fill as wife, mother and employee/coworker. A PWD in stage 6 is a full-time akin to being a SAHP of a toddler.

In some communities there are day programs that provide care for the elderly and disabled adult children so families can remain at work. The one near me offers things like showers, salon (hair/nail) services as optional add-ons. Other communities have shorter programs with transportation to cover 6-7 hours daily.

Agencies don't generally have tremendous depth in the pool of aides. When you're new, IME, they do send the newbies and less popular aides. If you're hiring 40 hours or mom, you can be more demanding of them in terms of sending someone capable. Many folks hire via care.com or word-of-mouth but this requires you to do the vetting, training, payroll and insurance on your own plus, you lose back-up if there's a no show or call-out. A live-in might make sense as well if you have the room.

TBH, I'd reconsider placement. At a certain point the cost/hour is cheaper than in-home aides. If your mom doesn't have assets for this, you could qualify her for Medicaid.

If the place she was in was a hospitality model AL and not a MCF, it probably wasn't the appropriate level of care. People in a AL are given more autonomy in terms of asking for help or refusing it. This is a recipe for disaster PWD who don't see themselves as impaired and believe they're still showering each morning.

HB

Deepot · April 4

Try to reach out to her insurance company and see if they will cover services for a home health aide

VKB · April 4

Have you asked family, friends, neighbors or church members if they want a job? Also, pray. God does answer prayers.

LGCRZ · April 5

Thanks for all your comments. My husband and kids help, but there is only so much I will put on them. For instance I just read another post about incontinence (which we are dealing with). I couldn't possibly ask them to help, and this is where I would think the in-home care should step in - but they dont because they are not trained.

Re-placement isnt really an option because I have scoured the area and all the facilities are basically the same level of care - which is not great. We also bought a house for this very reason, so that seems like I would be a) back tracking and b) the moves are hard on my mother. Any shift in environment is very stressful on her/us.

Anyway, thank you all for weighing in. I will keep trying to solve the puzzle of how to get trained help in here versus these home help aides. Like so many care givers have noted on these discussion boards, its a bit of a nightmare that we are all managing and you just have to be resilient I suppose.

Anonymousjpl123 · April 5

@LGCRZ one last comment (aside from being glad you found this forum) is I second the idea of reaching out to your department on aging and/or ombudsman. They were enormously helpful to me when I was struggling with my mom’s placement. I know you are keeping her at home, but they may have ideas for low cost services that are reputable. Hang in there. I’m glad you found this forum.