Paid Caregiver Here

stephenpitkin

Hi, 

I have decades of experience as a live-in caregiver, but not for an Alzheimer's or any type of dementia patient.  My paralyzed friend and client recently died.  Needing work and security, I find myself having accepted a position that feels very uncertain, very scary, in some ways, with someone who seems quite wonderful and accomplished otherwise.  He is midway through Alzheimer's progression, his wife told me.

I may be writing this mainly for myself at this point, since I don't know what questions to ask.  Every piece of advice you could give would seem dependent on information I'm not sure I know.

But it's a step toward processing the situation.  Here are some of my questions and/or concerns.

1. I want to make sure that I am the right person for the job and that I am earning the pay.  This is a delicate situation and these are people I very much like.  It's tough setting a price as I don't want to take advantage of a couple in dire need and yet have to pay for my own expenses which, with the death of my friend, are thrown into question.

2. I'm not sure what hours I'm going to be working.  It seems he's gotten into a pattern of waking at 5 p.m. and staying up into the night until 2 a.m, maybe later.  I could handle that well into the early morning for maybe 3 nights a week (as I may have an overnight job the other 4 nights a week with an MS patient) and work 5 to 9 on other nights of the week.  This part is quite confusing.  I don't know if he'd want me spending time with him during those hours, whether he'd reject my companionship, and what to do to be useful if that should happen.  Maybe it's customary for paid caregivers for Alzheimer's patients to sit around idly, their usefulness being in their on-hand availability.  I don't want to intrude if he'd like to be doing something harmless, alone, and I don't want to collect money for doing nothing.

As I've been working on lots of relaxation and self-improvement techniques over the years, I can see my role in part in bringing joy and helping his wife let go of the unnecessary stress, building up self-nourishment, building positive thoughts and emotions - helping her take care of herself all the while making sure her DH is safe in a variety of ways.  I think the key here is to keep finding and growing joy in the act of doing the best we can for him.

Debilitating illnesses don't respect boundaries.  I learned that in how my whole life revolved around my now-deceased friend who had a long-term, slowly progressing ALS.  At the outset of a new phase of my life, I'd like to learn to set healthy and happy boundaries if I can, advocating for my own needs just as I'd advocate for those of this wonderful Alzheimer's patient.

Well, I'll find out more as I continue.  I'm meeting them for a second time tonight, this time focusing on him. I'm naturally rather shy, so I'll need to overcome this and see if he and I can begin to have a good time in each other's company.

Thanks for reading.  It was comforting planting these thoughts into a place where others may have had some similar experiences and offer support.  I am honored to be placed in such an intimate place in the lives of these two good people, and I don't take this lightly.

Steve

[Deleted User]

The user and all related content has been deleted.

MN Chickadee

Having a kind heart, lots of patience, and a willingness to learn about the disease will be enough I think. I would read "Understanding the Dementia Experience" found online and also look at any Teepa Snow videos you can, this will give you a sense of what the challenges are and what kind of approach and communication you would have to learn. Unlike ALS or some of the other diseases you may be familiar with, you usually can't use normal communication with dementia. You have to find fibs and workarounds. Honestly taking care of my mother was pretty similar to caring for my kids who were toddlers at the same time. Her judgement and interests were similar, her ability to find danger and mischief and her need for help with personal care etc. Incontinence and assistance with hygiene will definitely be a factor in mid to late stage Alz. 

The night thing you will have to work out with them. Just because he sleeps at a certain time now doesn't mean he will long term. And perhaps the caregiver spouse will have needs that change. Are they mostly looking for help at night so the spouse can sleep?