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anonymous295093 Asked May 2015

I am just stepping into the caregiver role for my parents, and I have so many questions and I don't know who to ask or where to begin. Advice?

I am looking for answers/resources/suggestions/hints/etc. In several areas including: how to make home handicap accessible, basic home care training or classes, caregiver support groups, assistance in figuring out what Medicare or kaiser do/do not cover, how to manage feeling overwhelmed/stressed/frustrated, juggling the roles of caregiver and adult child of caregivee, free and low cost resources. Any information and/or tips are appreciated. Thank you so much

commutergirl Nov 2017
Handicap accessibility. In my case, bathroom use. I reorganized my mother's bedroom. Got a hospital bed but took arms off. Medicaid paid. I bought a mattress from Walmart for $75 which is way better than the one given with bed. I reorganized her dresser to only sheets and boxed up all other clothing. Socks, bras just take one drawer. Chest is for more tops, gowns, etc.

Incontinent is my issue. Falling is every senior issue. I have a portable comode next to her bed with the one arm down. It is close to her bedroom door. She can close it for privacy. Hanging is all her incontinent supplies, baby wipes, etc.

No throw rugs. Socks with anti-slip are good. Her bedroom is in the back. I put the
55-inch tv in her room with a recliner. She has a guest chair and it makes us gravitate more to her bedroom so she is not alone. Low hearing, I got her a telephone (free in Indiana) that has teletype of the conversation). Extra large shower chair that is half in and out. Those stools are a joke. The lower they have to bend, the harder to get them up. I bought a transfer wheelchair because the standard is too large for small corridors. Your state holds the answer for many of your resource questions. Good luck.

debdaughter Jan 2016
Sharon, do we have a misunderstanding? this isn't a place to get help; I just wondered if you were doing this voluntarily

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ShayLH Jan 2016
Deb, ask on here and I am sure you will get all the help you need :-) I will help wherever I can. Sharon

debdaughter Jan 2016
Shay, that is so nice; I so wish hub's aunt could have somebody like you - are you just doing this voluntarily?

ShayLH Jan 2016
Just a thought, I help with a lady that has Dementia, one of the things I do is sit with her and have her spell words and once she has spelled it, I have her spell it backwards. I can see the difference as when I first started I could not use big words and now she can spell anything backwards. Even her husband has noticed the difference. She also has word search books that she enjoys. It helps to keep the brain active.

debdaughter May 2015
2nd sandwich - for all we did housewise, don't know what we would have done had done stayed with us much longer - dad's grandson that he'd had move in with him had just about reached his limit - we had just started checking into respite but that wasn't going to be enough and that's where we hub's aunt and uncle are now, too; Medicare definitely does not cover that; would love to know if Kaiser - or any health insurance - does - have somewhat gotten the idea there are some that do but before had always thought you had to have separate LTC policy

sandwich42plus May 2015
To help you out, we really do need to know what kind of things your parents are diagnosed with that mean they need full time in-home care.

We need to know more specifics about you too - how old are you, are you near them, in their house, in your house, what?

Like someone said above, get the legal docs take care of first. First first!

When I took my mom in, we went and bought a transfer wheelchair, a swivel seat for the car, a fancy handle to use in the car to help her get in & out. We ended up not using any of that for very long. If I had known, I would have waited on the PT assessment to prescribe that stuff and have insurance pay for it!

The changes to the house will be dictated by what kind of issues are going to come at you because of your parents' diagnoses. It is possible to spend a small kingdom's fortune on devices, doodads, tools, and the latest aging gadget, but if it's the wrong thing at the wrong time it's money wasted.

You're going to need coverage for the night hours - at some point - and some of the day hours. Nobody - not even Florence Nightingale - can do it around the clock every single day.

More details and we can help you much, much more effectively.

debdaughter May 2015
I'm going to try to be a little specific with your specific questions; at least the first one regarding making the home handicap accessible - one of the first things we'd done early on was to swap out the toilet for high-rise one, although in all honestly, what happened, because of our situation we did the wrong one, not their actual one, although in some ways it turned out to be good because it turned out the doorway to theirs was too narrow for a walker - something you might want to check; don't know your situation but if you're really wanting to get things done the way they should be and you can and you have that situation you might to consider trying to widen that doorway, so actually by the time we got to that point we didn't actually swap out that toilet but we did get one of the seats to go on top that also had the grab bar handles on it. We also put bars on the wall down their long hallway going from their living room/kitchen to their bedroom/baths area as well as a grab bar on the wall of their bathroom from the doorway to the bath. Again, if you have the resources a walk-in tub/shower would be great; again, we weren't able to do that but we did get a transfer bench - at least we did for mom, but it was borrowed and when we returned and went to get it again for dad, the rules had changed and we weren't able to; thankfully he was able to deal with just a shower bench. We also definitely got a handheld shower as well as, for mom, who still really liked her bath, a lever rather than a knob to run the water. We also did have a commode chair for her bedroom for the times she just couldn't make it even to her bath in their room. They both had walkers. Deal with rugs. Oh, also, definitely a lift chair - we've been able to find them used at reasonable prices if you can't get a new one. Not sure, like others have said, what particular issues you're dealing with but we dealt with vision, so definitely lots of good light - my dad was bad about wanting to save energy so he'd take the bulbs out; we'd put them back in for mom; however, having said that, with his vision, he wasn't as bothered by it but that was as much the reason for the bars as anything; he would more feel his way while she wanted to see as much as she could. They both were still ambulatory all the way through so no scooters or wheelchairs but just thinking depending, again, on your situation and resources and their capabilities kitchen wise have a friend who's totally doing his kitchen handicap accessible - doing away with bottoms under sink/stove, etc. so can roll up under, etc. but he is younger, so might not be appropriate for your situation so all I can think of right now but hope that helps some; if you do all that, will keep you busy for a while! :)

Miasmom1 May 2015
this website was such a help to me. when I first joined I just spent some time reading different posts - you will learn so much and probably not only get answers to your questions but will be able to see discussions on those questions. my lil nugget of advice: PLEASE don't forget to take care of yourself. Keep reading, keep posting. good luck.

Windyridge May 2015
Any questions you have can be addressed by info on this site. It's very easy to navigate. You will also find dozens of people on this site who are going through the same process and will gladly share their experiences and advice with you. Break it down and be more specific. Stay in touch.

geewiz May 2015
Great steps from Kathy. I'll add some of my thoughts. For this site it is helpful to know a bit more about your situation. "general age related decline doesn't say much. Go into your profile or add to your questions, more info. For example: mobility issues is better than age related decline. Has been diagnosed with MS would tell even more. Age is important as well as all of the caregivers here can offer more thoughtful ideas with that info. Are there memory issues? Do you live with or near your folks? Are there other sibs?

If there are other sibs, I'd encourage getting their involvement early on. I think some of the sibling issues that arise come from those of us who just do what is needed' from day one and then are ready to crash months or years later. By that time, we have been viewed as the problem solvers and sibs don't know why we seek their help later.

Try local hospital and United Way websites for care giver support groups. They are also offered at many houses of worship and assisted living facilities. If there is a specific diagnosis for your folks, organizations dealing with that diagnosis may have information on their national website.

Start a notebook and keep track of info you acquire. You may not need it now but will later! Slow and steady gets more done than panic (even though you may feel quite panicky at times). We are here for you.

kathyt1 May 2015
First, relax, it's a marathon not a sprint. Second, respect your parents right to make their own decisions; your role is to facilitate their lives, not decide their lives. This will stop a lot of heartache, and inspire their trust in you. Third, get the papers in order, see an elder attorney, it's money well spent. Fourth, what route are you going, cure or care. I highly recommend cure, read "My Mother Your Mother, by Dr. McCullough. It's an eye opener. Five, find balance, your a team, their needs are not more important than yours. Build a support team; you will need respite.

This is a great support group. Go up to top bar, elder care, find handicap products. Try your county council on aging, they can tell what services are available, free or low cost. Google your county and state, they all have aging help. Read everything you can about your parents conditions. The more knowledge you have the better. You tube taught me how to get parent up after fall, how to transfer from bed to wheelchair, about dying, etc. make sure they are professionals, or or nurses.

When you are frustrated or need to rant, come here. We hear you, and understand. The advice and emotional support you will get here is superb, none better. Lastly, always remember why you do it, love, let it shine through. Love and humor will get you through some horrible dark days. Got to run, Dad's up

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