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TraceyBinDC Asked April 2015

Is it best to care for my Mom at home? Overwhelmed....

My mother is 86, recovering from partial hip replacement surgery, and about to leave her nursing/rehab facility across the country. Her income is extremely limited. I've gotten her on the list for a great assisted living here, as a permanent solution, but I'm having trouble finding interim beds that we can afford. I'm terrified by the thought, but should I care for her in my home for now, with perhaps daily visits from an in-home aide?

igloo572 Apr 2015
Geez - so many different issues on this,
Where was mom living before the fall? and why can she not return to that place and have home health come in till she gets back to her prior ability? and how does she feel about all this? If mom is sharp as a tack, then what does she really really want to do? Where is her voice in all this?

if it is that she just has to leave AZ and move to DC, my suggestions are:
1. I would do whatever (beg, plead, boxes of donuts) to get mom on additional days for rehab. I'd talk with the PT, OT or whomever in rehab and her doc and the medical director of the facility to have her rehab extended - I'm somewhat surprised that if she still has days & days before her 100 Medicare days is used up that they are discharging her. Get it extended.

2. Reality check - I think you are going to find all of this is going to be quite a lot harder than you thought. A good reality check would be for you to go to her rehab facility (assuming you get the extension) and stay there with mom 18 hrs a day from a Friday - Sunday. Weekends are good as there is less staff so you have better opportunity to do what is needed. It will put to the test just what mom's ability is Ask the facility about adding a meal so that you do all your meals there. You get there an hr before mom's day starts and are there till when she goes to sleep and you do all the assistance that is needed for her. SHe needs to get up and get dressed, you do whatever is needed to make that happen only if she cannot do for herself; ditto on potty - you help only if needed and are her shadow on getting out of bed and to the bathroom; you shadow her to all meals and assist only if she just cannot do what is necessary. Then when you get back to your hotel room, make yourself notes.

When the weekend is over and you return home, go to the chosen AL and spend the afternoon there and note IF mom is like the residents of this AL are like. If this is a busy, active resident AL and mom could not keep up, probably not the place for her.

3. The AL that will accept her….have they sent anyone to see her (like from an associated facility in AZ) or have they gotten an ADL report on mom or spoken with the care manager? I'd be somewhat concerned that the AL will find that mom is just not suitable 3 months after move in. AL are real profit centers and I've found that they do over promise accommodations and then once the resident is in either find the need to add on 1-on-1 aides or find the resident needs skilled nursing care (a NH)

4. How is the AL to be paid? If private pay, ask clearly about what level of accommodation are routinely provided for the set rate. If she needs a dedicated aide to help with her ADL's find out just what that is going to cost. If Mom is going to apply for Medicaid waiver for AL, please speak clearly with admissions as to the criteria for the waiver - some may require 2 years private pay; others may only have 4 AL beds that are waiver beds so mom may be looking at a long wait to get one of the 4. Also waiver funding is not dedicated funding (like NH Medicaid is), many states are not doing waivers and instead using the diversionary funding for PACE programs; or the AL can stop their participation in waiver program.

Also if mom's $ is limited, how are the aids to be paid while she is living at your home? For my mom when she was at home recovering from rotor cuff surgery (so she was able to walk & use the other arm), the home health was a minimum of 4 days @ 4 hr day per week @ $ 20 hr. Days to MD appt or to rehab were 7 hr days, so about $ 1800 mo. If all mom's funds go to pay for home health, does that work for your budget?

5. If mom's Medicaid ineligibility is that her monthly income is above the state's limit but she qualifies in every way but that, mom can do a Miller Trust. Miller is totally legit and done all the time. It will need to be done by an elder attorney in your state as they have to be in compliance for however your state deals with trusts. How it works is like this: mom gets 1500 in SS, 1K in dad's retirement and 500 in her retirement = 3K every month guaranteed. State max income for Medicaid is 2K. So the Miller gets the additional 1K and voila! mom is now @ 2K. Some states have Miller so that it builds each month by the overage and reverts to the state upon death; other states have it so that each month the whole amount goes to the facility as their co-pay except for their small personal needs allowance. The income has to be guaranteed type of income to go into a Miller but if so can make mom medicaid eligible.

6. I vote with those that suggested that you have a 3rd person travel with you.

7. As far as the boys, well you may find that although they love grandma, that having their home become a home for the aged & infirm will cause many problems. They will probably find ways to be anywhere but your home.

Linda22 Apr 2015
My mom was also unable to walk much when she moved to AL, so her care level included wheelchair transpo to meals, activities, whatever she needed/wanted to do. She loved chatting with the aides. She had enough mobility to get around her little studio apartment. And she could pivot and transfer, which they required.

I think that there are valuable lessons for your sons. Just a word from having been there - take extra care that as time goes on, you keep focus on them. It's so easy with an elderly parent to have their needs and wants scoot up the priority list and the kids feel it.

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pamstegma Apr 2015
First and foremost ask the MD if it is safe for her to fly. Everything hinges on that. Avoid a md-air emergency PLEASE.

Windyridge Apr 2015
Flying is not good. And I think you'll regret very quickly taking her into your home. I hope a spot in a facility comes up fast. It sounds like she needs skilled nursing care. AL might not meet her needs.

glasshalffull Apr 2015
Has she used up her Medicare days (20 days after a 3 day hospital stay at 100%; days 21 to 89 at 80%)? You can ALWAYS appeal the discharge if she is not able to take care of herself (Where is she in doing dressing, bathing and personal care - ADL's ) perhaps she is just being rushed.

If you decide to fly - Will she be able to sit with no room for her legs for 5 hours? Is there someone who can fly with you and your mom? A friend, relative etc? That way there is someone for each side for transfers. Arrange for wheelchairs in advance and priority boarding. May need to ask her Doc for anxiety meds for the trip... (consider for yourself ---perhaps) Check everything you can (so hands are free) My mom drinks (rum and coke -Even for morning flight) as soon as she can on flight and we use the nice depends with a heavy pad inserted in that can be changed if needed. You need to be in row nearest to bathroom - just in case. Dress is easier than slacks. Take some chucks (disposable pads) may make your mom feel protected...

Take this time to get bathroom and bedroom prepared...mount grab bars, remove throw rugs, count steps between bed and toilet etc. Have mom practice the 14 steps sit on toilet. get up 15 steps to chair, with therapy people before she leaves. (so that she has better stamina for your place or her assisted living.) Remove barriers BEFORE she gets there. Much easy than when she is there and can't fit through doorway with walker...

Best wishes...I hope the AL comes through soon! Let us know how you and mom make out.

notrydoyoda Apr 2015
Unfortunately, medicare only pays as long as the person is making progress according to their standards. My mother ran into that in the nursing home when PT tried to help her walk once again after hip surgery. She did not make the needed progress with them and thus they stopped their efforts because medicare would no longer pay for her PT.

Good luck and keep in touch.

freqflyer Apr 2015
Tracey, just curious when was the last time your Mom had flown? Is she comfortable flying? Has your Mom flown going through airport security? Just wonder is she knows what to expect. I know I couldn't fly with my Mom as she wouldn't allow anyone to go through her purse or vanity carry-on :P

A flight from Arizona to BWI or Reagan would probably be 5 hours, hopefully non-stop, thus numerous trips to the restroom without a walker. Is that something your Mom would be able to manage?

One idea is to box up your Mom's clothes that she will need and have them UPS or USPS to your home, far cheaper than flying them on the airlines.

notrydoyoda Apr 2015
I share freqflyer's concerns.

I may be wrong, but " "stand-by assist"....she is up to taking about 20 shaky steps with a walker, with someone following." does not sounds like a candidate for assisted living to me for it can be a long walk to the dinning room.

Again, what has the doctor said if anything about her future care?

I'm also not sure how useful a 10 and 14 year old son can realistically be expected or even should be expected to do for an 86 year old grandmother with mobility problems.

How do your sons and your husband feel about this?

Have you already transformed your den in preparation for next Monday?

Many caregivers bring a loved one into their home or move into their home for what they think will be a temporary move that then becomes a life time. Such a move completely changes family dynamics in one's marriage and in one's relationships with children who as in your case still live at home and are still at ages that require much parental involvement.

I wish you well in getting all of this set up and dealt with. Keep in touch and let us know how things work out.

freqflyer Apr 2015
vstefans brought up a very important piece of information... make sure your Mother has a valid up-to-date photo ID that is government issued, otherwise Mom won't be flying that day.

As for motion sickness, I am the poster child for that, the best thing I found is Dramamine, but make sure her doctor approves of her taking it because of interactions with other meds, it will make her sleepy.

When is your flight time, if it is during a very busy time at the airport don't be surprised if the airline cannot supply a wheelchair as requested due to the fact they are all already in use. Be sure to reserve a chair far in advance to better your chances of getting a chair.

Oh, the airlines will not allow your Mom to have her walker in the cabin, mainly because it is too wide for the aisles and a trip hazard for other passengers. Don't be surprised if the flight attendant takes the walker to be placed in cargo, as it is probably too large even folded up to go into the baggage bins.

While sitting on the plane during the flight, make a little game around moving one's legs, stretching, wiggling the toes, making circle motions with your foot, this will help limit the risk of a blood clot which could happen to anymore, more so as we age. Hopefully you won't have a seat mate that need to run to the bathroom a dozen times, with the airplanes being so very cramped with less leg space, you and your Mom might need to stand up to let the seat mate come and go.

Please let us know how all this turns out on your flight. Here's hoping it will be a smooth one :)

TraceyBinDC Apr 2015
I wasn't terrified at the thought; I was overwhelmed. I'm not any more. And, yes, I think it's a similar reaction to any parents' first reaction to the idea of being responsible for a newborn.....most of us, as parents, felt that way at some point. Vstefans, I agree. My gut reaction wasn't "don't do it", my gut reaction was "think about this idea, despite the fact that it sounds like a lot and you don't yet understand how to do it....." One thing about me has been proven true, and that is that I don't shy away from challenges that I don't understand. I figure them out. I home-schooled my son for two years when he was having trouble getting his needs met in public school, I sold my fixer-upper house by myself, I took my two kids to Turkey by myself...I've always been good at doing things that seem outside my wheelhouse.

Again, my mother isn't staying in my house permanently; that's not an option. I so appreciate all the suggestions and details for ways to prep her for the trip, take her trip, etc. Her driver's license....I would never have thought to ask.

Update is that my mother was deemed to be making sufficient progress to stay at her nursing facility through the 28th, at least. So now I have a bit more time. I bought a toilet chair, an adjustable bed, disposable pads, set up home care, including an initial LPN housecall from a geriatric service, I'm changing her banks, I've talked to the special needs agents at the airline three times, I've told my caregiver support group all about the plans, talked to my sons....I think it's going all right.

Thank you all. I'm going to move further questions from the "Tough Issues" thread, I think. I will be following much of your advice in the meantime.

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