Caring for Elderly Parent

[Martha]

I am 57 and caring for my 61 year old sister. She is developmentally disabled, and is very stubborn at times. I work 40 hours a week, but need to take off to take her to dr and dentist since she doesn't drive.

She has been living with us for 2 years, and eventually i will find an assisted living facility. She is on social security disability and has a small ira, so money is an issue.

My brother is 1000 miles away and he can only have her for a month a year, but it is better than nothing.

She loves to talk to people all the time, and I haven't been able to take her out a lot. She has a senior group at church, a library book club, and that's about it. It's almost like having a child again.
My husband has been very patient and we do have a big house, but she tries my patience sometimes.
I know many of you are in worse situations, so I am mostly upbeat about the whole thing, knowing it is temporary.

God bless all of you for doing the best you can!

We had my autistic brother living with us for about a year some years ago. We couldn't handle it and he moved into a semi-supervised facility. It was good for him and good for us that he moved. You might at least think about having your sister move while she is young enough to be active and make friends. She might really enjoy the living situation.

Just a thought.

 

[Goonie]

Nursing Homes are dreadful. Talk about a place where people do not do their jobs. This is the result of poor management and low paid workers with high turnover. This is one area that needs reform and some new punitive laws for neglect.

Nothing like going to a Nursing Home and paying about $80k/yr to be neglected.

Actually, we have quite a few nursing homes nearby, and most all of them give excellent care. None have been cited for any neglect whatsoever. There is only one that is at all questionable, and even it isn't that bad. All but one are privately run operations. The one exception is run by our county, and offers the best care of any. One of our elected county board members just recently became a resident there.....he pushing 90, and his health has been declining fairly rapidly. He could have chosen one of the private nursing homes, but he decided to put his money where his mouth is.

Perhaps our area is the exception to the rule, but I wouldn't think so.

But all that said.....my Mom will stay at our homestead for as long as possible, especially since her LTC policy cover home care, as well as nursing home and assisted living residences.

 

[simple girl]

Decision time on FIL is fast approaching, I think. After repeated attempts yesterday to reach him by phone resulted in a busy signal and a neighbor reporting no answer at the door we went over to check on him. Found him lying on the kitchen floor conscious but semi-coherent. Droopy eyelid on one side and weak hand grip on the same side, so I'm thinking stroke. Call for an ambulance and he has equal hand grip by the time they're out the driveway. Okay, that does not happen with a stroke. The droopy eyelid was a preexisting condition exaggerated by the low oxygen.

Turns out he has the flu and bad lung congestion resulting in low oxygen levels. He was admitted last night and will stay tonight as well. He is still "not all there" mentally so I don't know where this is going to end up. But I think his living alone days are numbered. Nobody in his family wants to even talk about it. Sigh.

So sorry to hear about your FIL. FYI, there is a possibility that weak hand grasp could have been due to a mini-stroke. I've seen people be weak like that and recover to the point where you never knew anything had happenned.

If he's weak, not walking as well, etc. he could be sent for inpt rehab or subacute rehab. That could give the family more time to see how he is really doing and put you in touch with a team of professionals to help you sort through the upcoming decisions.

 

[Achiever51]

My 89 year old father has been -- until Sunday night -- very independent, living alone for the past 14+ years since Mom died, driving, shopping, caring for his house, etc.

On Sunday afternoon he called me to say that he was having trouble catching his breath and wanted to go to the E.R. My brother took him in, thinking that this was going to be a series of tests over the next few hours -- as we've experienced several times over the past few years.

Except this time. He's in the community hospital right now waiting to be transferred to a local teaching hospital with a first rate cardiac unit. Tests are telling us that he apparently outlived his by-pass done some 24 years ago. Now he either has another blockage or a collapsed artery -- which will be addressed tomorrow thru angioplasty. Can't just go with meds on this one.

This will be his 7th catherization over the years and this one's got us worried, mostly because of his age, but also because of the "what if" factor.

But all I want now is for my dad is a successful procedure tomorrow.

If you good people believe in prayer, I'd appreciate it if you'd say a quick one for my dad. Thanks.

UPDATE: SUCCESS!!

The catherization/angioplasty was done today and happily, it went exactly as we hoped. There was a blockage in the left anterior descending artery (often called the "widowmaker" as it is the site of many fatal cardiac incidents), and the cardiologist was able to do a baloon angioplasty with an inserted stent -- he was in and out of the cath lab within 45 minutes. Amazing. I asked the Doc if Dad was his oldest patient today; nope...the next person on the table was 93!

Dad's recovering in the hospital for a few days...flirting with the nurses already (a good sign) and should be coming home soon.

Brother and I are talking about next steps -- still think time is at hand to address if Dad can continue to live alone...but for an 89 year old guy, he really is in pretty good shape.

 

[grumpy]

Can you give us the ballpark of these fees?

Al,

When my parents went into the CCC in 1998 the entry fee for their two bedroom apartment was $190,000. They paid $4400 per month. My inlaws moved to a three bedroom apartment in a less upscale CCC in 2000 and paid $170,000 entry fee and $2800 per month. My parent's monthly fee covered all meals, medical care, prescription drugs, assisted living services and nursing home care as needed. The communities provided transportation to doctors appointments.

Grumpy

 

[Khan]

When I read these experiences, I want to make an appointment to die on my 75th birthday.

 

[Achiever51]

One of the better senior communities around here is associated with one of the large community hospitals. It has several levels of services starting with "independent living", then moving to "assisted living" and finally full nursing care, provided the following as the fee schedule for the independent living apartments (for seniors who can still get around but want meal service, laundry and availability to near by medical care...)

Apartment Style Monthly Fee Refundable Entrance Fee
One Bedroom Basic $1,450 $66,000
One Bedroom Traditional $1,673 $66,000
One Bedroom Deluxe $2,007 $84,400
One Bedroom with Den $2,415 $99,900
Two Bedroom Traditional $2,669 $122,000
Two Bedroom Deluxe w/Den $3,161 $133,500
Second Person Fee $536 $16,500

 

[loosechickens]

We moved my mother from her home to an independent living apartment in a retirement center in 2000, and she lived there quite happily and in apparent good health right up to the moment when she walked into her bathroom at age 91 one morning and had a massive stroke or coronary and fell onto the bathroom vanity and was gone. Short of dying quietly in bed, was about as easy on her as it could be. From the look on her face, she went quite peacefully, and the medical examiner said she probably didn't even know what hit her.

We're now in southern CA where my MIL just fell in her independent living apartment at a retirement center and broke her femur. She was in the hospital for a few days, and then removed to a rehab/convalescent facility. She's been there for several weeks, and it's too soon to know whether she will recover enough to go home, or whether we are looking at a situation requiring more care.

It's good to read all your stories and realize we're not alone in this period of our lives where it seems like years have been spent dealing with elderly parents.

LooseChickens

 

[Walt34]

UPDATE: SUCCESS!!

Dad's recovering in the hospital for a few days...flirting with the nurses already (a good sign) and should be coming home soon.

That's great to hear - that things can work out better for him.

 

[Walt34]

If he's weak, not walking as well, etc. he could be sent for inpt rehab or subacute rehab. That could give the family more time to see how he is really doing and put you in touch with a team of professionals to help you sort through the upcoming decisions.

The odd thing is that one SIL is a nurse (cardiac care) but she seems to be the one least willing to deal with alternatives & follow up. This I do not understand. She is a very optimistic personality and does not like to think about unpleasant things. "Denial" is a bit of a stretch to describe it, but she's putting it off as long as she can.

But I will ask her about your suggestion. Thanks.

 

[Walt34]

If he's weak, not walking as well, etc. he could be sent for inpt rehab or subacute rehab. That could give the family more time to see how he is really doing and put you in touch with a team of professionals to help you sort through the upcoming decisions.

He's in a rehabilitation center/nursing home now, been there for three days. I am NOT impressed. He has a sore neck from sleeping in a bad position in the hospital and they haven't done a thing about it. SIL the nurse is going there today and will look into getting him home, although the reason he's there is that he's a "falling risk". Other than that, the place is clean enough, the food looks edible though nothing great, no bad smells or vibes.

The restrictions on personal movements are absurd for someone who has no mental deficiencies.

I flat-out told him that if he doesn't want to be there I'll take him home. There is no court order holding him there. If it was me, I'd want to take my chances on falling on my butt and have my freedom rather than stay in a nursing home.

Those places scare the hell out of me. There are things worse than dying. Not dying is one of them.

 

[simple girl]

He's in a rehabilitation center/nursing home now, been there for three days. I am NOT impressed. He has a sore neck from sleeping in a bad position in the hospital and they haven't done a thing about it. SIL the nurse is going there today and will look into getting him home, although the reason he's there is that he's a "falling risk". Other than that, the place is clean enough, the food looks edible though nothing great, no bad smells or vibes.

The restrictions on personal movements are absurd for someone who has no mental deficiencies.

I flat-out told him that if he doesn't want to be there I'll take him home. There is no court order holding him there. If it was me, I'd want to take my chances on falling on my butt and have my freedom rather than stay in a nursing home.

Those places scare the hell out of me. There are things worse than dying. Not dying is one of them.

I'm so, so sorry he's having a bad experience. I know all nursing homes are not created equal...

From what I've seen restraints are used only if absolutely necessary and only if the family agrees to it. At least that's the policy in my state. Some families make the choice to allow the resident to walk and move about without restraints, accepting the potential consequences of a fall.

 

[lazygood4nothinbum]

during the four years mom lived at a nursing home, i never saw a patient restrained. when we worried about mom falling, i asked about that and they informed me that they do not restrain patients; rather, they work with patients. (they did not even like to medicate patients to control behavior.) this place was physically well designed, even with handrails throughout disguised as hefty chair rails. staffing was adequate to patient population. mom fell just a few times though fortunately never broke anything.

when she finally forgot how to walk by herself, we provided her with a wheelchair. she was wheelchair-bound for about six months but never tied to the chair. each day she was wheeled into the living area to socialize and watch tv, wheeled to her table for meals, outside for air. when we'd take mom out for lunch, we'd go in two cars, me taking mom in the convertible and bro & sil taking the van to bring her wheelchair with us. but eventually even that became too scary for mom to handle so we had to stop. still, she enjoyed lunches out until just months before she died. way to go mom!

at the same time i was going through that, an old friend was dealing with her mom's alzheimer's (i had two good friends going through the same thing at the same time as me). my old friend or her mom didn't have much money at all, never did, and so her mom was placed in a publicly funded facility. while it was a clean place, they didn't have the staffing or training of the facility that my mom was able to enjoy. her mom was not strapped tightly in place but was tethered to her wheelchair, such that whenever she tried to get out of the chair the tether would pull her back into her seat. it was very hard for my friend to see that but she had taken care of her mom at home until she absolutely couldn't do it anymore so there was not much else she could do.

when my grandfather had alzheimer's some 25 years earlier, after an operation that my evil step-grandmother insisted upon, she placed him in this horrible hospice where he was strapped to his bed. i was just in my early 20s and didn't have legal rights over him or even know what to do. i was just a kid and though it might have been normal precedure in its day, in retrospect, i should have cut him out of that bed and brought him home. my memory of all that is nothing short of sheer horror and i still curse that bitch whenever i think of her. he afforded her a very nice life and deserved so much better. but between her and the times, he didn't have a chance.

 

[Walt34]

From what I've seen restraints are used only if absolutely necessary and only if the family agrees to it. At least that's the policy in my state. Some families make the choice to allow the resident to walk and move about without restraints, accepting the potential consequences of a fall.

There are no physical restraints, but they're telling him they don't want him walking around. I'm sure it's to shield the home from liability in the event he falls. Given the nature of our legal system I can't say that I blame them. One would think he'd be able to sign a waiver though. Mentally he's "all there" so that isn't an issue.

I didn't go today, there were three or four planning to go and that starts to be a crowd and a bit overwhelming for someone who's been living alone for almost 10 years.

 

[katwoman]

"Stay at home daughter" is my status going on 5.5 yrs.

The only "good" thing is that my brother had the foresight to purchase a LTC policy long before these became popular. Mom's policy has a maximum $4500 monthly benefit for a caregiver in the home so in addtion to me we have a 24 hour caregiver who is wonderful. BTW, this is a LIFETIME benefit and from the looks of things mom is going to last a good long while given the level of care she gets.

 

[chinaco]

"Stay at home daughter" is my status going on 5.5 yrs.

The only "good" thing is that my brother had the foresight to purchase a LTC policy long before these became popular. Mom's policy has a maximum $4500 monthly benefit for a caregiver in the home so in addtion to me we have a 24 hour caregiver who is wonderful. BTW, this is a LIFETIME benefit and from the looks of things mom is going to last a good long while given the level of care she gets.

Wise move on your brother's part. Lifetime benefit is probably rare today. The cost of an LTC policy on an individual basis are fairly high.