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Old 10-08-2010, 05:13 PM   #1
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Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

Hoping you all could offer your opinions. I posted before about my mother. She was living in a retirement community (in CA), but basically couldn't adjust once we moved her into the assisted living part. The dementia or Alz (still don't know for sure what she has) was getting worse. So, my brother and his wife took her in to their home for the short-term. She was finally able to adjust to her new environment, but it took a couple very tiring weeks. She's there until a place opens up here back in Washington (where she still has a home - just around the corner from my husband and myself). My brother says she spends about 90% of her time trying to figure out where she is. And just this morning, she didn't recognize my brother - her son. It took several moments for her to finally call him by his name. So, the disease is progressing, but she seems so much more at ease when she's with 'family'. My brother and I feel we are the only connection she has left, and she trusts us.
SOOOO....this is where I need your opinions.
She has a wonderful care-taker/companion that comes in 3x/week (she's in adult day-care 2x/week). She's currently taking care of a hospice patient during the weekends. She'd be willing to come up her and live with my mother in her home (1/2 block away from my home), once her patient passes on. We're also on a waiting list for placement in a fantastic adult family home that only takes Alzheimers/dementia residents (total of 6). But it's a 90 minute drive from where I live. My brother and I are really questioning what will be the 'right' place for mom. My husband is a bit reluctant to have her living next to us again, because he knows it would be stressful. But she'd have her live-in help. In many ways, having her back in her own home (just around the corner) may actually be LESS stressful since I'm not having to drive 3 hours just to see her.
Have you heard of success stories where the Alz. person is able to remain at home with full-time help?
I wish we could ask her and see what she thinks, but she's just not capable of making any choices or decisions.
Thanks so much for your honest opinions.
Caroline
WA state

 
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Old 10-08-2010, 05:58 PM   #2
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

Caroline... I thnk there is a right and wrong for every situation and family dealing with this disease. Can you afford a live in full time. Would the person have a back up if she were ill or on vacation? Is she experienced with Alz.?

My mom is in a facility and has been for a few years now...with the latest move a few months ago to the locked Alz. unit. Along with her regular care, we have hired private aids to spend part of the day with her due to her behavioral problems. We are having a very stressful time right now and her private aid asked me if it wouldn't be better to have her at home full time with 24 hour hired care. First of all we figured the cost and it was much more for a live in than the facility, even with private aids part time..secondly, as much as I think she might do better with family around, as you said, would it be right for us. Dealing with this disease is like walking a tight rope...is it right for her and is it right for us? You have to consider it all. Right now I know my mom is with a private aid and hopefully close to going to sleep...and I am sitting on the couch watching TV and typing to you. If she were here or across the street, where she used to live, would I feel compelled to go check on her...and if she wasn't doing well would I be able to come home and leave her to the aid. It is hard and we have to find the balance.

One plus for me is that mom's facility is only about ten minutes away...I would be concerned with the distance you are talking about but if it is a good one, I would be willing to drive it.

Love, Meg

 
Old 10-08-2010, 09:25 PM   #3
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

I really liked Meg's answer. So much depends on the patient, family, caregiver(s) and options. Caregiving gets tougher and tougher. We used day care during the day and I was the caregiver at night and weekends. We also used a paid caregiver in the home a few days a week for about two years. This lady was great and worked as a nursing home aide, but eventually DH's behaviors' became too difficult for her to manage.

It can become overwhelming as a 24-hour job. I found that I was regularly trying to live with 2-3 hours sleep a night due to DH's disrupted sleep patterns...and that's before we even get to incontinence, risk of wandering, and behavioral issues. If you try to have a live-in person with your Mother, you'll have to work out a plan to give the caregiver time off. You'll also have to figure out what to do in emergencies, or if the caregiver becomes sick or quits. A paid caregiver won't work 36 hours a day (citing the book on Alzheimers care!).

You'd have to ask the group home how they deal with the range of Azheimers' behaviors. At what stage do they ask the family to make other arrangements? Do they handle incontinence and personal care like showering and dressing? Is someone monitoring the residents at all times? What is their backup plan if that person doesn't show up? Do they have any activities for the residents, or are they on their own?

I'm a fan of Alzheimers' day care, since it let DH socialize instead of just being restricted to the house. There was always a staff to have activities, they provided meals, and the daycare center even made arrangements for a visiting podiatrist once a month. I'd suggest using day-care with the live-in caregiver if you choose that route.

I'd also suggest considering full-assisted living if possible instead of a group home. We ran into problems getting DH into a nursing home when the time came, since many of the nursing homes were affiliated with assisted living facilities that had priority for their open beds. The fewer moves for an Alzheimers' patient the better, since changes in routine can be disruptive. Rather than try a group home and then move into a facility eventually, it might be good to try to settle her somewhere that she will be able to stay longer so she can get adjusted to a particular place.

These are just suggestions, though. Every patient and family situation is different, and your Mom might be happiest with the caregiver or the group home - it's hard to tell. Whatever decision you make will be the right one for her at this point in her disease. You may make changes in the future. It won't mean that the decision you make now is wrong, only that her needs will change.

 
Old 10-09-2010, 02:42 AM   #4
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

I would lean towards the Alzheimer care facility, simply because no live in help is going to be availalble 24 hours a day and 7 days a week. That is not even legal! She may live in, but she will have time off, days off, holidays and sick leave. Then YOU and your husband will be the backup people. I understand his fears, fully.

If your Mom gets into a really GOOD facility, you will not be driving to it every day, every second day or even 3x a week. As she has already forgotten her son, she will soon make no distinction between her own home, a facility, or her son's home. The facilitywill become 'home' to her.

However, if it is one of those places where they call you every time she stubs her toe or loses her false teeth, you will be behind the wheel more often that outside of your car. Factor the cost of gas into your equation.

Do you have a great deal of confidence in that Alzheimer home, and why? What evidence do you have that they are taking optimal care of their 6 residents? My Mom was in a Nursing Home with over 500 residents in 5 different buildings according to their level of competence. They had a resident doctor, RNs on every unit, a beautiful enclosed park, electronic surveillance to prevent patients wandering off, enough aides to keep everyone clean, dry, entertained and happy, fed and hydrated. No one ever called my brother (5 miles away). He visited almost every day at various times of day, to make sure things were running smoothly, but was never asked to do THEIR jobs for them while there. . if Mom didn't eat, one of the aides sat down with her and fed her. It had the highest possible rating for NHs in New York State where we lived.

Financially it was a disaster, as it used up all of Mom's money before she became eligible for Mediciad, but it was the right place for her. And for myself, as the 5 year 24/7 caregiver, it was sweet relief. I don't think there is anyone in the world who would do what I did, 24 hurs a day, 7 days aweek, for money! and even doing it for love cost me -- in health and mental health. I took 2 years of therapy to recover from the stress and sadness and overwheming feeling of inadequacy.

Good luck in your decision making.

Love,
Martha

 
Old 10-09-2010, 09:07 AM   #5
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

Wow! You're all very helpful. Thank you so much for taking the time to respond to my posting.
Throughout my search, I checked out over 16 adult family homes and larger Alz. facilities. I kept going back to the one, and I went back there 3 times (unannounced). I even called a certain person at a state agency and asked for recommendations. Although this person couldn't 'recommend' any, they certainly gave the thumbs up for this one. It's really the only place around I would consider putting her. It's truly set up for Alz./dementia. They enlist the help of a local doctor. He'll often makes house-calls. The owner of the home is an RN, and she knows how she wants this place run. It's very orderly, clean but at the same time, they'll allow the resident to keep their own schedule (it's okay to sleep in - they'll do breakfast later for them). The staff (usually 2 or 3 on duty for 6 residents - 24 hour 'awake' staff) will take them to their appointments. They'll take them shopping. They take them on outings; weekly massage and foot care. I just saw a lot of authentic interaction amongst the caregivers and residents. The residents were always well groomed, and their beds were made. Lots of smiles, hugs, warmth. And lots of alarms, fenced yard; no smells. And they do take their residents all the way to 'the end'. However, I think when things get so bad, and she's bedridden, THEN it might be time to bring her home (if this is the direction we are to go). I was up quite a bit last night thinking about the best option, and I'm leaning towards the adult family home.
So,if this is the direction we go, then I'm wondering about the transition into the new place. The manager suggests that I simply leave after dropping my mother off. She assured me that's how it works best (she's been there 16 years). However, my brother and I don't feel we could do that, and would want to stay and help her transition for as long as it takes. They also don't permit family members to join in during meal time, stating that the other residents often feel uncomfortable with another family member joining them at the table. But they encourage family members to take them out for meals and join them there. By the way, the food looked great when I was there. I saw 2 residents helping out with some of the preparation.
There's no question about the care she'd receive there. I know it's the best. But the fact that it's a 3 hour round trip drive is what's bothering me most.
I did ask if they'd be willing to invest in a laptop and use SKYPE (with video) so I could keep in touch with her. If they aren't willing, then I'd set it up for them. But I think the manager really liked the idea of bringing in some technology that would help keep the residents in touch with their loved ones.
So, thanks for listening. Any other words of advice or suggestions are always appreciated.
Caroline
WA state

 
Old 10-09-2010, 12:01 PM   #6
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

It sounds like a really great facility. I suspect your Mom will enjoy having other people around. You've definitely done your research and this group home sounds wonderful. The drive will be inconvenient, but ultimately it's not that far when compared with the time you'd be spending next door if you tried to be her caregiver. (It takes me an hour to get to DH's NH from my office, and sometimes the driving time helps to manage stress).

I've thought about hiring a nursing student or housewife to visit DH when I have business travel, or if weather or some other emergency keeps me from getting to his NH. I don't think hiring someone to stop in and spend time with DH for an hour or two a week would be expensive, and it would make me more comfortable to get an outsider's report if I have to be out of town or can't get there for some reason. Most facilities are great about giving reports over the telephone, but I think having someone visit is always a good idea. You might want to consider doing this too, at least until you're 100% comfortable with your Mother's placement.

It took about 3 months for DH to completely settle into his NH. Visits were fine, but then he would be sad or would try to say he wanted to go home when it was time for us to leave. Those first 3 months were probably the most difficult part of placement, aside from the Medicaid paperwork.

Last edited by Beginning; 10-09-2010 at 12:01 PM.

 
Old 10-09-2010, 12:07 PM   #7
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

Caroline, I see that you have done your homework. That place sounds like the best option!

Many people who have had a loved one in a home, or those who work in such places, tell me it is easier if the family just leaves. No tears, no hysterics. Just a happy smile and bye for now, see you later. Then give her at least a week to settle in.

I used to work at a preschool and the same system worked when leaving young children at school. Happy smiles, bye for now, see you soon and GO. The 'hovercraft" parents who stayed and stayed or hid behind a nearby door to hear what was going on seem to have caused what they wanted to prevent. As long as the parent hesitated to leave, the child's fears were being aroused. The one who hid behind a door achieved the opposite of what she wanted ... her child as well as the staff 'knew' she was there, and the child played to that invisible audience to see if he could get her to take him home after all.

Not that our loved ones are children, but there is some similarity.

I agree that eating with them makes other residents uneasy (who is this new face? Why is she only paying attentin to THAT lady and not to me?)

I think you have a good plan. Worry about "later" (bedridden, etc) if it happens; it may never happen. Mom was wheelchair bound but never bedridden, she was up in her wheelchair until 3 days before she died.

Love,
Martha

Last edited by Martha H; 10-09-2010 at 12:11 PM.

 
Old 10-09-2010, 01:36 PM   #8
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

Yes, I agree with the others about how you have done your homework. It does sound like a wonderful facility. And, Beginning, I think it is a wonderful idea to hire someone to go and check on her when you can't or are far away!
More eyes are always good.

Beginning, my mom has been in the asst. living facility for over two years now but recently was moved into the locked Alz. wing two and a half months ago and she still hasn't adjusted fully..so your time frame of three months gives me hope that she will someday adjust...as soon as she sees me she wants out of there!!

She was recently in the hospital for three days with me there 24 hours a day so we are back to square one. I've stayed gone for a few days now with no intent of going back til Monday...and we will see how she is before I do that.

General question..how often do some of you visit your family member. I had been going 4 days a week...for a few hours each time. I enjoy being with her but it could be detrimental...gotta say though, they call me when she gets out of hand......I can hear your wheels spinning on that one, Martha.

Love, Meg

 
Old 10-09-2010, 03:57 PM   #9
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

A little late, (I have taken a couple of days out of town with my daughter to recoup) but I agree with the rest. Keeping mom at home with a live in is going to be a handful. Nobody can care for a dementia patient 24/7/365 without a lot of help. I wonder if this lady is truly experienced with dementia or just elderly care giving.

The facility you have chosen sounds wonderful and it sounds like you have done your home work on that one. Yes, it is going to take a while for Mom to adjust to any new living arrangements and it might take some anti anxiety medication to facilitate that adjustment. You might be surprised that Mom no longer recognizes her home as her own. It will be just as new to her as the new facility.

The rest have given you great advice and I do hope you can find a placement for her in this great facility soon

Love, deb

 
Old 10-09-2010, 04:26 PM   #10
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

I had also started out visiting 4 days a week. When DH was admitted, I met a lady whose husband had been in the facility for about a year and she told me that she visited twice a week. I find that I'm only getting there two or three days a week now too (once on the weekend and once or twice during the week after work).

 
Old 10-09-2010, 04:56 PM   #11
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

I was there every day at first... then every other day... now it's three times a week and if my good sister goes one of those it's twice a week. Mom doesn't seem to know if I was just there or gone for 2 weeks to Hawaii

Love, deb

 
Old 10-09-2010, 07:17 PM   #12
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

Well... You all have done it again - You've just reassured me that what we're about to do is the right move (move her into the adult home). The co-worker that also had her dad in this same place (she recommended it), said she wasn't able to get there but once a week. And as we all know, there comes a time when they won't recall your last visit anyway. This is no excuse, however for visiting my mom, but it does help minimize some of the stress of being there several times a week. My husband suggested driving there after work on Fridays and visiting then, and also spend the day with her on Saturdays.
Just to let you know... The gal who now spends 2/days per week with her (and is also willing to move to Washington and live-in) does have experience and training with Alzheimer's patients. She's been a savior in my brother and his wife's eyes.
Another note about these adult family homes: Many are spruced up to the hilt and seem to want only those residents who won't cause too many problems (i.e., having to get up at night). I've seen some 'glitzy' places, but the one thing that seems to be missing is their 'connection' with their residents. I think they'd be fine for those who would otherwise end up in a nursing home, but dementia/Alz. adds a whole new dimension to the care needed. All the ones I observed (but the one I decided on) do NOT have 24 hour awake staff. This seems extremely important, and I don't know how they do without, but they seem to.
Thanks so much everybody!
Caroline

 
Old 10-09-2010, 08:59 PM   #13
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

I totally agree Caroline, some look all glitzy when you look at them but the care is not what it should be. That goes for adult group homes, assisted living, locked units, and nursing homes. I checked out a really pretty place that I would not leave my Mom. You have got the right information on the place you are looking at. The previous facility Mom and Dad were in was willing to take their money until they became disruptive. I was very up front with the new facility... My parents are a hand full and they WILL disrupt your day!! The new facility truly understands dementia and it has been a good fit.

I'm like you, I don't see how a facility can run without 24/7 awake staff. That is what worries me about one live in care giver. We did that with my grandmother for a while. But she only worked from Sunday night at 7 PM until Friday evening at 7 am. We had Nannie on the weekends. I do remember having to go to Nannies at all hours of the day and night to help out... and her being at our house Friday night to Sunday night... WHEW!! Eventually Nannie ended up in a nursing home.

Sending my thoughts and prayers that a placement will come open SOON!

Love, deb

 
Old 10-10-2010, 07:33 AM   #14
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

Yes, there is a huge difference between caring for an elderly person in her right mind and caring for a dementia victim. The first type can understand why they are there, who the caregivers are, why they have to follow certain rules, etc. The dementia patient might challenge and complain about everything, put up a fuss, want to go home long after they know what 'home' is (except "a place I was before, when I was well".)

I agree that special training has to be provided for AD caregivers ..and I wonder why so little is being done in educating them. Surely a nurse in training should have at least one course in how to deal with a dementia victim, and a doctor should have several courses. ER personnel included. Ambulance attendants also. They are now lumped in with ''psych patients" and therefore restrained, sedated, forced, intimidated, etc. But they are not mentaly ill; they have lost their mental facilities. It's like forcing a person with a broken leg to walk and punishing him if he doesn't.

Love,

Martha

 
Old 10-10-2010, 11:49 AM   #15
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Re: Need opinions: Hiring full-time live-in care OR place in Alz. adult family home?

Martha, I almost got a neck cramp from nodding when I read your post!! Yes, dementia is included in the psychiatric rotation. There are options as to what the take during that rotation. My niece is in PA school... and her psych rotation is in a weight loss center. You read right. I had one ER intern that admitted that he had one "short course" on dementia. There was only the physiology of the disease and nothing about the psychology of the disease. I think therein lies the problem. They are all about the physiology of the disease. How does it occur. What happens in the brain that creates the problem. They have NOTHING that teaches them how to deal with the symptoms. So they get lumped together with the other patients with limited mental function. A psychosis in an otherwise cognitively aware patient is very different from a psychosis in a cognitively impaired patient. We know the difference... they don't!!

I will have to say that at Mom's facility the CNA are picked for their patience and ability to deal with dementia. They are given training in dementia care giving. The past Rem Director's father suffered from ALZ and that is why she "got in the business". She would reinforce proper techniques on a daily basis. That is what it takes and it's rare you find it.

Love, deb

 
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