I've read so many negative experiences with in Home Care, AL, NH -- can anyone share their positive experiences?

Thanks for your kind words, GardenArtist.

Jola, your posts are excellent and thorough, and provide good insight into a very organized approach. Thanks for taking the time to share them.

A few (more) things from my heart about home care (continued from above).

(PART 2 - FOR AGENCY CAREGIVERS - A few things to help keep your client happy)

1. Before visiting a new client home, find out if possible the family's PRIMARY CAREGIVING CONCERN (in addition to knowing your agency's care plan for that client.) For example, perhaps the family's primary concern about the new agency caregiver is that the caregiver gain confidence in learning how to put on and take off a special type of external catheter. Or that the patient is always in bed by 9 pm or at the breakfast table by 8 am. If your boss can't tell you the family's primary concern, ask if he can possibly find out before you're sent out the first time. If he says no, ask the family yourself when you get to the house.

This one thing can make a big impression on your client AND save frustration over something that may seem small to you but a big thing to us.

2. We appreciate someone who wants to make our loved one as comfortable as possible. If you're wondering whether Dad would prefer the grape juice or the orange juice, just ask.

3. (My number 1 gripe). If you're someone who likes to talk and talk, please recognize that your client may not necessarily be someone who likes to listen. Conversations should be give and take, not long lectures about the caregiver's prior work experiences and personal life, especially at the beginning of the care relationship. (I know this one is really hard for some people.)

I can't tell you the number of caregivers we've had to reject after their first week simply because they could not stop talking about themselves--even when we've specified ahead of time to the agency that we need someone on the quiet side. To Extreme Talkers: PLEASE learn to recognize body language. If your client's daughter is squirming while you're finishing up a 5-minute lecture about your son's toilet training, don't begin another one about your daughter's.

While many clients need a caregiver to give a lonely family member some company, other families need a caregiver who recognizes their elderly parent wants more than anything to feel comfortable in their own home with their normal routine--which doesn't include entertaining a caregiver. (When appropriate to the caregiving situation), ask a family whether you should sit in the same room or in another room while your patient is watching TV, etc.

4. Something extra that is SO appreciated: Taking someone to the bathroom one last time near the end of your (day) shift.

5. Recognize we're sometimes stressed. If we're not smiling today, it likely has nothing to do with you. For your own health and well being, try not to take things personally when possible.

What you do for our loved one is SO important. Although most of us realize that, we may not be thanking you nearly enough for all you do.

My positive experience is with our current home care agency. We have tried four or five different agencies over the past 15 years. The one we have now is the best so far. We've been with them about a year.

We currently use agency caregivers approximately 48-50 hours a week. The current agency employs only CNAs, who typically have more training than an HHA (home health aide). The agency we use is pretty strict about caregiver attendance, unlike the last agency. This has been immensely helpful.

A few things from my heart about home care:

(PART 1 - FOR FAMILY CAREGIVERS - How to get the most from your home care)

1. Document your primary care needs BEFORE you meet with the agency for the first time. Prioritize your must-haves and provide that list to the representative. Stress the number one thing you need and insist they send only caregivers who can meet that need to your satisfaction. Do you need someone who is excellent with transfers? A good listener for a lonely parent? Would a caregiver who talks endlessly about her own life get on your parent's nerves (and yours?) Would your elderly dad prefer a male caregiver instead of female?

Don't be shy if an item or two is critical to a good fit. It's easier for the agency to screen out what won't work up front, instead of sending endless people to your house only to be rejected later.

2. Be organized. Caregiving agencies can have A LOT of caregiver turnover. If home care is your long-term plan, you're bound to be answering the same questions over and over whenever a new caregiver is sent to you. A simple way to make this less painful is to develop a set of documentation for new caregivers to use as a reference until they get familiar with how it works at your house.

For example, here are some of the typed sheets we post in the house for our caregivers

a. Daily Caregiver Requests sheet (on a clipboard). Our caregivers often refer to this as 'daily charting'. It's a typed sheet with today's date/shift at the top and a list of the main items we need done regularly (with an 'X' next to each item we want done on this particular shift): before-breakfast meds, after-breakfast meds, evening meds, breakfast, lunch, shower, shampoo, oral care, PT home exercises, speech exercises, cleaning the bathroom, making the bed, feeding the cats, and so on. (I also include other items as little reminders--such as: Remember to remove your food/drink from the refrigerator before leaving.)

All the caregiver has to do is scan the list for the items we want done, and check the items off as they complete them. I find this also helps ensure that things actually DO get done consistently.

b. Dad's Daily Peri Care and External Catheter Instructions (from his doctor)
c. Description of each PT home exercise.
d. Description of each Speech exercise.
e. Dad's Daily Foot Care Instructions (from his doctor)
f. Instructions for cleaning Dad's shaver.
g. Caregiver Updates Sheet (on a clipboard. Here I post updates about Dad's health that they need to be aware of; for example, results of a recent doctor visit, something they need to do differently when he eats lunch, a new topical, and so on.)

All together we have maybe 20 or so separate sheets on different topics taped here and there in the house-- on Dad's dresser mirror, on the bathroom mirror, in a binder next to his lift chair, in the kitchen, in the foyer, on a clipboard, and so on. Saves countless time and stress, both to me in having to repeat myself again and again and for the new caregiver who may be shy about asking.

3. Pick your battles with the caregivers.

In agency home care, the caregivers typically have other clients besides your family. Each home is different and there are SO many things to remember. Prioritize the items that MUST be done a certain way over what would be NICE if it was done a certain way. Don't nit-pick over how they make the bed when the more important thing is that your mom with poor circulation is left sitting with her feet up, not with her feet down.

4. Pick your battles with the agency.

Likewise, the agency may have 100 or clients to please, each with a set of constraints that must be applied when trying to put together the weekly schedule. Each caregiver has a set of constraints of their own (the hours they can work, vacation, time they need to block off, items they're not willing to do, and so on.) And finally, the agency has their own set of constraints--for example, the need to limit the caregiver to 40 hours a week, total, to avoid paying overtime.

Give the agency as much notice as possible whenever you need to cancel, add, or change caregiving hours. (I would suggest always emailing your requests so that you have in writing what you asked, for if it's disputed. If the agency insists phone calls are better, then provide both.)

Be firm when a caregiving situation isn't working out, but don't expect them to find someone new that's a good fit for you overnight. This is a field with mega demand and everyone wants their best people. Conversely, if it's clear you're not getting their best people no matter what you do and how patient you've been, consider making a change. Some agencies are clearly better than others.

4. Smile. It really does go a long way.

5. Be gentle. Be grateful. It's so easy when already stressed to forget the caregiver (and agency) who's only trying to help. Remember that he or she is dealing with her own challenges in her own home. Say thank you. A LOT!

Happy in Omaha, that how we are with our IN HOME CARE, I do 90% of the care for my wife now in her 12th year of Alzheimers and only 61 years old. We then use HomeInstead Senior Care, Inc, corp. office is here in Omaha and I personally know the founder Paul and Lori Hogan...great christian couple. We love the caregivers that help us. They bring cards, etc. things Frannie likes, as they love sharing with her. They have over 900 franchises world wide...over 700 here in US.
What I personally like is they do more than just care for Frannie, they do our dishes, put in a load of laundry, mop or sweep the floor, all while caring for her also. At Christmas they helped decorate the house with Frannie and I over the three days it took to do so. They are about $26 per hour so here in Omaha, but well worth it, with all the extra we get for the time they are here. hope this helps!

As a caregiver, I have been in the business for more that 10 years and I have noticed that alot of family members rely too heavily on the ALs and NHs for alot. I would advice that you advocate for and represent your parents in a way that will satisfy their emotional needs......visit them......hug them....let them feel that they are still a member of the family and are not abandoned by you.......sometimes the negative is not the facility.....it is the relationship that the the family membr has with the parent that is not forthcomeig......those unfruitful relationship...breeds fear, anger, depression and sadness in many seniors that are moved to these facilities.......so my advicde is that you should do your research and stay on top pf things and lovongly love and visit your parents who have to live in these places.
Thanks
Andria

This is coming from North Western PA., Mom was a resident in a ALF for 5 years and just loved it there. The aides were extremely professional and very caring, I was there almost everyday, so I kept an eye on things before maybe there could have been any problems. No one place is perfect, you just have to find the right one, and from the start be visible. Mom passed last Thursday, and everyone of the staff had tears in their eye, I guess that says it all. Kathy

I am sure you let the good CNA's know how much you like their work habits-it is a hard job to do day in abnd day out and a little praise goes a long way in making the job a little easier and even writing them a short note would be great.

Mom adjusted easy than i did at the NH. I trust them now although their activities are much to be desired
Medically they care for her, bath her, watch her and make sure she is safe The CNA's except for one (I won't allow him to touch mom) are good. Some are great! The other day a CNA was dancing with my mom and she loved it. Many walk with her indoors and out. Mom just loves some of them and tells them so. They are gentle with her. I am unemployed so I do the activities and mental stimulation and take her out every day.

As with everything else, you should research your options carefully and carefully interview any agency which offers in-home care. There are some really good services out there and some really bad ones. The best firm I have ever encountered is Golden Days Senior Services in Torrance, California. Joy, the owner, will come to your home and do a thorough assessment, answering all your questions. Their caregivers are extremely competent. I cannot recommend them highly enough.

With AL you have to be more careful because there are upfront cost and the monthly rate where I live is about $4000.00 a month-the one my friend is in is excellent -I go to see her twice a week and myself I am having a good time going to her activities and the other residents and the recration staff include me in the activities and my friend is able to express her thoughts-if anyone is looking for an AL in my area I would certainly recomand this place.

My father is in a small group home for dementia patients - 6 clients, 2 round-the-clock rotating caregivers. The unique aspect of this home is that the owner, a young 30something, grew up in a group home situation. That is, she and her siblings were raised in a house where her parents took care of dementia patients. She has, basically, created (for her family of 3 boys/husband) the same exact living experience she grew up in. That has made our experience extraordinary. Her caregivers are patient and kind and attentive. All the food is fresh and tailored to each patient's needs. My Dad is the only man at the facility, and, of course there's an adjustment period, but he has his own room and bathroom, his own tv, and a calm daily schedule that seems to be working out well. Now, that doesn't mean he still doesn't wish he could go home. But I am finally sleeping after 2 years of worrying what we were going to do, how was I going to tell him, etc. There are some great places out there, although nothing is perfect. Best, mb

I would add what I told families who asked which is the best -the one closests to where you live or another responsible adult who can go in different times of the day-the NH we used for rehab did not allow visitore before 11 am een the first whole day he was there and needed his clothes but everything else was excellent and if he had been placed I would have gone back to the one close to my house because it made it easier for my son to visit, In NYState they all inspected at least every 3 yrs. and if they do not pass then it is the next year and any complaints reported -that area will be brought up in the next inspecton even if the facility whitewashes it for the family if you have reported something to the Board of Health. I would just make aa many tours of places as you can because after a few you will know what questions to ask the facility.

I am in Canada, but this may help. Mother had been in 2 ALFs. Ib the first one the director was weak, and one nurse ( at least) got out of hand and essentially verbally bullied mother, and residents were afraid to comment in their regular meetings. This place is considered one of the better ones in her city, but her experience was not good. We moved her to another one with a director that turned out not to be good either., However, after some "fusses", the director was replaced, and now things go as well as they can. The new director is proactive and has a very good way with mother -shows he cares. It has made a big difference. She has Borderline Personality Disorder, so my hat is off the any staff who get her trust, and he has done that. In my experience, the director makes a big difference.

As with any services, depends on actual experiences and many times the perceived experiences of those needing care whom themselves are going through difficult times and transitions.

Bottom line, you have to be your own advocate if your own care, and/or for your loved ones. There is no getting around checking out the places if Assisted Living options - checking out Agencies and Companies, etc., if Visiting Care Services - then keeping watch to make sure care and services are being provided as they should be.

If you can get personal references from people that have got care from good services from some companies local to you - say Church members, friends, etc., I am sure you will get some good ones.

I only have current references for awesome care providers in the DFW, Texas area - if anyone needs these, just post on my wall and I can share them!!

There are quite a few Doctor and RN ran B&B Style Residential Care Homes I recently got info on and can share these. One is an older, but lovely home in Garland that has openings for 2 residents and is offering 50% regular rates as their last resident passed on. My cousin would have had her MIL moved there, but they needed an option closer to where they are in Flower Mound. Any one local looking, let me know and I will get contact info to you.

Keep us posted on your search sunflo2, all the best!

I highly suggest reading the book "When Mom and Dad Need Help", by Michael C. Campbell. It is designed to help you navigate the who thing - and includes wonderful checklists for initial looking, visits, etc. also a CD (print off checklists, etc). He writes from the "been there, done that" point of view and really gives solid advice! It is truly a "Step-by-step Guide to Senior Housing and Care". .

Thanks everyone! Very helpful and diverse perspectives. I agree that we'll need to be vigilant. My mom doesn't want to go anywhere or have any help. She is stubborn and cantankerous and can be mean spirited when something isn't going her way -- so in home care may not be best especially because we live so far away and can't really supervise. My thought plan (implement when the time comes) at present is to give in-home care a chance; if it isn't successful; then will move her to AL and move her near me where we can visit often and at various times and more closely monitor her care. Again, many thanks and hugs. Its never perfect I guess; but when its "good" -- it sure makes life easier for loved one and caregiver.

The best solution I have found, and I can say my experience was similar to yours, is to keep on top of everything. I am not a popular person in the nursing home because I agree with everything, instead I bring up every issues as they arise. It is really not safe to leave someone in a nursing home, assisted living, or home care situation without proper advocacy. Just too dangerous as anything can happen. My advise is to stay diligent and advocate whenever the need is there for you to do so. Good luck.

@ Sunflo2 I don't know any in Virginia...and none in California where I reside...but in Oklahoma, where my 89 year old mom lives, Mays Homecare is excellent! Mother is still living at home but the aides and nurses and therapists who work with her are wonderful and seem to genuinely care about her well being. In that respect, I can relate to golfbard. It also helps that Mother is a real Sweetiepie :), not cantankerous and so appreciative of the help she gets.

When the time came for mom to be placed in a ALF my brother did the initial footwork to tour and ask questions. When we decided the one we liked best, everyone went on another tour. We are really fortunately with the ALF memory care home that we chose. We have both been there at various times and days and the level of care is always high. What really impresses me are the aides that work there. As we know that is probably not a high paying job, but everyone we have encountered has been positive, friendly and shows real compassion towards the residents. The nurses are in constant communication with us about mom.

golfbhard, what is the name of the agency and what is their contact number?

There are good and bad points about home care and NH and AL but mst of my experiences have been good and the nursing home that my husband was in most of the time until they refused him and I have had friends in has really cleaned up their act and now have a good staff of aids working I have found the one who rotate their staff every month or so do better and learn to work together well. The agency I was going to hire for home care inpressed me very much but by that time I knew my way around the health care more-you do have to stay up on things and solve problems before they get out of hand. Also when our NH would not take him-I think because he asked for too much attention I did find a better one with a much better staff and as for home care it was best not to have friends who are aides work for you even though one did work out well-but you learn as you go on and the folks here have had every problem you can imagine so that is helpful. We are lucky where I live there are many NH and AL and home care agencies to choose from. Of course if you hear a rumor take it with grain of salt I heard that one NH caused a friend to die but I had seen the resident and he would not get out of bed that is why he got bedsores that got real bad and his condition was fragile to begin with but other who heard the rumor did not have the knowledge to know the truth.

I have a health in home care agency that is awesome they all want to come take care of mom. They have organized my kitchen drawers, done laundry all without my asking. This is in Indiana. One gal has even brought soupn and one always brings crackers she likes. Don't get the wrong idea, we have plenty of food....to much in fact, they just like doing it. They won the "Small business award" this year.