Which is better, care provided in a facility or in-home care?

It is so frustrating to know what to do with one's LO.
Your choices are:
#1 Live in place with home health aides coming in.
#2 AL
#3 SNF
#4 Making sure to choose the one that will be best for all involved.

Jazzy,

I think it all depends on the person. AL is one thing. A nursing home is another. My mom was in a nursing home's longterm care unti for two weeks after being on their rehab floor for 4 mos after a stroke. The longterm unit was an absolute nightmare and intolerable. She had a horrible roommate, they would just park all the residents in the world's most depressing "TV room," and let them sit there all day. My mom is not demented, so she was fully aware of her surroundings and begged me all day to get her out.

We were extremely lucky because her apartment (in which she lived alone) is fully wheelchair accessible. She needs 24/7 care and in NYC that is now being covered 100 percent by Medicaid (after shelling out a lot privately before that went through).

She has 2 caregivers. One does 4 days, one does 3. One of them we have had since the beginning and she is just wonderful, one of those rare ones you feel you can't live without. The other ones have been a mixed bag. A few were let go by the agency, but I have now fired 2 of them - one who was sweet, but very young and not up to the level of care, and one who was a total prison guard, with not an ounce of warmth or humor. Her replacement just started yesterday and I am nervous. She's very kind, but older (60 ish) and does not seem comfortable moving my mom from bed to wheelchair which is nerve-wracking. All the other aides were able to do this with no problem. We have a hoyer but no one else has needed it and I am hesitant to use it because it just makes simple transfers complicated and makes my mom feel more like an invalid.

Again, it all depends. I'll keep finding new aides if I have to rather than ever put my mom in any of the nursing home options in our area.

The caregiver we found for my MIL was a middle-aged lady who had been cleaning house for a neighbor for some years. She was a very competent, sweet lady that my MIL grew to love. When MIL became too much for us to deal with, we tried a convalescent hospital for her, which she totally hated. They put their patients in wheelchairs and left them there all day, but most of them were too disabled to do activities. That lasted a week. Fortunately, a SIL was able to take grandma, with a hospice nurse who came by a couple of days a week and taught my SIL how to take care of her. There were several daughters in the area that could do some respite, and I was there for her last night. I know several women who do housecleaning (not for an agency) and some of their customers are housebound seniors. (This might be a good pool for finding carers.) My nephew found a young woman through a church in their small town who loved older folks and adopted my brother and was extremely good with him. Last I heard she is now caring for another senior. I suspect that the personality of the elder makes a difference in how well they do at home or a facility; some people prefer being alone most of the time and some don't.

If you can care for him at home that is the best, however if it gets to be too much you should have him in a Memory Care Facility. My husband has had dementia for five years. I work full time and I'm exhausted but it would break my heart to have to put him in one of those facilities. I went through eight caregivers before I got the two that I have now. They are not great cleaners but they show up on time and have never asked for time off. That is most important to me as I work and cannot have someone not show up. I have them through an agency and I know they only make $10.00 an hour so at holiday time I give them something extra out of my pocket. My husband goes to adult day care three days a week and he loves it and they love him. If he did not go I am sure he would have passed away already.
Can't tell you which is better but I believe that as long as you can keep him home in his familiar surroundings it is better for him.

Trust me, you can not count on anything or anyone to take care of your loved ones. My mom is in assisted living, and my god with the brochures that were sooo beautiful and nutritious meals and the BS that this is your home and we work "for you" is all hog wash. That's why I only wk p/t because you have to WATCH everything!!! My motto is anybody hurts my mom I will hurt you. God bless and good luck.

I have cared for my mother in the home we built on our acreage for 10 yrs. She has Parkinson's and Dementia. I had luck with two helpers, but still trapped and not able to go anywhere with my very caring husband for more than a trip to the store or a lunch out. Of course the short time I am gone the cellphone is by my side and yes it rings constantly with either mom or the helper calling for one reason or another. January she had to go to Rehab after a hospital stay 4 bad falls in 2 hours. I can't lift her and my husband is disabled so he is just moral support. Since she can't stand safely let along walk it turned into a nursing home setting. I am so relieved that she is in a super safe environment, and I don't feel guilty anymore. She goes around the entire facility shuffling in a wheelchair. She has developed friendships, and is very social. She is safe 24/7 with a fantastic staff that I now consider family. I still let mom think she is going to go back to the way it was, but it's not going to happen. For the first time in 10 years my husband and I are going to have an actual vacation:-) I can't express how excited I am knowing mom is totally safe and happy so I can have some much needed time with my wonderful hubby. I have to admit I was so focused on her staying home that I fought what was needed, but now I have seen how wonderful it can be for her. Now I walk in with a new item for her closet, treats or flowers and get to be her daughter again. Yes I am still responsible as POA but much less stress.

I've had 3+ years experience with 3 different agencies and one AssistedLiving. I agree with all of the above. When you find good caregivers they are worth their weight in gold. 24/7 home care was costing about $16K a month and I was still there at least 60 hours a week between dealing with doctors, pharmacies, insurance companies, home maintenance problems, Caregiver's canceling, etc. As my Moms Parkinson's and dementia progressed I had to place her in a care facility. They have provided an environment for her for the past 5 months that I could never have created at home. It is interesting to watch the connection between dementia residents as they relate to each other. Now it requires 2-3 caregivers to transfer my less than 100# Mom. She's where she needs to be and I'm so grateful. Prayers for you in this decision.

If you can find a good AL, they can be awesome places to use, if you can afford them. They have lots of activities going on and are legally responsible for providing the best care of your loved ones while they are there. There is never a better place for them than home, assuming that there is round the clock care there by family or friends, or even someone that comes routinely over the long haul that they can learn to like and trust. But, this is not always possible, and if one person is responsible for their care, they definitely need time away routinely. Just keep in mind that, if you do decide to use an AL, whether part time or full time, this can be very upsetting to someone who has any dementia going on. Any change in their daily routine can upset their world. However, if everyone gives them plenty of time to adjust until the new place becomes their 'routine' and they get familiar with everyone there, it can work well.

I have d excellent privately hired caregivers. Never had a good experience with licenced agencies. The success in finding the kind of caregiver I need has been time-consuming on the front end, and easy and peace of mind through the rest of the time. I went to every church in the area and asked the secretary for references of people who had used caregivers. From one afternoon of investigation, I got 20 names of people to interview over the phone, and from that list, had in person interviews with 6. I got references from each one, and can pay them more what they are worth, but still pay much less than an agency. I've had the same 3 private caregivers for my dad for almost 1 full year. The agency caregiver experience has been completely different. Don't show up, ask for loads of a days off. Seem disconnected and not invested in my dad. Remember, the same type of employee that an agency provides is the same type of employee that a facility will provide, and you're paying a premium for less than adequate care in many cases.

One more aspects about in home caregivers for me is that I am ultimately responsible for my parents.. even with a caregiver there. I cannot go out of town or completely take a day off. The responsibility is always there. I am always checking... checking what they do. ..fearing for the next downward spiral.

I know some of this responsibility will remain when they are in a facility but it shouldn't be as limiting in my life. I have been 4 years without taking any time off. I worry about the next sick spell that will require hospitalization for one of them.. while I am still left to care for the other.

Any infection.. like UTI's, bronchitis, pneumonia... are a constant worry for me. The last bout my dad had with pneumonia he was hospitalized while I was left careing for my mom who also had bronchitis.. both took a scary downward mental spiral while they had an infection. It was a couple of weeks of sheer h*ll and I still to this day (months later) don't think I have gotten over it yet.. the exhaustion is still there.

I am also going back and forth in my mind about facility vs at home. The biggest issue right now is that I don't think I can physically make it much longer in the current arrangement..it is too much for someone with no family support. I hate that the deciding factor may be me.....

For me, after 9 months of competent caring in home care for 5 hours a day, I made the decision to move mom to an ALF where she can age in place. This was triggered by the caretaker leaving to move to a better paying job, and the agency was not able to find a replacement. The ALF is a godsend. She has a steady routine, surrounded by a caring staff and nice neighbors, with interesting activites. She is thriving, putting on some much needed weight, and her doctor is happy with her bloodwork numbers.

She was upset at first, and still asks me every week if I would consider letting her live at my house again (she does not remember that she was here for almost 4 years and was miserable for most of it).

The best part is I know she is well cared for while I am at work, and I can go back to being her daughter instead of a stressed out caretaker. Two weeks ago the staff noticed that she was not quite right, called her doctor, who said to get her to the ER, they called me to ask which hospital (we have 4 to choose from) and it turns out she had low blood sodium, so some medications have been adjusted. If she had been home, we might have missed that sign, just thinking she was having an off day. That alone makes it worth the money spent. In my opinion, the price of the ALF is a much better return on investment.

I thought about having someone come into my home for a couple of hours a week to give me respite but I really don't want someone I don't know coming into my home. As much as I hate to do it I'm leaning towards Mom moving into an AL facility. I believe it would benefit her. I want her to have a more rounded full day. And I need my life back. I hope that doesn't sound selfish but I've cared for Mom 2 years without any help. I gave up my job, social life and identity. I'm 67 and I would like to go visit my kids and travel some. I love her dearly but my mind is tired!

For the 1st year we used caregivers, they were mostly unacceptable for many of the reasons mentioned by others here. Then I realized that when I specified the days & hours, the agency was sending whoever was available. So I told them how many hours I wanted covered & asked that they send their best, whenever they were available & I adjusted my schedule. It wasn't always convenient for me, but I got two good caregivers & I got my respite. These 2 were with us for a year, until my husband died.

I have, so far, had 3 caregivers for my dad. One lives in his mobile home on his property. She is good with him and does the majority of hours/days. The other 2, well...first one could not handle my dad's negativity and quit. She was supposed to do light housekeeping but really didn't do a good job with her dusting. She would be on her phone when dad was talking to her at breakfast....infuriating to me because she is there for companionship too. (I also have a camera in the home).

The last care giver I hired told my dad and the "live on property" care giver that she had had a brain tumor with chemo and radiation. IDK if the things she did were because of this. She did NOT tell me of her brain issues. But, she started bringing food that she had received from her MIL. Huge tubs of pasta....after I told her dad didn't like pasta. She brought her own food and kept it in dad's fridge (she also was cooking meals for her family but I let her since dad was supposed to be getting this food too for his dinner.) But she used all 18 eggs the other caregiver bought and when "L" came over the next morning...no eggs for breakfast. She had made a quiche for her family but dad didn't get any. She volunteered to wash the drapes in the dining room and living room. Then she re-hung them incorrectly and lost 2 panels and a tie back. How on Earth do you Lose them??? But the final straw was dad asking me to let her go. She had asked to borrow some tools. She had her son (or 2 sons) at dad's house and they went into his shed and came out with 3 hammers that they borrowed. I texted her and told her to bring them back. I also said to her "don't borrow anything else". That next work day she brought back the hammers and them proceeded to tell my dad "I may need to borrow them again next weekend". Right after I told her "don't borrow". So, then it was Friday and she made her own schedule. I noticed that she was leaving 15 min early at breakfast and lunch but coming 1/2 hr early at dinner (to cook) so I was willing to let that slide BUT she took her daughter to a dr appt without telling me. Worked 4.5 hours that day but billed me for the usual 6. So I let her go. She was saddened and shocked. What had she done?? She didn't "get it" when I explained it.

I used 2 online agencies to hire these gals. I know my own daughter has posted to get employment on Care.com (nanny) and she is a very honest, sweet person. So, I don't think they all are bad. But from what I've read you may need to go through several before finding "the one". And I've hired older mature women (40's).

I contacted a nationwide home care org. and spoke with the owner. They will send out care givers and if that one needs to be gone they send replacements but I didn't use them because I don't want a lot of people coming to dad's. It makes him nervous. He doesn't even want me to hire anyone else. He likes "L" and just wants her. But I feel the need for a second person because "L" doesn't work Mon/Wed and she needs a break too.

Hope this helps.

What a question? There wasn't a facility I trusted with my father. They were ontop of it when I was there which was everyday but dad would tell me things that would make my blood boil when I wasn't there early in the morning. As for home care I find them all a joke when I brought my dad home I still did all the work. And when I was gone and my sister was there the caregivers were horrible to my sister and dad leaving him in a wheelchair for 4 hrs barley able to sit upright. He has butt ulcers no long than an hr in his chair I was furious when I got there he was leaning to the side, and had been for hrs. And it's sad cuz the girls working only get 12 bucks an hr so you know how much the company makes when your paying 23. But I feel it's there job either you love it or your in the wrong business cuz your not making money for it. I have found one agency that is dependable and helped me out when I really needed them. Don't know if you can say names of the agencies or not. And as for when do you know when there just to tired to go on. You will know after a yr of watching my father try to walk again and the pain it cost him trying. Last time he went back to the hospital after being home I knew he was tired so I simply asked him what he wanted. Are you tired dad do you just want to stay in bed and stop physical therapy he said yes I told him that was fine that's all I needed to know. Even though I was there everyday weather the hospital rehab facility or home he was the one going through it. I felt like I had failed him cuz I saw the struggle and knew he only did it for us and my mom but reality was he was so so tired. The last time he went to the hospital than to the nursing home for his final days I could see the relief on his face but also the sadness cuz he knew he was done. He passed December 30 on his granddaughters 31st birthday. So it's been extremely had. One thing I know he's not fighting for us any more he's finally at peace. I hope this helps I know it's not easy but if your still long enough and watch you will know. God Bless

What a question? There wasn't a facility I trusted with my father. They were ontop of it when I was there which was everyday but dad would tell me things that would make my blood boil when I wasn't there early in the morning. As for home care I find them all a joke when I brought my dad home I still did all the work. And when I was gone and my sister was there the caregivers were horrible to my sister and dad leaving him in a wheelchair for 4 hrs barley able to sit upright. He has butt ulcers no long than an hr in his chair I was furious when I got there he was leaning to the side, and had been for hrs. And it's sad cuz the girls working only get 12 bucks an hr so you know how much the company makes when your paying 23. But I feel it's there job either you love it or your in the wrong business cuz your not making money for it. I have found one agency that is dependable and helped me out when I really needed them. Don't know if you can say names of the agencies or not. And as for when do you know when there just to tired to go on. You will know after a yr of watching my father try to walk again and the pain it cost him trying. Last time he went back to the hospital after being home I knew he was tired so I simply asked him what he wanted. Are you tired dad do you just want to stay in bed and stop physical therapy he said yes I told him that was fine that's all I needed to know. Even though I was there everyday weather the hospital rehab facility or home he was the one going through it. I felt like I had failed him cuz I saw the struggle and knew he only did it for us and my mom but reality was he was so so tired. The last time he went to the hospital than to the nursing home for his final days I could see the relief on his face but also the sadness cuz he knew he was done. He passed December 30 on his granddaughters 31st birthday. So it's been extremely had. One thing I know he's not fighting for us any more he's finally at peace. I hope this helps I know it's not easy but if your still long enough and watch you will know. God Bless

My preference is in home and I'm the caregiver and am extremely fortunate to have a neighbor who watches mom when I work part-time. Agencies are really hit or miss as are the assisted living. You have to put it in perspective. You know how are it is to care for an aging parent and you love them, so imagine how it is for someone who has no connection to your parent and it's just a job and low paying at that.

Castle,
I totally agree with you. There should be a posted list of what is expected and fully discussed with individuals so that most of the misunderstanding are handled before and not after the fact.

Hi, I've seen both kinds of caregivers, during my work as a home health aide and nurse's assistant over decades. Because I learned caregiving from helping my own disabled brother, I always saw engaging the assigned person as a major part of my job, and I also realized from my brother's situation, that little things matter.

The best homes were those that gave a list of regular chores, with a daily schedule of each of a different house need - posted on the refrigerator. So, one day of the week, was change sheets, another was empty all trash, do laundry, clean bathroom... It was helpful to post the list, for that kept the house care work divided between different people, with one chore allotted each day - it helps to supervise and decide what would be helpful, and when assigning, consider a particular aide's strengths - don't assume they are all the same on the same job but some cook better, some know how to socialize, some don't do anything without directions. And when you meet with the agency, ask input of aides first, so their voices go into the plans.

I have to respond to the comments about home caregivers. My wife was diagnosed w/AL in 2008. I took care of her for 4 years myself and then it became too much for me and I had to get some help. I used one agency but could not afford them so I started looking for help from outside. I have had very good fortune in that I have four different caretakers for five hours per day and one hour in the evening and in the past 4 years have only had one instance where I had to let a caregiver go because of incompetence. I strongly recommend home care if at all possible.

My mother and I are both home caregivers. It is so hard to find people that are trustworthy and really do their job. Mom works with people who are just like you describe and the patient's daughter won't fire them because she can't find anyone else in our area to stay with her Dad. Sad. As for your husband, I am really glad you are being proactive and taking care of yourself. Full -time caregiving is very stressful. With the dementia, in time you may find that he will be more determined not to go anywhere even though he enjoys it once he gets there. Dementia patients like routine and the same surroundings. I suppose it gives them as sense of stability and comfort while losing all they have known. Eventually the best setup would be to keep interviewing and find one or two caregivers to take shifts and work on activities with him. There are loving, dedicated caregivers out there. Don't give up, and I am so glad to hear you have the cameras! Good luck with your husband!

I was the personnel director at a NYS licensed home health care agency. The policy was for applicants to obtain a police background check from their local police dept which was very general in terms of verifying criminal activity. The agency just wanted a body in the home in order to collect commissions. Most people hired were not qualified to work without supervision. I would urge anyone considering home care to look into an AL or SNF. Agencies are rated by the county they're located in. I left this job after 6 months.

My mother took to the facility right away! Shocked my tearful sister and me.... The facility can provide active socialization......something I couldn't provide around the clock and caregivers were doing just that...giving care to give me help. Placing mother was one of hte best things we did for her with Alzheimers. She has been able to age in place, meaning she will never have to adjust to new surroundings. Her earlier years in the Blair Unit prepared her for the expectations and routines. She no longer knows me, but I know she is well cared for and has stimulations around her. It was a win win situation. Of course, finding the right home was a chore....but this one has been wonderful for Mother and the other residents (30-36).

Whatever works and what you can afford.

My mom's AL is about $3,600 per month--and excellent, they do her laundry, hair, nails... She loves it. . Expensive but she can just about afford it. I reckon that in-home care would come close to $6,000/mo. for 12 hours each day. So, a bargain I am happy to pay for.

My mom could not be left alone and I could not handle the tedium of her daily care, dressing her, etc. I have a sick husband (83 ) so am dealing with that.

All in all, I thank God every day that my mom is in AL. Life before that had become hellish.

You are asking which is best for the patient. I ask, which is best for you? You are the one most likely to survive. One of my husbands had Parkinson's and died. He didn't have dementia. The other had dementia and several diseases. I cared for him under home hospice care until he died of a fall in a nursing home. Talk with your hospice social worker. Wishing peace for you and your husband.

I found two wonderful women who take turns caregiving each day with my Mom. I have them cover 5-7 hours per day. I do the rest.

I found them. Then I told the agency...these are the people I will use...if you don't hire them on..some other agency will...and I will go to that agency. I told the agency they had to pay them $15 per hour. I did not want someone who isn't paid well enough to care about their job.

Now, at first the agency didn't want to do any of that....but it was that or lose my business. I wasn't going to allow underpaid, complete strangers in to care for Mom.

It has worked great! But, the few times I used a straight agency gal to fill in.....I was not happy with them. Mom herself even fire one!

Our first caregiver pretty much ran out the door screaming ,, the new one the agency sent yesterday put on her gloves and started picking up poopy things right off the bat and didn't even hedge ,, I guess you need to make sure they know the real deal. My mistake was cleaning up the mess before the first "companion" got there ,, so the house didn't smell bad and look terrible. so I figured id not clean that week and let her have a go at it,, she didn't return. If you're able to get a good one they are golden .. never let go ,,,

On the other side of the coin, I have had excellent results with caregivers for my Dad [95]. Two of the caregivers had been with him for over a year, first when he lived at home, and then when he moved into senior care, to keep the routine. They helped him move, and later even insisted to take a double shifts when Dad was on his last few days.

These caregivers came from a licensed well known Agency which was bonded and insured. They treated their caregivers quite well. If one was unable to do her shift due to illness, the Agency found a good fill-in, even the Admin Staff would fill in if need be.

A few weeks we needed overnight care, and the caregivers were those who only did "overnight" thus were required to stay awake the whole night. It was ok with me if they watched TV or used their iPhone, just as long as they were alert to the sounds of my Dad getting out of bed as he usually needed help as he was a fall risk.

The two regular caregivers also would drive my Dad over to visit my Mom who was in long-term-care as Mom needed skilled care. They set the time to be there at noon so the caregiver could help feed my Mom. It was ironic, this caregiver was the one who my Mom shooed out of the house as Mom didn't want strangers in the house.

One late evening caregiver had a feeling that my Dad needed to visit my Mom that evening, even though he had already visited her at noon, Dad didn't want to go, kept saying no but eventually he gave in. He was so grateful he did as my Mom [98] had passed on in the wee hours of the next morning.

The caregivers were expensive. In my area it runs $30/hour with higher cost for the weekend shifts. As I look back, it was worth every penny.

Jazzy, it is always so hard to know what to do in certain situation, as every case is different.  For me, I wanted my Dad to be happy with his decisions, and he was. 

Jazzy2, I can so relate to your anguish! "do I keep trying to improve his quality of life or let him Rest In Peace?"

My husband had Lewy Body Dementia, which is extremely similar to Parkinson's with Dementia. He also went to a day care 2 to 3 days a week. He too wasn't keen on going, but he did like several aspects of it. I did it frankly for respite for me. And at the quarterly care conferences when the social worker asked why he was coming he said, "So Jeanne can have some time to do her things." We also talked periodically about care centers. I never promised him he would never be in one, but instead promised I would never abandon him. I would always be his advocate and his loving wife. I wanted the best care for him and that might mean going to a care center.

When he got too weak to go to daycare, we had a personal care attendant 32 hours a week. I guess we hit the jackpot! I was home while she was there, working from home. It was awesome to have her help Coy get dressed, shave, etc. and then come to my office door to greet me good morning! She fixed him breakfast and lunch. She sometimes took him out for walks. She did jigsaw puzzles with him. She took him through the exercises the PT recommended. He did them more willingly for her than for me. ("She's not bossy.") She looked through our family albums with him. She helped me take him to the county fair. She absolutely contributed to the quality of his life ... and mine!

When Coy went on hospice care, he slept for long periods of time. She was very helpful when he was awake, but bored while he slept. She wanted things to do. I gave her tasks like organizing my messy linen closet. I told her that this was not in her job description and she certainly didn't have to do these tasks, but she wanted to keep busy. Of course she stopped as soon as Coy was awake.

Did I get the only gem in the home-care pool? Or was it because I was in the house while she was there?

It took a while into the dementia journey, but I came up with clear understanding of my caregiving purpose. I would maintain the best quality of life possible for him as the disease progressed. I measured decisions about medical issues and other things by that standard: will this contribute to the best quality of life he can have now?

I rearranged our bedroom when Coy went on hospice. I hung one of the puzzles he helped put together. I bought CDs of music from his youth and played them when he was awake. I offered food but didn't push it, and if he wanted some I made his favorites that were easy to eat. He lit up when I brought him a Popsicle. Even for the five weeks he was on hospice I did what I could for his quality of life.

I am sorry this is so long, Jazzy. I just got carried away by the similarities in our situation. I wish you the very best in this situation. If moving him to a care center of some kind would improve your situation and at least not be a detriment to his quality of life, then don't hesitate to do that. And above all -- No Guilt. You are doing your best in a very challenging situation. No Guilt.

Right now, I have my husband home with me but I take him to day care a couple days a week and leave him overnight occasionally.