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

You need the break and it sounds like he is enjoying it. My aunt has Parkinsons and her daughter takes her regularly to a gym to box. It really helps her.
Like you said this could go on a long time. Pace yourself.

I know this is off topic .. but can you tell me why the in home caregivers were a nightmare ?? we are trying this out right now ,, but I fear AL is coming soon.

Not at all Didgens. I've had credit cards stolen, lazy people on their cell and don't even look up when he walks in the room, his incontinence goes unnoticed and, the last straw, the last one just walked out and left him alone. I have cameras in the home so I pretty much know what goes on.

ok ,, thank you Jazzy2 ,, that really helps me more solidly think my dad really needs AL now..

In my experience, I have not had good experiences with in home caregivers. I have been having caregivers in increasing hours for my parents over the last year.

I have caregivers at night and during the day. In the best case they get to work on time, barely do what is required of them., keep my parents from leaving or burning the place down....

The night caregivers have been caught literally making themselves a bed on my parents couch complete with putting their bare feet on the couch (ewww). Both of my parents have dementia and could wake up confused and possible leave the apartment. .. since the caregiver just slept through her shift.

As for the day caregiver.. what I wanted is someone who can do some very basic cooking and who can provide companionship and get them out.. take them out to walk, let them sit out in the main areas in the apartment complex..etc. What I got.... people who cannot even cook the most basic meals, who sit and text and who look over them like prison guards and barely have conversation with them.

My parents have dementia but are mobile and don't require incontinence care .. but do need some overseeing. I don't know if it is just their specific situation that they aren't good at handling...

Whatever the case.. I am so over the caregivers.. texting me all the time.. asking for time off , can they leave early, my dad said this or my mom said that .. etc etc.

On top of all that .. they can get extremely expensive.. even with me taking one shift every day. Even with the caregivers, I am still very involved, can't even take one day off or away. I am currently looking at memory cares for my parents .. I need to have some rest.

out of curiosity ,, where these people hired from a licensed agency ?

didgens.. are you asking me? In my case.. yes.. Licensed agencies.. and I have used 2 agencies.

I was asking Jazzy ,, but thank you Katiekay ,, all this is good to know .. it makes me stronger in my resolve.

I didn't see your post Jazzy...I can so relate!!

I have used numerous agencies and no matter how good a reputation, they are all the same. It's pretty hit or miss. I've also tried hiring on my own but references are very hard to check. My experience is about the same as Katie Kay.

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.

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.

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. 

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 ,,,

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!

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.

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.

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).

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 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 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.

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.

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.

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.

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

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.

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 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 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.