For a long time I've wondered if anybody else had problems with having an aide in your home. By this I mean—does it bother you to have a stranger in your home? Especially now that we have had to downsize, it just seems very intrusive to have another person here. It's much harder to get away from them, if that makes any sense. And it's much harder to have anything private, like personal papers or well, anything.
Since we've been doing this a long time, we've had quite a large number of aides, from at least three different agencies. Fortunately a couple of the aides stayed with us for a long time. At one time we had the equivalent of the Mary Poppins of aides. She was wonderful! However, we have also had some absolute nightmares. And then there were all the occasions when someone was scheduled and didn't show up or call. Or just when you got used to someone, they quit with no notice. Or they liked to comment on our lives or on caregiving decisions I made, like asking me "you'd never put him in a nursing home, would you?" or "why do you need respite?" or telling me that they thought DH was spoiled.
Since we moved, we've had two different aides, both of whom were impossible. One lasted two days, and one only lasted one day. (The one who lasted one day was caught going through closets and cabinets.)
It's not that I couldn't use the help, but it just seems like I am burned out on the issue of aides. Also, because of other medical issues, DH has a lot of days when he is in bed most of the day, and it would be hard for him to have somebody here. Frankly, there are days when I just don't feel up to having somebody here, either. When we have aides coming, it seems like our whole life has to be planned around those hours. It makes scheduling other things, like medical visits—which we always seem to have a lot of—much more challenging. Some days I'm so exhausted that I wonder if I'm thinking about this clearly, but every time I think about even starting the process of finding another aide, my stomach turns over. Help!
Before Kevan went into LTC we had aides and I know how you feel. I often didn't have anywhere to go at that time so I would end up sitting in the car or sitting in my room with the door closed. Kevan hated it and would make them sit in the living room while he spent that time in the basement. When the times are scheduled it's hard to plan anything and they can't always come at a time that is good for you. It can be really frustrating. When he went to LTC I was just lost because I had nothing to do and no where to go. I am going out to lunch today with my group for the fist time in six months. I don't have to live on the caregivers schedule now but it is lonesome now. I was so overwhelmed before that I really need the breaks no matter what but now I have maybe to much time on my hands but I am not tired like I was. I hope you find a solution that will work for you soon. I think you will find that you are not alone in this. I'm sure you will get lots of help here.
Jan, I understand completely! Due to my husband's aggression/violence towards me the psychiatric hospital would allow him to come back home on the condition I had a ft MALE aide to help with his ADLs, etc and more or less to protect me. That was almost 6 years ago, so it's been a very long time.
It was extremely difficult at first having a "stranger" living in our home, particularly a male from another culture (having to take orders from a woman). Not only did I feel like our privacy and private space was being violated, I was constantly having place limits on his requests and behaviors. The cell phone rang constantly and he talked for hours when he was supposed to be supervising my husband. He asked that I pay him $70/week food allowance because he didn't want to eat my food. He requested that his girlfriend stay for a weekend once a month, etc. I would say it took me at least a good year before we all adjusted. Fortunately we've had the same aide now for 5 1/2 years and have settled into a routine, but I still have to set limits.
It's the substitute aides that have been almost without exception TERRIBLE! And of course each time someone new comes I go through all the distrust because I don't know them and they're not here long enough to get to know. And when I have a substitute we never go out because I don't know if I can trust they will adequately supervise my husband. So no appointments, no "rides to nowhere", etc. Without exception each time we have a new aide, my husband's butt is never clean, he's often not shaved and I definitely wonder how well they do the bath.
When I told the agency who's been providing our regular aide and the substitutes about the quality of the substitutes, the owner told me "we often have to scrape the bottom of the barrel to find a male aide to substitute." Gives you a lot of confidence in them, doesn't it? When I told him it wasn't acceptable to provide someone who is unskilled and inexperienced handling a person with dementia and that they had an obligation to provide an acceptable substitute, he basically told me that if I found an agency that could do better, they would hate to see me leave but would understand. After 5 1/2 years and hundreds of thousands of dollars.
Sorry for the rant...back to your feelings about aides. I do think you should reconsider hiring aides because you say you can definitely use the help. I have no practical advice that will help you ensure you're hiring a trustworthy, responsible, caring aide. Since you've also been at this a while, I'm sure you know many of the agency's. I finally did hire a different agency to provide the last substitute and it was a good experience. But I know they want my full-time business, so they sent their best male aide, were very attentive and followed up with me after the assignment to see if there were any issues, etc.
Perhaps you could consult a geriatric care manager and see if he/she knows any good aides looking for work. Another suggestion is to speak with the manager/director of a local ALF and see if they know of anyone looking for part-time work. It still puts you in the position of having to find someone new, but maybe you'll have better luck if you can get a referral.
YES YES YES, we have aides on several different occassions. At one time I had an aide seven days a week. What a bother!!!!!!! I demand alot from them, basically that they do what they are paid to do. That they leave their dadgum smart phone, dumb phone, etc. out of my house. If you let them they will sit on their duffs and text all day long. We have a long term one now that is sorrier than sorry but my DH likes her so she stays (for now). she helps herself to everything in my home. I have set a boundry at my bedroom door, she is not to cross it for any reason. I even came home and found her friend and her friends children in my home helping themselves. BUT, it works for DH and that is why she is there. Good luck, I could write a book on the perils of having home healths in your home. sorry for the rant.
I think it depends on if you need fulltime or just a few times a week with some respite hrs. I have used the same agency from day one and went thru a regime with various aides til I found the one that clicked and was the best match for us. there are tradeoffs. she is great with DH and feeding and entertaining him but does not do a good job trying to change him unless urgent. so I usually just tell her not to bother and I clean him before leaving and upon return. its been really good for us so far. and the agency knows I don't like newbies either so if she is unavailable I just change my days to accommodate her times. not a biggy for me. it does take a bit of work to learn to have people in the home but if you want to be able to get out and some respite you have to work around all that. set a book of rules at first and be a bit flexible and it can work for all involved. its a must if you have spouses at home. earlier the better. divvi
As some of you old timers may remember I had a superb aide, Andrew. He came first once, then twice a week, then at the end, most days for just an hour or two, sometimes at night as well as morning. He lived not far away. Some of the hours, the regular ones, were reported to the agency but not the short ones. He also did my yard work, housecleaning, and cooked great chili! Sometimes brought his mother's King Charles spaniel to lie down by My husband and go to sleep. We only put my husband into a NH when his hip crumbled and the two of us couldn't manage him alone. He was bedridden and incontinent for two years. He died three years ago yesterday, after being in the NH For a month.
However, before Andrew I had a succession of impossible aides, one of whom stole my sterling silver. And we lived in a big two story, 2400 sq ft house. I could easily escape Andrew. And Andrew could cajole him, and bathe him, and watch Curious George with him, in ways that I couldn't.
Now I downsized to a 1200 sq ft house in a retirement community, which i live in with my daughter, who works full time. This is just right for US, but I would go crazy if I had an aide and a demented husband here in this small space. Some people here use aides, and escape the house when they come, or they send their spouses to day care.
But like everything else in this period, it isn't easy to work out.
For the last two years of Dave's life (he died June 8th three years ago), I had an agency provide a caregiver for 5 days a week, 7:30 a.m. until 5 p.m. Monday through Friday so that I could still go to work. I put my silver, jewelry, irreplaceable momentos and all paperwork, bank statements, bills, etc. in one guest bedroom and kept that door locked, so that I felt I was protecting our things. The caregivers not only took good care of Dave, fixed his lunch and fed him and cleaned the kitchen, mopped and vacuumed, and put videos in for him to watch and watched with him. I had four different ones over the two years. Dave and I were fortunate in that they were good and they cared for him. His last caregiver was a male in his fifties, and had been with us for 6 months. While Dave and I and the kids were visiting another of our children for the weekend, I got a call from the agency that the caregiver had died of a heart attack. (Even paid caregivers should take good care of themselves!)
Because I was never home with a caregiver present, I can't say how I would feel. However, if someone was watching Dave, I could always find some place to go! Even the public library, or a park, or a nice hotel lobby!!! PEACE, QUIET, and REST for you are the main thing. Don't stay home if you have someone. Read, walk, people watch, make your doctor/dentist appts - go to a movie - get a manicure. I can think of a lot to do to spoil myself! <grin>
Also, once you can have Hospice, I had them twice a week to start, then 3 times a week (Mon, Wed, Fri), then Monday through Friday. I had a male who was very good with Dave and showered him, shaved him, brushed his teeth, changed his bedding, etc.
There is help out there but you have to keep looking until you find someone who fits you for a price you can afford. It can be very frustrating. Training new caregivers to do it your way takes time, and if they aren't willing to, tell the agency. That agency that LFL has should be working to improve their staff. That owner does not seem to care and that is a shame!!! I feel for you!
Like Briegull had Andrew, I had my grandson (19) (his name is Andrew too!) for two years before having to hire an agency and that was the best! Of course, two years out of a teenagers life is enough! (By the way, he now has a precious little girl who will be one in a month and a baby due in September!)<grin>
I don’t know anyone who wants strangers in their homes. I certainly didn’t. But years ago, I watched a close family member almost kill herself taking care of her demented husband because she stubbornly refused to have anyone “in the house.” I think the key question is, “Why did you hire the aide in the first place?” If you needed an aide then, you probably still need an aide now.
I hired an aide on my own almost three years ago. (Got her name from the Senior Center.) She was a companion to my husband (who needed constant supervision), did minor personal care tasks, light housework, grocery shopping, and prepared meals. She was a very good fit with our family.
We also had aides through agencies and that did not work out as well, at least at first. The first agency sent aides who were inexperienced, unreliable and unsupervised. After a couple of months, I found out which agencies in our area were the best and switched to one of those. The second agency was far superior. They tried to send out the same aide each week and actually supervised the aides and checked with me to see that I was satisfied.
This business of supplying aides is a fast-growing (and probably profitable) one and the agencies vary greatly in quality. Some agencies seem to be little more than payroll services, whereas others actually train and supervise their aides. Even with the best aides, though, your life is going to be disrupted. My view was that if the aide made my life easier, it was worth the disruption.
I could not have kept my husband home all that time without help. Even with the aides, things came to a point that I could no longer take care of him. He was admitted to a LTC facility last week, so I have no aides anymore. It’s wonderful to have my house back and not to have to deal with outsiders. I love the quiet and the privacy. But if I had been able to swing it financially, I would have put up with aides 24/7 just to have him here with me.
This is vey upsetting. I am having an aide in the house for the first time tomorrow. She will be here very Thursday from 10-2. And I will add more days as DH adjusts. I am not so sure now. But I so need a break! I have to try.
Jackie, just remember YOU control the situation and have to take charge (I know, just one more thing to do and manage)but you can absolutely do this and it WILL work for you.
Some advice from a spouse who learned the hard way. Did you discuss your requirements with the aide/agency before you hired them? I seem to recall you are hiring people recommended to you but privately...is that correct? If so, make up a list and schedule of duties you want them to perform while they are in your home. Ideally this should have happened before you hired them but if it didn't then go over your list of expectations/requirements and negotiate what can/cannot be done. I would also tell them what is or is not acceptable, such as telephone calls/text messages while they are working for you. I didn't have a problem with this issue when I had aides for a few hours a day, it became a problem when the aides were staying overnight for 3 or more days.
A few things to watch for...limited if any cell phone/smart phone use while caring for your DH, no use of home telephone for any calls, request permission for time not with your spouse (bathroom breaks, whatever), if using the tv, the programs are what your husband likes, not what THEY like (I had 2 female aides that took control of TV and watched exclusively what they wanted, not what DH was interested in). I now give every new aide a list of expected services, meal plan for DH if they are preparing meals, schedule for each day including meals, activities. And I expect a verbal report at the end of their shift...how meals went, did he eat, did he speak with you, what if any activities did you do with him and how did he interact, how many bathroom breaks and was he continent, etc. No matter how good they are, they need to know you care about the care your spouse is getting and you're keeping tabs on the services they provide. If there's an issue, it's good to consult them as "professionals" on how to solve the issues. They may have great suggestions you haven't considered and they like being recognized as professional caregivers instead of "hired help".
LFL I did go with an agency. The private care that a friend referred did not feel right. I have had two meetings with the caregiver and a rep from the agency. My DH met both of them. They did feel right when meeting with them and seeing them interact with DH. I will be here the first two times. I will stay out of the way and do something's I need to get done here. Then on the third visit I will get out and find some time to myself.
I did discuss his routine and eating habits. I am very nervous, but mainly how he will do. I will take your suggestions and ask for daily reports. DH does not watch TV during the day. I am hoping that they can take him for walks and get him to do other things beside wondering around the yard picking up one leaf at a time. They are to interact with him with music also. He loves music and has a huge collection of. CD. I am hoping he will feel special and enjoy their visits. I have told him they are coming because of the insurance and my health.
I am going to type up an outline of what I would like for them to do with him, including his lunch schedule and preference. If they do not do what I think they should, I will find someone else. I really need for him to gt use to others being around. Hopefully this will work. Then maybe a trip soon with my sisters for some respite. It will be nice to not worry what family members are up to with him. I am also informing them if anyone shows up at the house while I am gone to call me immediately. I have not let his mom know I am doing this. She is a thorn in my side. I let the agency know this. So keep your fingers crossed. Will let you know tomorrow how it goes.
I hadn't even thought of aides until a neighbor suggester a man from the Philippines she knew who did such work. He was wonderful and actually taught me a lot about caregiving for DH. Eventually, tho, I had to let him go because DH became violent and didn't want a man in the house. I then had a woman from Belize who was equally good and DH liked her. Neither came from an agency. They were mostly here for a few hours in the morning, maybe M-F, did the shopping for me, made his b'fast, showered him, light cooking, laundry, whatever, altho the man liked to cook and I ate things I'd never had before and they were good. The few times I tried agencies, I had bad luck - you don't need the details, whatever you can imagine. I don't have a lot of fancy things around someone would steal. No silver, no expensive jewelry or knick-knacks, so I never worried about that. Both were from families from P.I. or Belize where many people do such work.
At one time I also called the Senior Center and a man there came over a couple days a week just to take DH to the park or for a ride, whatever, and sometimes they just did 'man' talk in the garage with DH's tools, etc. That was also good. I never worried about having 'strangers' in the house. If anything had ever happened to either one of us, I'm sure the 'strangers' would be the first ones the police questioned. I know of CG-ers who have robbed people blind, but that seems to be when the patient is all alone in the house and no one is looking out for him.
Also had women from Belize who cared for my sister for 3 yrs, she had vascular dementia, they were also excellent but her son kept close tabs on everything. I live in a big city, there are more options (and still lots of problems), but I'd go for someone from P.I. or Belize again any day.
Hi Betty, I must be having a brain fart...where is PI? Pacific Islands? I'm not sure where you are but in the Northeast aides are generally from Caribbean or African countries. Very few from Central America or somewhere else.
Jackie, my prayers are with you both and I know everything will go well tomorrow for both of you. It's funny DH never really complained about having an aide (he was in psych hospitals for 3 months before home) so we never had that challenge. But we had many, many others. Just remember you are in charge and are paying for a service, so I encourage you to get the type and quality of care you're paying for. You don't have to be a bitch but having clear roles/responsibilities outlined in advance and a report every day will help support you in the care your husband is receiving.
jackie, If a rep from the agency visited, as well as the aide, it sounds like you are dealing with a very professionally run agency, perhaps similar to the second agency we dealt with. We had some very good aides from that agency and were very satisfied. There are a lot of good people out there.
LFL, I think Betty meant Phillipine Islands. The best aide we ever had (who was from the second agency we dealt with) was a Filipino man. My husband just loved him and he saw exactly what needed to be done before I even asked.
LFL-- P.I. is Philippine Islands and I'm on the west coast, so there are a lot of people here from there and Belize. Belize borders Mexico. But that is interesting that those of you on the east coast get more people from the Caribbean or Africa. Altho I've spent a lot of time on the east coast, it's easy to forget just how big the US is.
Well, she is here. I don't know why I am so nervous. I showed her around and gave her a typed up sheet of contacts and what I expect. She has visited him with the representative from the service and he said that they were nice people. So keep fingers crossed. Really nervous what he will say when she leaves later. She is here for 4 hours. I know it will get easier. But it feels strange.
Jackie please don't digress. you need the respite and will grow to cherish those times away from caregiving. just be positive and matter of fact that its something that's non negociable with your own health issues. some things we have to do for ourselves. I waited YEARS before finally coming to the conclusion as so many have stated here that I couldn't make it without some relief. for me now its been about 5years and its a blessing to have someone to count on to get out. you will adjust and he will as well. any new situation will make for nerves but just try to remember you must do this or you will burn out very quickly. divvi
Jackie, stay strong...it will be okay for both of you. You need the respite in order to give your husband good care.
OT: The best nurse I ever had when hospitalized was from the Phillippines; I only wish there were more aides from the Phillippines in our area. Actually there have been none in the 6 years we've had aides. Jamaica, Ghana, Uganda, Nigeria - even in the ALFs and nursing homes.
Now that my husband is in a nursing home, I somewhat miss the aides two or three times a week. The one we had for longest still comes once a week to clean and also takes my husband's 103 year old aunt (who lives in a different nursing home) out for lunch. I trusted both of them (also I don't have much in the house of obvious value) and my husband did have a separate bedroom and bathroom so they weren't too much in my space. The one who was good early on was somewhat less good as my husband became more impaired. The first one took more of a friend role, though she also took responsibility for figuring out what needed to be done around the house. He was more comfortable with the second one helping him with his shower (both women).
Everything went great. I started doing something he around the house so he wouldn't ask questions. But the only thing he asked was how much it cost. He hasn't asked about money or handled it for ever. I do not know where that came from. I told him that the insurance paid for it. That she was here to help me and give him someone else to talk to and to help him with his condition. He was happy with that. I am sure next week will be different. But hope he does as well each time. It was a relief. I ran a few errands and was gone about an hour. So next week I will make a lunch date with my sister and shop. I am pretty excited!
Jan, Re-reading what you wrote initially, it looks like there are 2 problems - the unsatisfactory aides and the overall lack of privacy, which would be an issue no matter how good the aides are.
It sounds like things are backwards – instead of the aides’ accommodating your schedule, you are accommodating their schedules. Do you think the changes in your household (smaller house, husband in bed many days) might warrant re-examining the schedule for aides? LFL suggested asking a geriatric care manager if they know of any good aides looking for work. If you can do it, why don’t you think about hire a geriatric care manager just to take a fresh look at the aide situation and make suggestions?
Although many geriatric care managers provide constant supervision of care, some of them will agree to work on an one-time basis. I hired a geriatric care manger to give me advice about a specific situation and it was well worth it. She really knew the territory, including which agencies were good. She also knew of some aides who were reliable and available for private work.