How do I (as Caregiver) adjust to having a Home Health Aide around?
Over the last few weeks, we have had a major success - my husband has finally accepted help from (male) home health aids! WOOHOO! This has added a new element of freedom for me, and I'm grateful.
However... I'm not used to having someone else around for more than a few hours a day, especially a man. The aides (which are sent via a contract with the VA) can accept or decline the job, and I've learned they much prefer 8 hour or longer shifts. How do I adjust to having a man (55 yrs old) in my house for 8 hours or longer multiple times a week? I need some practical tips and encouragement here.
I do have a few tasks for them to do while they're here - laundry (but not my personal items), dishes, clean bathrooms, take out trash, etc. But then they sit in the living room, which doubles as my bedroom because I sleep on one of the couches and work station at the nearby desk. Yesterday, the fellow helped us go to a doctor's appointment, which was surprisingly nice. Then we settled back home, and I didn't know whether to make dinner (he refused lunch, saying he just ate), do a little computer work (with him sitting behind me) or what! I became so anxious. And, that was only a 4 hour day. What would I do during 8 hours?? Can I send him outside for a while? My husband does not require much attention except for transfers.
Thanks.
27 Answers
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I think that I would work on setting up an area where they would stay when not performing duties. It night involve rearranging your furniture or switching rooms, so you can have your own privacy. It would be uncomfortable for me too, but, it's something that you must have.
Then plan to be away as much as possible, with a caregiver there you don't need to be there too. When I had a 6 hour block of respite weekly I would go to the city to shop and have lunch but you could take in a movie, if you have a portable computer you could spend time working at the library, it might be nice just to go for a walk or hit the gym or meet a friend for coffee. You might even consider volunteering or a part time job.
I think I will empty out the open area next to the bathroom and make it comfortable for the aides. It’s near the kitchen, so close enough, but not right in my space.
The aides call it “light housekeeping” and it is mostly for my husband. They clean his handicap bathroom, empty his dialysis bags, cut up the boxes and take them out to the recycling. Dishes are both of ours. They wipe clean the other bathroom if it’s used to empty dialysis bags. But the one fellow is willing to help more, so he dusted a bit and vacuumed upstairs last week when I was out, which was fantastic. It hasn’t been vacuumed for many months. It has been very helpful.
I wouldn't ask aides to be a a cleaning service but if they don't mind light housekeeping to keep the home healthy for your husband then this is fine. Their duties end at caring for their patient.I used to work as an aide for a woman that thought I needed to cook and clean for her entire family including her children and their children when they came to visit as if I'm a live in maid. She expected me to move tables and sofas to clean under them,had me rearranging her grandchildren s toys.The agency told her this not my job and she got angry.Mutual respect is definitely necessary.
This being said you could join a book club,eat lunch with a friend,do whatever helps you decompress..This is an extremely long , difficult journey and you need to make sure you take care of YOU too😊
He and I can usually do things ourselves, but it’s nice to have an extra pair of hands for safety reasons. So, the aide really doesn’t have much to do other than be around “just in case.” I’m getting my husband (and me) used to me going out, so hopefully this will change and he will trust the aide more and more.
RE male caregivers, I have a suggestion but it may be difficult to accomplish. Ask for a gay caregiver, if you are ok with that. They aren’t interested in you, if that is what you are worried about. Your husband does not need to know the caregiver is gay.
Plus, it's a heavy burden on any agency to look for something that personal and specific. It's no better than asking for a specific race or religious belief.... which might better please an elderly patient, but which are essentially illegal for an agency to do.
I am sure there are things that you can have him do that you would not want to do yourself.
Is there another room that you can use for your office? If so ask if he can help you move a few things. I do not know if they are permitted to move furniture but you can ask.
And why are you sleeping in the living room? If that is the only space you have can you get some room dividers to separate the space so you can have some "ME" space. Even if you have to have your work space in the living room it is better to separate where you work from where you sleep I think you will find it more relaxing to sleep.
And if possible switch out one of the couches to a "Daybed" so you can have a proper mattress to sleep on. And when it is needed the Daybed can be extra seating when it is needed. But also sleeping on a couch demeans you and what you mean. You maybe put an unwanted guest, a spouse you are arguing with on a couch to sleep not a loved one. (I hope that makes sense)
But the caregiver...you will get used to it. Use the time he is there to get some things done for you, get your hair done, go to a movie, read a book, have lunch with friends.
If you don't have another room for your needs (and you need a bed), can your husband's bed be moved to the living room area and you set up your own space in the bedroom with a closed door? We did that for my mother and it worked out well.
The care givers are a challenge ...it takes time to feel comfortable enough to leave. I have
really struggled with this a lot. It seems like just more work having them come at all at times. I am disabled and it is very hard for me to do all this.
One of the better care givers so far has told me she would "rather not" clean the bathroom ...also refused to cook Mom's liver - which really threw me for a loop. Because she is very good and gentle and attentive with Mom... I can trust her with helping Mom exercise and get a shower, has nurses training- so I can leave and trust if Mom has a stroke or falls that she is in good hands...so the bathroom cleaning and liver issues - I have just put up with for now, I can at least get out. I have had a very very hard time getting anyone who is on time and dependable. Making a ROUTINE for Mom and writing down what she and I do and letting them have a copy of what we usually do hr by hr to follow is what I am working on... just to give them a better idea of what to do in general. I am working on that. I think I need to be more clear on what I am wanting them to do ... (and not do)-One was burdening Mom with personal dramas-That is something that was a total deal breaker for me. Mom was so stressed out worrying about the care givers problems.... I had to let her go....So-YES, Finding professional acting care providers who will show up on time and make Mom's life better .... I am in the thick of it - and it is so stressful having to start all over with a stranger.... I have just put up with things I probably shouldn't.....because I am really tired.
Mr. Aide and you also can develop a bond over caring for your husband. Just do it at the kitchen table. Little by little take more time for yourself. My FIL never did take that time for himself. And now that MIL is dead, he's lost and declining rapidly.
Do you have any hobbies?
Since you yourself are undergoing peritoneal dialysis every 3 hours, I suggest you slowly and gently get your husband used to having Mr. Aide help him in the bathroom. Does your husband have some sort of toileting schedule? Start by reminding him gently that Mr. Aide will *help you* toilet him. This will help lower any agitation he may experience because you will still be there. As your husband gets used to Mr. Aide, he should allow him to care for him in the bathroom.
As for your living room, it functions as your personal space. Is that where you do your peritoneal dialysis? Then it's also important to keep it as clean as possible for yourself. Get a folding screen or two and separate it from the rest of the house. I agree that making that space your own is important.
How about making your husband's bedroom more comfortable for Mr. Aide? Maybe a comfortable chair and end table? Get a television and radio in there? Good luck!
If you don't want him in the house send him to pick up prescriptions, groceries, dry cleaning etc. They are there to make your life easier. You should never feel out of place in your home. Remember, they work for you! Stand your ground.
My door doesn’t close and no locks. Caregiver helpers and medical just come whenever they want
As for sending them away for a while, that is something you will have to negotiate. Those who live farther away may not be amenable to the idea. And then, there are others who welcome the break in the day. Always put yourself in their shoes and see what would be workable for them and see if it works for you as well. Right now I am needing to find someone who can come in during the night to change my husband's depends, and turn him over to prevent bed sores. Short nighttime shifts are hard to procure. The thought of getting up from sleep to let them in just doesn't appeal to me.
Remember that this is a journey and that we have to adjust as the disease progresses and the needs are greater. But also remember that the journey will come to an end one day. So try to think positively every step of the way and learn and grow from the person you have in your home. I have made some great friends from a couple of my caregivers. I'm glad they were in my home. Blessings to you.
As for a female aide, my husband absolutely refuses to be alone with a woman. Religious and moral reasons. The agency only had women aides last year, and it was a disaster.
My husband doesn’t know what to think! He hasn’t had so much mental stimulation from a visitor in a long time. He hasn’t even said a word about the young man we spent 6 hours with yesterday.
We keep the house warm, and the aide clearly tends to get hot, so he naturally migrated to the kitchen where the AC is. By the winter, I predict he will settle into the room by the bathroom I’ve started to clean very nicely since the heat doesn’t work well there. (The rest of the house will be almost 80!)
If you can work out how to have lunch separately, or at least with your husband as well, it reduces the 'social' atmosphere between you and the aide.
The next step is how to get your husband to accept his help in the bathroom. Did you mean washing, or toileting, or both? If the aide sets up the bathroom, it might be a step in the right direction. People have talked about warming the room and the seat, putting out a towel close at hand, moistening a face washer with soap, and generally making the bathroom attractive. It might take the aide one step closer to involvement with your husband, which would take a load off your shoulders.
Best wishes.
The two young men coming regularly now are working out much better for my husband. And, I’m getting out of the house more, setting up a separate space for them to relax away from where I spend most of my time, and creating a private space for myself upstairs.