How do I (as Caregiver) adjust to having a Home Health Aide around?

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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.

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First, since the living room is essentially your bedroom and office I would make it off limits to the caregivers, Set a comfy chair in the kitchen for them or if there is room they could sit with DH.
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.
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JuliaRose Oct 6, 2018
Thanks for the ideas! Me? Go for coffee?! Lol. It’s hard to adjust my thinking that I don’t have to be home all the time! (Only every 3 hours for peritoneal dialysis... sigh)

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.
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Please use this time for yourself and get out. Exercise, friends, the movies or look to your local senior center or community college for classes. Volunteering can be very rewarding. If you're not there, your husband will adjust more quickly. The caregiver can read to him, maybe play a simple game, or listen to music together. My husband likes to sing to music from our generation and I've found great music on the channel called Pandora.

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.
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Reply to VeggieG
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Trust me it's uncomfortable for the aides too. Having a separate area for the aides is a great start. Please see this as an opportunity to go out and do whatever it is you haven't been able to do before your husband became dependant . You mention the aides only needs to be there for transfers.Does this mean toileting ?diaper changes and bathing? Preparing meals and serving them? If transfers are necessary than it's likely he requires quite a bit of help.
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😊
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JuliaRose Oct 7, 2018
Thanks for your input. At this point, my husband transfers only a few times a day between wheelchair and bed. Sleeping most of the time. He will not allow the aide to assist in the bathroom, so that’s all on my shoulders.

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.
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I'm very glad you have this organised now, and I'm not surprised that it is quite an adjustment. I have a comparable situation about being in the house when my cleaner comes - I'm not lazy, I have a tricky back, which means that vacuuming, window cleaning etc can leave me in pain for days. I find ways to be in a different part of the house as Sharon moves through it, and I go out for a walk on the farm for part of the time. I'm getting used to it now, but at first it made me feel guilty and also seemed like a real invasion of my privacy. Being separate for meals seemed like the cruncher. If this is going to last for years, perhaps you could even think of possible mods to the house - eg enclosing a small verandah or balcony space so that you and the computer could be separate. Best wishes.
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I am having trouble adjusting to having care providers as well. I was also sleeping on the couch in the living room. I moved in with my Mom into her 1 bedroom mobile home months ago. I had had her with me in my senior apt townhouse for a year and a half prior to moving to Mom's little place. At the town house we were limited to a small area downstairs there... I was sleeping on the couch with her hospital bed in the living room....giving her showers in the kitchen ...Here at Mom's place the shower is so much better - The space is limited here about the same with the living room/ dining room and Mom's postage sized bedroom and shower. I got a cute second hand twin sized Jenny Lind bed and it just fit in a little cut out space in the living room. I sleep better. I made it easy to make, and it kind of looks like a day bed during the day... blends in with the farm style look we have. I would like it to be more private but it would make the space unbearably small so I just leave it open as part of the living room.
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.
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gdaughter Oct 9, 2018
Whoa! Refusing to cook liver...I kind of can relate to and in all my years in this business that has never come up, though cooking requests are secondary to house cleaning tasks in my position...however, bathroom cleaning is a challenge for older and disabled people due to physical exertion and challenges due to health issues. And that is just not okay that she doesn't do that. And I strongly suspect she knows damn well she's getting away with it. Clean bathrooms are essential in re to well-being/health, and you need to protect your own well-being as well. If it is possible to have her come one day less, or in hours she is not there I'd start looking for another person. Discreetly. And then when/if you find that person you can let this little love you have know that either she starts doing the bathroom, or she is history...because you may be a nice easy assignment for her. Or you could have the guts and be straight and direct without looking first to see if she "cleans up" her act. Tell her it's too hard for you and you can't go on doing it.
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I have had caregivers come to the house seven days a week for my parents who live with me. I like them and they do a good job, but my husband and I feel like we have no privacy. I dont think we can get used to this situation. We decided to expand our house so that my parents are comfortable and also that the caregivers have an area they can use. I try to make their environment more pleasant because they have a difficult job. I include them in family gatherings and consider them as part of the family. Sometimes I just want alone time away from things, but having a separate space for you would help. Remember to look at it from the caregiver's perspective as well. Good luck.
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gdaughter Oct 9, 2018
That's really great that you have the funds to expand the space...but not everyone will be able to do that.
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So good to hear from you and know you're getting some help! My Dad has Home Health and VA caregivers and while it was uncomfortable at first, I must admit, I've come to enjoy their company. They are so helpful and I've learned so much from them (men and women). I imagine that, given time, you'll become more comfortable too. Set boundaries - it's your home - but kindness and respect goes a long way to making this work. Bless you Julia Rose. You're a very positive and loving person - you just need some time. 💙
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JuliaRose Oct 6, 2018
Thanks!
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It's a blessing when caregivers get help; my MIL's aide was a godsend. And I know it took a while for my in-laws to adjust to having her around 8 hours a day, 5 days a week. I can understand how difficult an adjustment period this must be for you.

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!
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MargaretMcKen Oct 9, 2018
Julia's husband has the peritoneal dialysis, done by her up til now. She is wonderful!
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Having your back to someone sharing room/space with is very bad feng shui (sp?). It creates stress because you can't see who is coming...rearrange things:-)
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We just have a similar situation except that the help is a woman and we were able to get her to come in 4 hours in the morning and 4 hours in the evening. So in the morning she helps my Mom with Dad for hygiene, shower, making the beds, laundry and breakfast, it also allows my Mom to go to her water aerobics class without worry of leaving my Dad alone. Then, she leaves and comes back to help my Mom with dinner, walking the dog, get the mail fold laundry, take the trash out, even prepare dinner while my Mom can sit down with us or anyone else to visit before dinner. My Mom decides what dinner will be but she helps prepare it, often will sit with them for dinner and then she will help with getting my Dad ready for bed, clean up the dishes etc. It took a while to convince my parents to accept help, but now it has taken a portion of the burden off my Mom and that is great. Maybe you can split his shift. I know they prefer the 8 hours straight but it is not about what they want but what you need. I wish you luck in finding the right balance. it is not easy, but it can be done.
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.
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