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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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I imagine you went to a lot of trouble to find male aides but I've been told that a lot of men are more comfortable having a woman assist with bathing and toileting.
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JuliaRose Oct 2018
Thanks. I wish that was the case with my husband. But, due to religious and moral reasons he is absolutely against spending time alone in the house with an unrelated woman. Never in a thousand years would he allow a woman to wash him. We tried having female aides last year because of a shortage of male aides at the agency we had been assigned by the VA, and it was a terrible time with lots of fights between us. I much preferred the company of women. But it wasn’t worth the disharmony in the house.

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.
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Great to hear about the new young aide. If he is working out well and interested in the work, who cares about his orientation.

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.
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Thank you all for your responses! Yesterday, we met the second fellow who will be coming each week. He’s young (22), talkative, and eager to get involved and learn. I’m much more comfortable with him than the temporary 55 year old who came last week! Age matters to me because I’m quite young (36). Having an older man around made me uncomfortable. The young man was very respectful to me too, and I didn’t feel like he would crush on me. (He might be gay? Not saying that I’m so irresistible that if doesn’t... lol! )

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!)
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shad250 Oct 2018
You're probably right, the aide is probably gay
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Thank you for your input gdaughter, I appreciate that so much.
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Have the Aide transfer him to go sit outside with him...if it’s a nice day...do you have a nearby park? My mother’s aide takes her to the park to sit when it’s nice out for a couple of hours....or maybe you feel more comfortable with a strong woman Aide? They can do transfers too..some can’t. Or maybe you just need Aide for a few hours? Anyway, you can find places to go to get away for the day just yourself or with friends?
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JuliaRose Oct 2018
That is a great idea to have the aide take my husband outside for a while.

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.
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I think sometimes this is a situation of “be careful what you wish for”. I often wish for a home health aide too, especially when my back spasms when I’m trying to push bedridden husband over to change him or trying to pull, heavy, wet, twisted bedsheets out of my too-deep washer. But having someone in my house would be a real challenge. I totally understand how you feel. Maybe as time goes on, you can work out a schedule for the aides to be there less and only when you really need them.
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Hello My Sweet Friend. It is very difficult having some stranger in your house. I absolutely hate it, but I have no choice. Since I not only care for my husband, I also have to leave my house and go to care for my 90 year old mother and ill brother. So I must have someone in my home while I am gone. And it is hard to find my kitchen rearranged, things broken or missing, etc. However, the alternative is not a good one. The help is very necessary and I have to bite the bullet. I have gone through several caregivers until I have found a couple of people I can live with. And after a whole lot of training on how things are to be done with his care and the house, it is easier to overlook some things. The priority is my husband, and as long as he is well cared for, I can turn the other way on the small stuff. It is an exercise in patience and tolerance which helps build my character. It won't be forever. The loss of your privacy is a bitter pill to swallow. Try to find some way to keep at least one room in your home just for you and no one else. And when you are in that room, NOBODY is allowed. Maybe install an extra TV, a big comfy recliner to read to to nap. Try to find and arrange yourself your own niche that you can retreat to. And be sure to put away any valuables that can easily walk out the door. Not saying to expect it, but better safe than sorry.
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.
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JuliaRose Oct 2018
Thanks for your support, Dee. Yes, it is a journey. Good luck finding the right helpfor your situation.
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Having strangers in the home alters the "home feeling." There is no getting away from that. It's good to set boundaries in advance. That way, when you assert your boundaries, the caregivers know it's nothing personal you just need space. Try to carve a little space in your home where you can have privacy from the caregivers. You need to have a place where the caregivers can't go. Also let them know (in advance) that you may want to spend time alone with your husband. Ask them to bring a book or a laptop so that they have something to do during these times. Finally, it may feel uncomfortable because this person is the wrong caregiver for your home. p.s. I'm glad your husband and you are getting extra help.
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Lots of helpful suggestions and experiences to draw on here. I'm sure you will eventually settle into a rhythm although you will never find the situation entirely anxiety-free. I would not worry so much about finding ways to occupy the caregiver's time when he is not helping with transfers. He is there to be there to do what you can't be there to do all the time. Just think of what this freedom means to you and enjoy it. You must preserve your health and sanity and enjoy your life too. As for my experience with aides, I started getting in sporadic professional home health care for my mother 14 months ago and eventually transitioned to having a couple of regulars who cover Wednesday evenings and Saturdays so my husband and I can go out and do things. Unfortunately I also have to hire in random aides because I have appointments to get to, etc. I have witnessed a wide variety of aides come and go; many very positive, upbeat and proactive, and a minority who would rather look at their phones all day. Fortunately my mom is mentally sharp so she is able to report problems to me. There have been a few folks I have asked the agency not to send back and I always explain why. If you plan to be out while the caregiver is there, which you should do to enjoy some new-found freedom, consider having in-home surveillance cameras installed for peace of mind even though you really like the caregiver. (See if that's legal in your state first though.) Your caregiver may not be available one day, and then you'll have a stranger coming into your personal space again. Either that or photograph and document all of your valuables. And it goes without saying that in-home surveillance would help eliminate any dereliction of duty on the part of a home health aide when you are not home to see what's going on.
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Yes. No privacy. It gets worse as time goes on. Not to mention they don’t always show up when they say.
My door doesn’t close and no locks. Caregiver helpers and medical just come whenever they want
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skyelav Oct 2018
You would b a lot happier if you set boundaries with them. If you can't talk directly, start talking about those issues to the agency. We ALL have to learn to say, "no" and it can be difficult if you have relied on the good manners of others. Practice this with a friend or therapist or group.. DOn't be a doormat..
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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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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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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 2018
Julia's husband has the peritoneal dialysis, done by her up til now. She is wonderful!
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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 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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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 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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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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This caregiver is for YOU just as much as he is there for your husband.
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.
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I moved into my sister-in-law’s house last year to coordinate a month or two of hospice care and 24/7 caregivers. She was bedridden. The stay lasted 6 months. It became some of the best times for her. Gradually she allowed her care givers to do more for her and learned much about their lives. Do take care of yourself and let your husband work with the aides. One thing that really helped was a simple baby monitor. She had privacy when desired but care with a raised voice. It wasn’t perfect but it worked until her end of this life.
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The keyword is “light housekeeping.” They are caregivers, not maids. If you can get them to clean your house and take out the trash, appreciate them. My caregivers don’t do much with housekeeping, but look after my husband well, and that is the point. I wish they would do more, but hey, if they refuse to work with us, I am screwed. I work full time, so i cannot take off all the time.

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.
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anonymous782208 Oct 2018
ohhh......that is a troubling request on so many levels. First of all, no employer is allowed to ask an employee if they are gay. The VA is no exception. So, if the human resources person were to guess as to who is or isn't gay, it could cost them their job as it's highly unethical for them to do so, both in terms of making assumptions about an employee's sexuality and then also following through on such a request from a client.
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.
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I am very glad you have figured something out. When our home health aide came in for my father it took her a half hour to wash him up..but she clocked in for two hours...so she would just sit and eat cake and coffee for the rest of her stay.
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Julia rose, I myself, never got "used to it." The best I could do for myself was put a chair in my father in laws bedroom. It is so hard, I know. I am in my 11 year of caregiving. It takes up your whole life and freedom. Find a way to take back your bedroom for your future self because you are in this for the long haul. Best wishes, Candi
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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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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 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 am assuming that the living room is where your husband is. Why not set up your computer in your old room. Maybe a nice lounge chair. Then that will be your area. I am surprised they do laundry, dishes and clean bathrooms. Where I am from, if its not directly linked to the patient, then the aide doesn't do it. I had a friend that had an aide in during the day to care for her bedridden husband. She was upset that the aide didn't wash her dishes and clean. She was told that since there was a person in the household capable of doing these things the aide was not required to do it. Now if there was just the patient, then she could do these things. The aide did wash dishes the husband dirtied.
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JuliaRose Oct 2018
Hi JoAnn,

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.
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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 2018
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 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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But, if your husband requires the help for transfers, they need to be there most of the time, right? So, what are their duties as listed on the contract?

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.
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