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They want to release Ma from hospice after a month, saying she's not dying. spoke w/ her Dr who said he will approve at-home hospice for her, but he still thinks she's on her way out. I want her home w/ me - so don't even suggest a nursing home - I don't trust them, and do not want them delving into our finances even tho Ma has a life estate w/ our home. The main problem was w/ her bedsores which deleolved suddenly

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Hi Lynette good post btw. I think all of us have had times when loved ones have been in and out of some sort of care other than ours. Older people dont handle any change well so a decline for a short period is quite normal. I say this but I have a dear friend who has been a care home manager for many many years and she says that if their time is near it can hasten it - I don't know how else to put that so if it sounded crass it wasn't meant to.

When my mum came home (and up until that time she had been living a near normal life) I had to rearrange a room that she could effectively live in. Carpets weren't ideal I would have preferred hard floors but not an option in the time allotted. So to conserve my energy (and in the time given) I hired a contractor to deep clean the room. I brought all her favourite ornaments and pictures within her eyelevel so she could see them all and put up new curtains and got her new bedding (making sure it was as similar to the old as possible (not too much change remember)

We werent sure whether mum had Lewy body dementia so everything was plain except for a few scatter cushions that I could recover if the need arose. I bought a second hand dressing screen and recover it so Mumm had dignity when using the commode and I bought a plastic square to go under it. I have a trolley next to her commode with absolutely everything I could need on it and close to hand. Vinyl gloves are critical to good skin care hun.

I would ask the hospice to show you what they do and how often they do it so you can replicate that at home. You may also be able to hire a ripple mattress if thats what they use in the hospice. Ask them they will help you and if they dont ask the manager in writing - they will be obliged t help then but in my experience hospices are fabulously managed and it would be rare for them not to support you. Good luck and remember there is no place like home and if your mum does fail to thrive it will not be your fault
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Hi Lynette -- My mom was living in an independent living center for 9 years and then fell in her bathroom and spent several days in the hospital - nothing broken though. She slept so much when she was released (I stayed the whole time with her) and she said she knew she couldn't stay by herself anymore. She was labeled failure to thrive by her doctor and hospice was called in. I made the decision to have her last days being cared for by me and my husband. We have a very small house and one small bedroom on the main floor so I fixed that up for her, got a commode and hospital bed from Medicare and brought a lot of her loved items home from her apartment. Hospice was wonderful, but after a month, they said she didn't need them anymore because she wasn't on the verge of dying. She was 95 at the time and now she is almost 98! Being cared for at home with a consistent routine is very hard for the caregiver, but beneficial for the person receiving the care! Her dementia is getting worse, but it helps to have someone remind them all the time -- I have a dry erase board by her chair with what the new day is going to bring and the date on it. It helps my sanity too! She's also in a wheelchair all the time so I have had to learn how to lift correctly so my body doesn't get injured. A lot for you to learn, but so worth it! I also use the disposable wipes instead of a washcloth to clean her after using the commode and it has been a lifesaver -- they're only $2.75 for a big package - and moistened with an aloe solution so its very gentle on the skin. I have never had any problems with skin breakdown using these. She hasn't had any bedsores and I'm thankful for that. And as the above reader suggested, I also have a a plastic tier shelf on wheels with everything I need in her room, because I also have to bathe her while she is sitting on the commode(wheelchair doesn't fit in the bathroom). So its stocked with bathing supplies too. I wash her hair in the dining room with a pan of water on the table, wet her hair with a washcloth, shampoo, and then use a washcloth and water over and over till all the shampoo is out. We caregivers do what we gotta do with what we have to make it work. I found a small recliner that I also put in her bedroom so she could take her nap in it instead of using the bed. A lot can fit in a small room if you arrange it right. Good luck and many blessings on this new journey -- you life will definitely be changed but you will have the satisfaction of knowing you did your best for your mom.
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I brought my Mom to live with me three years ago following a fall. I have always been very close to my Mom so I thought it would be very easy to make the transition. I was surprised at how difficult things got at times. I became frustrated followed by bouts of guilt. I also decorated her new room with things from her home and did many of the same things mentioned here. Please remember that at times you will be frustrated, and tired. I try to remember that she is probably sad and frustrated at having to leave her home and stay at my house. Because she is not mobile I am vigilant about bedsores and keep that area clean and moisturized at all times. I wish you all the luck in the world and just remember that you are not alone in this venture. There are many many of us out in the world caring for our aging parents and experiencing the same challenges as you. This is a wonderful site for gathering information and learning that you are not the only one.
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Hi Lynette. I'm so happy to hear that you are caring for your Mom in your home, rather than have her spend her last days in a nursing home. I thought the two helpful answers you received were great. I brought my Mom from an Independent Living complex to my home when her memory was fading to a point that I felt she couldn't safely remain living on her own. She really wanted to come live with us anyway. She felt unsafe herself. I was fortunate to have a small suite (bedroom, bathroom, living room) for her. We put all of her favorite furniture and art in her space. Her kitty could be with her, as well. She was part of our family, and had all meals with us, and she went everywhere with me, like my sweet little kid, really. She died 10 months ago, went downhill quite rapidly, surprising me, and I was unprepared. I miss her every single day, and am still grieving. I want to say that in my opinion you are making the right decision, and you won't regret it, because when she is gone, you will be so thankful that you were there for her, and saw her through to the end. The advice from Jude and Joy was good. Change is hard, and consistency is important. Best of luck and God bless you as you go through this with your Mom.
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I dont use one either Jo my mum uses a perching stool which tilts nicely so that she can actually put her head over the kitchen sink
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I give you two a lot of credit. I physically couldn't do what you do. Just bending over to help clean Mom in the toilet hurts my lower back. I can help her up with her help. If she was a dead weight I wouldn't be able to. Just don't have the strength. My DH helps but there are times he can't. I'm afraid there will come a time when she will need to go into a facility because she will be too much for me to handle. I'm it.
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I would also suggest making sure (eventually) you have someone who can cover the night shift for you, so you can get uninterrupted sleep. Nobody can be on duty 24/7/365 without suffering some effects.

I send you wishes for all the best. Caring for my mother at my home is simply not an option, but I congratulate anyone who can make it work. Don't allow yourself to feel guilt because you have not done anything immoral or illegal by doing your best!

Where my mom is, they have a schedule to keep her moving to avoid skin compromise & breakdown. They fill out an observation report many times a day for that. There's pressure sores and also damage that can happen due to friction, sliding on sheets, slipping down in a chair, etc. Might not be a bad idea to invest in a sheep's fleece for mom to sit on (under protective covering) to aid in that. Learning to transfer her into different positions will be very important to her and your back.
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Happy thats a great ideology but not if you were in an abusive dysfunctional family. It's difficult to respect someone who showed you no love nop care no empathy who wasnt there for you when you needed them most. Im not saying that for me although some of it applies, but for all those who are left feeling guilty that they dont want to care for someone who treated them so badly when they were vulnerable .
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Ah now you dont have to use the table route for washing hair you can but one that you use while they are laying down its an inflatable hair shampoo bowl let me find the correct name for you - you can buy them on amazon quite cheaply. Rihgt on the US amazon it is called Ableware 764302000 Easy Shampoo Basin, White
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Kudos to you - if you can help your mom at home and she's happy there, then that's the best thing for her I'm sure. I hate the fact that my mother died in a hospital instead of the home she loved. I lived with her (and my father) for most of the last 3 years of her life, and I did what I could for them, but unfortunately she passed in a hospital while I was away, and I know she would have preferred being at home.

I don’t have any specific advice. I just wanted to say good luck, and wish you well. It will be hard, but in the end you'll be a better person for it (practicing patience and giving care can make you a more patient and caring person), and your mother will most likely be happier.

PS) Just make sure your mother is where SHE wants to be, where SHE is happiest. For example, I know my mother would have preferred to be home if she could have been, but her health problems in her final weeks could not be managed at home. But my mother-in-law currently lives in a senior living facility, in a private room, special for those with dementia, and she’s very happy there. It all depends on what your mother wants/prefers, what her health issues are, and what type of facility is available. Remember, it should not be what you want, it should be what SHE wants, what makes her happy. I know that sounds simple but some people loose sight of that when they get caught up in emotional issues.
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