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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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this is still Lynette - wasn't done w/ my post yet. as I was saying the bedsores developed suddenly, but with the enriched hospice care - she is getting better - they say, and want to re-evaluate her soon. If they want to release her - it may only give me another week or two to get her room all ready. I have read where many hospice patients thrive w/ the excellent care at hospice, then begin to decline once they are released. Any one been there before? Any suggestions?
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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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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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That is a good idea with the inflatable shampoo bowl, but my mom can't lay flat on her back because of some past injuries, thus the need for the adjustable bed. If she could, the bowl would definitely be easier! Thank you for the suggestion though -- a good one to pass on,
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If you youtube Haircuts on Wheels tips: How to wash hair in bed with a blow-up tub it will show you how
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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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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 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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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 can really relate to your situation, Lynette. I moved from my home in California in 2010 so I could be caregiver for my parents - who were then in their late 80's. My goal was that neither would ever have to go to a nursing home. My mom is almost 91 and her condition has been rapidly declining the past few months, although she's rallying a bit now. Her doctor recently ordered home hospice for her and it's been a Godsend. Adjusting to living with my parents again was very hard for me - I even had to get therapy for a while, but I don't regret it at all. These days together with my folks have been magical. My dad and I have become close for the first time in our lives because of this. Sadly, he's been in rehab for a few months - he got a UTI that left him unable to stand or walk. I wanted him to go to rehab principally for the therapy, which he could not get at home, but I hate his being there and, now that he's doing better, I hope to get him home before the end of the month. Anyway, I guess what I wanted to say is that it won't be easy (but you already know that) but you will never, never regret it. And, believe me, home hospice is really a wonderful thing (at least from my experience).
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Thanks for all your thoughtful answers... How I wish that my Ma could understand what was being said to her - maybe she does a little, but cannot speak anymore, other than a sentence once in a while. The Lord blessed me with wonderful parents, I grew up in the "Happy Days" era, and still miss my Dad, who died of lung cancer in 1998, terribly. After he passed, Ma lived 11 years on her own until I saw that dementia was starting to set in. She finally agreed to come live with us, but really after Dad passed, she spent more time at our house than hers anyway - we both took his death extremely hard, and I often think the intense grief she had, contibuted to the dementia.. But for a long time - I had her here, and we shopped together, cooked together, and I enjoyed having her here - even though she could be a little stinker when she didn't get her way.

She can't walk anymore, and even though I have been caring for her bedridden state by myself for the last 2 years - I am a little scared to have her here again - knowing that the staff so expertly handled her, and gave her such good care. I need to see & learn exactly what they have done, and how they do it, as I was never given any training - just flew by the seat of my pants - so to speak. I know that I can benefit from learning from them. Only God knows how much time she has left, and I also give you all credit, who have enjoyed caring for your parents, and appreciate the time you have left with them. It's such a difficult time, because - being human - we get tired or frustrated, but also know that once they're gone - that's it - until we are hopefully re-united with them on the other side. God bless & help us all - we all need Him - that's for sure.
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Hospice at home is great here. You get an aide and a nurse checks in a few times a week. Medicare pays for everything. Hospice sets up everything concrning hospital bed, oxygen, commode etc.
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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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Hospice can assist with obtaining an alternating air flow mattress which will help with the sores, they can also provide dressings and teach you how to care for them. They can look (and may be) really bad but you can do it. You will have Hospice staff in and out to assist. Enjoy your time together, I commend you for wanting to care for her. It can be challenging and frustrating but every minute counts. Many things can cause the sores to develop, keep her clean and dry, follow protocol set up by Hospice and keep her comfortable. Good luck.
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My husband is in the wheelchair all the time except for the couch or bed--I found that washing his hair with him bent over the toilet was perfect for me and him
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I find that ethic groups such as Chinese, Japanese and Spanish, take care of their aging parents without a second thought it seems. I read the articles such as this and see that most children take over this responsibility when their parents needs them. Remember, once you were a child and your parents/parent was there for you. The time eventually comes around when the roles are somewhat reversed and the child become the parent/caregiver. I hope that no matter who the caregiver is they realize that they need to respect the elderly person they are now taking care of whether it be a family member or a stranger in a nursing home setting. After all, we will all be in their position if we live long enough. I enjoy reading your stories about the Children now taking care of the Parent and doing it with love and understanding.
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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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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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JoAnn29: Do you bend over by bending your legs or back? Bending your legs reduces the strain on you back.
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When helping Mom in the toilet I'm lucky I can get over her back since I'm 5ft tall. The bathroom is just a little bigger than a stall. Not much room to move. I have a slight sway in my back and I think that is my problem. I lift very little since I have my DH. When I do lift I have to hear him say, LEGS.😊
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JoAnn29 --- My mom is shorter than I am and heavier, so I do have to bend over and put my wrists, not my hands, under her armpits, and lift with my legs bent as you said. I've been doing it for 3 years now and I haven't hurt my back yet. I also always have her wheelchair at a slight angle to where she is -- bed, chair or commode -- so I can lift and just pivot her over. Makes it much easier.
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There are standing aids that you can get that will alleviate a lot of that strain but it does depend on whether they can bear their own weight
Firstly chairs that have uplifts either built in or standalone lift ups that you can put in any chair so that the actual lift to stand is minimised,
Secondly a turntable device nopw I cant find them in the USA from over here in UK but it is essential a turntable (as in the sort you find on a record deck) but much sturdier and built to take the weight of an adult. That way you are on support mode only and the turntable will turn them without fear of them twisting their legs and hence falling. I have only found one - am I sad or what doing research on USA sites!!!) Romedic TurnTable Patient Turner.
Rehabmart also have sling and supports that will reduce strain on you and I am not sure whether there is a place you can hire one from but if not it might be worth thinking about starting a lending library of disability equipment through your local community centre or church or even make it a local school project.

Hope that helps you xxx
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JudeAH53 thank you for your suggestions. Ma is now bedridden, but I would love to use something to help her stand again - but maybe that is something that will not happen, given her condition. I have thought of a hoyer lift. We'll see how she does when she comes home - and I will ask the nurses their opinion. Even if we were able to get her into a wheelchair & take her outside onto the deck in this beautiful weather - would be so nice. It's so difficult to see her in the condition she's in - especially with the dementia.
Thanks for your caring - xxx to you too! BTW - congratulations to you all in the UK on the birth of your beautiful little Princess Charlotte Elizabeth Diana. What a lovely name - so appropriate to honor members of the family, especially Diana. We loved her here in the states. We're big royal fans over here, and think that Kate & William are doing a wonderful job representing the royal family. Would like to hear your comments on the royal birth!
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I'm not a strong person, no upper body strength ever.
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Ah sorry if the person is bedridden then hoists are pretty much the only way to go. Yes I think most of us in the UK are DLEIGHTED with the name having Diana in it. My mother isn't in fact she furious. Now given that it was Charlie boy who was the first adulterer in that marriage my mum had the audacity to say well yes but men can ...women should know better! Hm so men can .....with what gender may I ask if women should know better? GArage scream coming on I feel - Its polling day here (election time - now tonight is one night I will stay up all night for me I just love elections - mind you in the states you do all the razamatazz too love it xxxx
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DELIGHTED ^ grrr I cannot type
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