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My mom is on hospice care because she has declined physically and has dementia. Because I can only visit one week a month, should I look into paying someone to be an advocate for her to make sure she’s getting the best care and attention possible or is that needed? I believe she’s in a good place but the hospice bath person noticed while I was there last week, that my mom’s diaper was unusually wet, suggesting that she hadn’t been changed recently. She told me this is the first time she’s seen this with my mom. She was going to talk to the staff nurse about it and make a few suggestions regarding another issue. She gives her a bath twice a week and looks her over very well and makes notes of any concerns. Since my mom has hospice care, I wonder if this is enough to make sure she’s getting the care she needs. Or would it also be better to pay someone to come in and spend time with her weekly to see if she’s getting the care she needs? Is this done? I wish I didn’t live so far away, but I do my best checking in on her daily on an Echo Show when I’m not there so I can see her and talk to her. I also communicate weekly with the MC director. My mom gets lonely sometimes but doesn’t want to get out of bed and spend time with other residents. So wondering if someone who visits would also help with that.

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She might be getting excellent care, but something is itching at you. Give it some thought; you may have detected a problem you have not articulated to yourself yet. Establishing your own relationship with some staff members is an excellent idea, and treats are a way of doing this. I put a box of candy in the room, people would come by for a piece and visit for a while. Ask the head nurse or administrator whom you might call occasionally to know how Mom is doing. An outside visitor is an excellent idea; and a sensitive person will attune themself to your mother's personality. If there is a care agency with a good reputation in the area, call the staffing coordinator. Tell that person your concerns and ask how to pin down any problems. They may send someone a few times just to check things out and report back. Your brother is there weekly. What he is observing, or could observe at your request, could be helpful. Is there a problem there or lack of communication between you and him, is it something you might iron out where your Mom's care is concerned? He might need a clearer understanding of possible issues and how to look for them. He might be able to answer some of your questions, but isn't aware of what concerns you. Did your Mom attend church in the day? The local minister of that denomination might visit or send someone to address your worries. Ask around, even some of the people in your hometown will have dealt with similar situations and have ideas. Talk to the people around you, tell them your worries when they ask how you are doing. They will have suggestions and some of them will be helpful. Good luck.
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JoAnn29 Jul 2022
That did not happen with my Mom an avid Church goer and very involved. Ministers reasoning, he does do visits. None of those she worked with for years, at Church, did either.
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My mom is at a assisted living and she is in late stages of Parkinson's with dementia. She is on hospice . However, I have had to hire personal caretakers to come in and be with her . She really needs 24 hour care and is on a waiting list for skilled nursing. If you can afford to have extra help to come in its worth it. My mom is not as lonely, she does not sit wet in her depends and I know she is getting better care. I keep in touch and stop by 2 to 3 times a week. My mom has many UTI's and can't be wet and has started with sores from sitting all day.

Good luck!
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Lov2teach: Imho, your mother is receiving the care that she requires in addition to your Echo Show daily communication without any additional person(s) needed.
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I would call the facility every few days to speak with her nurse or Aid to see how she is doing. If Hospice is coming in, it’s likely that she does not have long to live. Keep the communication lines open with the facility. Send them treats, pizza, etc. weekly. You will get more information out of them and they will see to her needs more closely. You could get her a telephone in her room if you think she would answer it and make sense in conversation. If not, I wouldn’t get it. It would only cause you to worry.
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Get both - a patient advocate and a volunteer. They do different things. The volunteer can keep your mom company while the patient advocate will see that she is cared for physically, mentally, and emotionally. Where do you find a Board Certified Patient Advocate? There are several organizations out there who certify or license advocates. Please interview 3 and then make your decision. All have experience in different areas of care: health, legal, home safety, and financial are the biggest areas. Since you are dealing with health, you will need to explain what your goals are, and what your expectations are and any great experienced patient advocate will know exactly what to do and take it from there. You will wonder how you got along without her! Hope this helps.
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I agree with asking for a hospice volunteer visitor. The first 22 months my Mom was on hospice, they sent a wonderful gentleman 2 times a month. He would stay for about an hour, talk with Mom or read to her and then call or text me when he left. Between the weekly nurse, 2 times per week bath aide, and chaplain or social worker who switched off weeks, someone had eyes on her often. I was crushed when they graduated her off hospice. It was another 6 months before she went downhill enough to requalify and is back on hospice. Different company this time and they do not have the staffing to do 2 baths a week, nor do they have any volunteer visitors due to covid. Mom is 96 and in memory care over 5 years, has no idea where she is or who I am, hospice is such a blessing to her and for me. I think their services are sufficient for now.
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I did and it was the best thing I ever did! If you can find someone who is retired but needs a few extra dollars, that would be great. Having eyes on my dad in case he fell or tried to climb up on the roof (yes, he did!) was invaluable!
If you want it to be for a while, make up an agreement and both sign in front of witnesses. That way everyone is aware of what is expected.
All I needed was someone to come in and drink coffee, talk to my sociable dad, and let him show her his garden. Later on, I needed her for longer hours and she became a lifelong friend.
But then, i did that in the mod-stages. Medicare will pay for a certain amount of hours a week. Check into that.
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IN DISAGREE THAT ‘A BRIEF TOO WET ONCE IN A WHILE IS NOT A LIFE THREATENING SITUATION IMO’, FOR IT ACTUALLY IS FOR A PERSON SUCH AS MY MOTHER, PRONE TO FREQUENT UTI’S. TOO-WET BRIEFS MAKE A UTI SITUATION ‘RIPE FOR DISASTER’. UTI’S CAN REND A PERSON SEPTIC IF UNTENDED.
TOO-WET BRIEFS’ CANNOT AND SHOULD NOT BE ALLOWED!
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I did home hospice with my Mom who had stage 4 bladder cancer to ensure that she recite best care (mine) with used visiting to check on my work 2X a week. They were available for more visits if I ever felt that I needed more.
Prisma Health home hospice in SC was amazing. My mom was diagnosed on 1/17/22 and I lost her on 1/29/22. Although, I miss her more than I could ever tell anyone I'm thankful that she did not suffer more than the few aches and her lost of appetite prior to the diagnosis. God bless you and yours. My prayer is that you receive any additional help that you may feel you need because a peace of mind is everything.
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Lov2teach Jul 2022
So sorry for your loss.
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Why don't you ask for the hospice for a volunteer to visit once or twice a week. They try to match someone with the same interests and it usually turns out great.
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I have a wonderful woman who sees my mom 4 hours a day 3 times a week. 1-5 pm They bonded and mom likes her a lot. My mom is a loner and introvert. They watch tv, take walks, talk, she fixes moms hair and she generally keeps mom company. It has been a blessing. I found her through another woman who does private duty at the same facility. She is also very encouraging to mom. Loneliness is so sad. I talk to mom on Alexa show daily but this has been nice for mom because she has someone with her and the rest of the time she gets to rest which she wants to do.
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I have found it is important to have an advocate to make sure a nursing home patient is being cared for properly. I visit my brother daily and have found clothes missing, him naked, needing a new brief, medicine changes, so I think it is important the nursing home sees someone is watching! Why not try it-she may grow to really like this person.
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I think that if I had a total stranger next to me all day long it would be exhausting. If your brother is local to your mom, would he be able to add in 1 more visit a week? Or, offer to pay your brother to visit more since you're willing to pay a total stranger who your mom doesn't care about? Just a thought.
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I would think with Hospice you really do not need another.
You can request a Volunteer visit mom 1 time a week.
A Volunteer is trained and if they notice anything out of the ordinary they will put that in their notes and it will be discussed during the Team meetings. Volunteers will note things like weight loss, increased coughing, disinterest, they will also make note if the person they are visiting discusses something that would be of interest to the Team. Anything critical is brought to the attention of a staff member immediately.
You could also request a visit from the Music therapist if mom likes music.
You can also request that the Social Worker visit more often. Typically a visit from the Social Worker would be 1 time a month.
A visit from the Chaplain would also be someone to keep an eye on mom for you.
All these people are trained to observe and pass on information that the Nurse, Doctor, CNA would need to be aware of.
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Someone visiting and sitting with your mom daily would obviously help her with loneliness, if she's agreeable to it. But if she's a loner like you've been saying in your posts, she may not WANT someone sitting with her every day. When my mother was on hospice, it seemed to me that there was a parade of people to see her every day. Literally. The chaplain, the social worker, the RN, the CNA who bathed her 2x a week, then there were the regular caregivers at the Memory Care who tended to her every need (she was not bedridden till the last week of her life), the family (me) who went to see her weekly, the phone calls, etc etc. So if your mother were truly 'lonely', I would think she'd ask to get out of bed and go into the activity room to see other people interacting. Don't let your unfounded guilt drive you to do things you think are 'necessary' when they may not be, nor may they even be WANTED.

Having hospice and the facility staff looking after your mother should be enough w/o the need for an extra caregiver to be with her, loneliness aside. If her brief is a bit too wet once in a while, oh well. That's not a life threatening situation, imo, and nothing to get too worked up about. If she's uncomfortable or needs/wants something, I imagine she herself could push the call button and ask.

I think you do quite a bit for your mom by calling her daily on Echo Show, checking in with the MC director and your brother who visits weekly. What more can be done, really, for a woman who's on hospice already? You can always ask her if she'd enjoy having a companion sit with her for a few hours every day, and see what she says.

Good luck!
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