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When I arrive in the mornings, they usually have just put on a fresh diaper, though sometimes they don't even put it on properly and one side is not covering one butt check. His sheets are often wet and there is evidence that he has dug out the wet parts of his previous diaper because little parts of it are on him and in the bed and on the floor. Whenever I arrive earlier than they expect, they rush in to change him while I wait at the door. The overnight staff lie and say that they "check" every two hours and change more than once but it just isn't true. The day staff know that the overnight staff are not changing any of the residents except for once in the morning. My Dad often sleeps late into the day and it makes me wonder if he has stayed awake a lot of the night uncomfortable and wet. I don't know what to do. I see him in the morning and again at night and when I leave at 7pm at night I put a high-absorbency diaper on him (that we bought for him) to try to maximize the time he stays dry. Still...nearly 10 hours is too long to be in a diaper and my research says that 4 hours is the max (provided no stool). We live in a small town so our options are slim on other facilities. My mom can't drive long distances and she spends the middle part of every day with him. I feel that overnight staff won't change because there is no accountability or checking in on them to see if they are doing their jobs. It is very difficult for any facility to get staff (so I've learned...) so they feel comfortable that they won't get fired. Any ideas on how to navigate this situation to keep my Dad safe? I'm worried about him getting a UTI. (He already had one in July that went into sepsis and hospitalization). Thank you for any ideas.

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You can discuss this with the admins and then if that doesn't work escalate it to the Ombudsman office.
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HollyAnne Apr 28, 2024
Thank you so much for your advice. I hope you and your family are doing well.
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I am a retired Alzheimer’s nurse who has worked in assisted living. The first thing that I would do is have a talk with the administrator of the building and then ask them for a meeting with them and the charge nurse. I have found sometimes if the patient is asleep they will not wake up just peek in and make sure they are safe in bed. Sometimes the staff needs to be educated on incontence care and the importance of keeping the patient clean and dry to prevent bedsores. Please address the nurse manager or administrator because I have even seen the nurse assistants dozing through the night and even some nurses will if you don’t follow up with this. Most good assist care facilities get a bad reputation because of a few of the staff. The squeaky wheel gets the oil, our loved ones deserve the best care, which all caregivers would want for their loved ones!!!
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HollyAnne Apr 26, 2024
Yes - I totally agree with everything you said! It is surprising to me that many of the staff appeared to have not been trained on incontinence care or on preventing bedsores. I spoke to the administrator several times about the issue. She would talk to the overnight staff and they would claim that they had been checking on him every two hours (which is what they are supposed to do with all residents). I think the administrators didn't know what to do since there was no easy way to check for accountability and since hiring staff for any shift was difficult, much less night shift.

Dad is back home; we have a male CNA coming in 5 hours a day and hospice comes in several times a week. It is working out well and I no longer feel helpless and angry all the time.

I hope that in the near future all staff at facilities get paid much more than they do now, because I think that would really attract more people into these jobs to know that they will be properly compensated. These are our loved ones who only have a limited time left with us -- they do deserve the best!
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This is heartbreaking to read as I am going through something similar with my mom and unfortunately I think this is the “norm”. I recently got a camera for my mom’s room so I can see if they are actually checking on her every 2 hours (as they claim) and it seems to scare the aides into doing their job. Terrible but true!
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HollyAnne Apr 28, 2024
I'm sorry to hear that you are also going through something similar with your mom and I know what you mean about it seeming like the "norm." Are things still going okay with your mom (with having the cameras)? I hope so. I hope you and your family are well. Thank you for caring and being the first to respond when I sent out my question. I was so upset and not knowing what to do; it was so wonderful to get empathetic reactions and good advice. Sending my best wishes to you and your family
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Simply not acceptable. Please meet with the director of nursing or site administration and voice this. Mention their liability if he gets a bedsore or infection. There’s zero excuse. He’s a paying customer, no matter how the bill is paid, and a human in need of humane care. I’m sorry you’re going through this
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HollyAnne Apr 28, 2024
Thank you so much for your heartfelt response. It was very difficult and we did talk to DON and facility administrators but were asked to leave. He is now at home but doing well. I still feel glad we spoke up and maybe there are ripples that we don't know of that will make a difference...
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I use heavy absorbent diapers with heavy absorbent insert pads for my husband during the day. At night I put a catheter on him, which is attached to a drainage bag. I put the bag in a small trash can so it cannot be disturbed. I use the same heavy absorbent diapers with extra absorbent insert pads overnight as well. I have a waterproof mattress cover I place over his bed sheet for those times he occasionally pulls the catheter off. Catheters come in different sizes, and any medical supply store will give you a size guide. (See end notes below). My preferred catheter brand is the Conveen Optima by Coloplast. They come 30 to a box, and I order them on line from ATC Medical. www.atcmedical.com. 1-877-508-4013. If you order $100 in supplies from them, shipping is free. I also recommend the McKesson Disposable Urinary Drainage Bag 2000mL (Avoid the Bard drainage bag.) This is an excellent company. Staff very helpful. I think their website has videos for this catheter. YouTube also has demonstration videos. I also put a protective ointment on his skin to avoid irritation issues.
Notes:
You can purchase single caterers at a local medical supply in different sizes to try them out and see which size is best. Be sure your Dad is not allergic to this silicone catheter. My brother in law could not use them. My husband has never had any issues with them.
You can also request catheter samples from Coloplast. Call 1-866-226-6362 or send an email to samples@coloplast.com.
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HollyAnne Apr 28, 2024
Thank you so much for this advice; I like the idea of the extra inserts to increase absorbency. He is back with us at home (with help) and it's going well but it would be good to explore ways to extend absorbency at night. We thought about catheters but we think he would pull them off...but we might look at that again.
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HollyAnne: Report this to the DON especially since sepsis had previously occurred.
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HollyAnne Apr 26, 2024
Thank you; I did report it to DON and administrators and it maybe was one of the reasons we were asked to take Dad out of the facility. I'm glad though because it does feel good to tell the truth and keep telling the truth despite what you may initially think are bad consequences (such as being asked to leave the facility). We brought my Dad back home and he is doing well here. We have a CNA who helps several hours a day and we are taking good care of him the rest of the time. The facility might've made some changes based on the things I said...they did start an "incontinence program" after we left. Also, we had become friends with other family members with loved ones at the facility and when we discussed things we were all having the same problems. Some of them also spoke up; some of them transferred their loved ones to other facilities. Anyway, dragging things out of the dark by saying the truth makes things happen and I'm glad that we spoke to as many people as possible about something that is not right.

Thank you so much for your encouragement and advocacy. I hope you and your family are doing well!
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I’m so sorry that your father is being neglected by the overnight shift. Please report this to the DON.

Are cameras allowed in your state? If so, please look into installing one. A picture is worth a thousand words. You will have proof that the staff isn’t caring for your dad properly.

Wishing you success in resolving this issue.
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HollyAnne Apr 28, 2024
Thank you so much for thinking of us and reaching out with guidance. We have him at home now and it is actually going well with a CNA helping us for several hours every day. We care for him the rest of the time and it is going well thankfully. I hope you and your family are doing well!
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Is it possible that your father should now be in long-term care instead of assisted living?
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HollyAnne Apr 25, 2024
Thank you for asking your question. Technically, yes. However, this assisted living facility had many people who were out of the range of being "assisted living" and were being accommodated for their needs as well as could be expected. Many in wheelchairs and many needing incontinence care, just like my dad. Many of them were in hospice, as was my dad...with promises that hospice provided extra support, but the day-to-day care was still up to the facility. Mom and I looked at many other skilled nursing facilities, both in our small town and in neighboring towns. Skilled nursing was more than twice as expensive and the environments seemed pretty depressing (like a hospital...with small rooms, shared with another person). My dad doesn't have any overarching medical issues, except he is in a wheelchair and is incontinent. He has dementia, but is mostly perfectly joyful, except for getting grumpy at times. I think the main problem is that his weight was such that it made it hard for staff to get him up and down. Strangely, they allowed us to have a hoyer lift even though the staff weren't allowed to use it. I learned how to get him in and out of his wheelchair using the hoyer lift and was able to do it by myself. I also learned how to change his brief both using the logroll method and using the hoyer lift with Lavin leg lifts. I taught my mother and sister how to do it as well and we were able to continue at the assisted living facility with family helping but finally the facility asked us to leave at the end of March. We actually decided to bring him back home because it seemed like the best thing for all of us since he has a limited time left and we had learned how to take care of him. We got a different hospice group which we like a lot and have a male CNA who comes in everyday for 5 hours to help us (which our long-term insurance pays for). We actually are having a lot more time for ourselves even with him being home because many times he is quietly "working" on some items at the table or napping or watching TV and we can do our own things in the house. It is nice to share meals, sit on the porch, and have visits with friends and family who come by and he is included in everything so it feels really special and natural to have him a part of it. Of course, some times are hard because, at times, he is in a bad mood or wakes up at 3am...and we know that at some point things will take a turn for the worse. But it feels like that is just how life is and we are learning how to deal with it at each juncture. Thank you to you and to everyone on this forum who responded back to me; it feels so good that you all were thinking of my issue and took time to reach out. That means a lot to me -- thank you so much!
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The patient’s care & comfort is the facility’s main job. If you have confronted the staff about your Dad’s diaper situation to no avail, I would request a meeting with the facility’s director, have concerns written down beforehand, and discuss the problems you have with the director. Would also let the director know that if improvements aren’t made, you will carry your concerns to the next level. All patients in care facilities need someone as an advocate (family member/loved ones) to represent them since their voices often go unheard. Being under-staffed or whatever other excuses the care-givers tell you is no reason for this kind of neglect. Please speak up and don’t stop until improvements are made. (As the saying goes, most times, it’s the squeaky wheel that gets the oil and your Dad deserves it!) Highly recommend installing a camera in his room; Walmart sells what is much like a baby monitor which includes a program that can be installed on your ipad/phone. You can check in on your Dad instantaneously, review videos recorded throughout night, and talk through camera to him if he seems agitated. (Internet access is required.)
V-tech camera:
https://www.googleadservices.com/pagead/aclk?sa=L&ai=DChcSEwi5_Omwy86EAxUUU0cBHYGPBrAYABAIGgJxdQ&ae=2&ohost=www.google.com&cid=CAASJuRomifKckqkstm3yHXDoz8rpVZFrUC7_RZO-rJRdlFlzdmG55Up&sig=AOD64_2rlVfYTqZ9QG9oMZ5mDmAJQlygog&ctype=5&q=&ved=2ahUKEwi14uKwy86EAxWhtokEHZYoDQcQ5bgDKAB6BAgDEDI&adurl=
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HollyAnne Apr 28, 2024
Thank you so much; I agree that everyone in care facilities need an advocate! The baby monitor is a great idea, even now that he is at home. Thank you for your help, Holly
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Every state and US territory has a LTC Ombudsman program through the Congressional Administration on Aging. States’ Long-Term Care (LTC) Ombudsman programs work to resolve problems related to the health, safety, welfare, and rights of individuals who live in LTC facilities, such as nursing homes, board and care and assisted living facilities, and other residential care communities. Ombudsman programs promote policies and consumer protections to improve long-term services and supports at the facility, local, state, and national levels. Each state has an Office of the State LTC Ombudsman, headed by a full-time State LTC Ombudsman who directs the program statewide. I can speak from experience in multiple situations that the Ombudsman staffers are eager - and immediate - in investigating and helping resolve issues.
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HollyAnne Apr 28, 2024
Thank you so much for reaching out to help. This is very good information to know and we still have an unresolved issue that would be good to run by the ombudsman.
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