How is the bed sore healing? That could be the rationale for keeping the catheter.
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Try your area agency on aging for the onbudsman. Can find National Consumer Voice
Maybe medical necessity?
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The sore on his rear end apparently isnât actually painful, but superficial. The nurse said it was healing well. My mom thinks he should stay in bed until itâs fully healed, but I think that is crazy. Itâs not like getting up and walking or sitting in a wheelchair would injure it, but staying in that bed will kill him. The hospice nurse seemed to think he would always have a catheter. I am going to ask for a detailed explanation, as why would you have to have a permanent catheter? It leaves more chance for infection, and God forbid he rips it out.
Once his bed sore is healed can revisit the catheter. Perhaps with the treating of the sore he is staying off of that area, and the lack of bed pressure along with his skin being clean is allowing the healing. I suspect having his diapers changed so often is perhaps causing his agitation because he is not remaining lucid for super long periods. It is one thing if he can consistently use a urinal bottle and has that âroutineâ down. If one empties the urinal bag before he does any activity out of bed. Using a walker, the urinal bag can get clipped to it, if he is strong enough to walk - otherwise on the wheel chair. A catheter isnât âpermanentâ - but it perhaps is best unless he has enough mental function to usually using a urinal bottle. Although the catheter has an attachment on one leg, it doesnât impede the other leg from moving. If it was my dad, I would not review the urinary catheter until his sore(s) are healed and he can regularly use the urine bottle with the diaper dry during the day.
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My mother is on a âBridge to Hospiceâ program while we await results of 5 iron infusions for anemia. Two more this week and one next week. If the iron infusions arenât helpful or helpful for long, she will go on hospice. She has been on hospice twice in the past but this time I think she will stay on it.
Caregiving has intensified dramatically despite my efforts to get the assisted living to provide some services at $9k/month. I have been getting her up for infusions, and then have to go back to do vertigo exercises. I live 30 minutes away. So I asked that they get her up for the infusions, put her in a wheelchair (even in bathrobe) and transport. I made all the arrangements with the infusion center to come out and get her, and call for a ride back.
The assisted living did not succeed in getting her up and did not notify me or the infusion center. I found out because my mother called me at the time of the appointment,from her bed. I read the AL the riot act and told them to go back up and get her up, and I called the infusion center to see if they could still take her. I then called my mother, who was still in bed, to tell her nurse was coming to get her up, and IF SHE DOESNâT WANT TO DIE she should get up!
I sent the AL a list of tips for getting her up. Seriously. Things like turn the light on, put her hearing aid in, raise the head of the hospital bed and, um, tell her she will die if she doesnât go. They can call me and I will tell her to get up. Weâll see how it goes this week. Setting boundaries for myself as I feel kind of exhausted by recent weeks.
Congestive heart failure, kidney failure, severe vertigo, and severe anemia. Not eating. And the loneliness of being isolated by illness, staying in her room. I go every day and then look at airbnbâs to rent to bring her to. Fantasy? My current rental is tiny. She holds my hand and cries.
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Iâm not sure how you decide that one can regularly use the urine bottle with the diaper dry during the day if you canât try it out, since he has the catheter. Before this mess, he used a urinal bottle, the toilet, and a diaper. Now he is very protective of that area, and that might be the reason for the fuss of changing the diaper, heâs keeping his legs together with that tubing. It also might be the reason he feels like he needs to stay in the bed.
Reading about the âforgotten catheterâ is alarming, how they get installed in the hospital when they first go in, and they are left in because nobody questions it, and elderly dementia patients donât advocate for themselves. The high percentage of bladder infections, tethering someone to their bed, dementia patients who donât understand or forget that itâs there and tear it out (God forbid! 
) makes me think thereâd better be a darn good medical reason to keep this in. If he does start walking, I am afraid heâs going to do it on his own with the cath bag attached to his bed. Awful. If they have to change his diaper three times a day, well, my mom is paying $6900 a month for that.
If the bed sore is healing and he your dad is safe to get up, Iâd talk to the staff about removing the cath. My mom didnât have one until she was in her very final days.
Itâs possible that now that your dad is perking up (which happens a lot when people are more comfortable), it will be OK for him resume some of his normal activity.
Iâm wondering if hospice thought he was more imminent than it seems.
Keep advocating. You are doing a great job!
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For 9K per month, they canât manage to get her up? Thatâs insane. Thereâs always a way to get someone up, so glad you read them the riot act. Is a blood infusion appropriate for your mom at this point, or do they just give iron alone? I recently gave blood because my iron was high (doctor said that helps), and I was thinking that blood could be helpful to someone who has a low iron level, though Iâm not sure it works that way!
For that kind of money, what about a nice Airbnb and home care help? Sounds like youâre doing most of it anyways! I am so sorry.
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I think they thought he wasnât going to be around much longer at all, which is why we got pushback on keeping him on his expensive blood thinner, Eliquis, and put him on baby aspirin. When I informed the nurse that the VA pays for that, not Hospice, so my mother will provide, she said the VA anti coagulation clinic was concerned about falls. To which I said, âWhat falls, heâs not even getting out of bed?â
I feel that they are trying to withdraw him from all his meds since heâs dying anyways, but how do they really know.
Yes for 6 1/2 years I have done most of the work. If she isnât going to die soon I will move her (and me) to a 2 bdrm apt. There are COVID cases among staff and residents and it is scary but I go in anyway.
MD doesnât want to do blood transfusion which, yes, would work better. Her hemoglobin was 8.3 and last March they gave her two blood transfusions in the hospital with hemoglobin around 7. The hospital is full of COVID right now I am told so avoiding it for now.
I told the visiting nurse what bad shape my mother was in over the weekend and the nurse said âshe will be up and down with dementia.â Itâs NOT her dementia. She was fine on Christmas and then something happened and she actually needs a wheelchair to even get anywhere without trouble. Maybe GI bleed, maybe stroke. Late Dec. she had her lipstick on and was animated.
One thing none of these nurses get is that oxygen deprivation from anemia does not show up on an oximeter. I am so tired of the âwell her vitals are fineâ as if she is pretending or something!
If they cannot get her up tomorrow by 11 for infusion I am calling the ombudsman.
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Iâm glad youâre thinking about calling the ombudsman, seems like theyâve had plenty of chances! I wonder how you get someone to listen to you about the oxygen deprivation? Do you need a specialist to delve into that, or can they just give her some oxygen? My dadâs hospice folk brought some oxygen over to his place for someone else, and just left it there in case he needed it. Doesnât seem like such a big deal for that to be provided.
Thank you. Our hospice- both in this area- and all the docs- suggest taking my mother off blood thinners but I tell them no. She was taken off for a few days before an endoscopy and the GI doc didnât bridge her with anything else, so she had a stroke.
Hospice services should NOT be assuming imminent death. Many recover with services. My mother has been on twice previously.
Also, Hospice Medicare allows you diagnosis and treatment for conditions not related to the diagnosis for which your father is on hospice.
I took my mother off one of our local hospices when they called me to say she was âtransitioningâ based on breathing patterns, meaning dying very soon (like being in labor). They gave her dilaudid, a strong pain med, as well as ativan, a sedative, just before her Lunesta, a sleep med and gabapentin. I mean enough to put her really out. She slurred her speech the while next day.
She was not dying. She was upset by a tablemate. That is all it was.
Donât let them assume your father is dying unless you and primary and docs who know him well think that!
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All those medications that they gave your mom, compmomâŠitâs surprising that they didnât transition her to death that day!
Exactly. It is a well-known and respected hospice organization but I took her off immediately and am now using a âBridge to Hospiceâ service until it is clear she is dying. It talked with my mother despite her dementia and she says she is not ready to die, so that makes a difference too. I want to give her the best shot but not prolong suffering. But that simple goal is more complicated and nuanced than we think until we are dealing with it! Good luck with your situation and thanks for your comments!
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I have never heard of the Bridge to Hospice, interesting. Does Medicare cover that? Your mom saying that sheâs not ready to die yet means all the difference in the world! My dad has always said he was going to hang onto the very end, but I donât want him suffering horribly! It is a tough call, knowing when to quit and how much to push.
The hospice nurse texted me back about the catheter concerns, saying it wonât stop his mobility and sheâs not sure heâs clinically able to have it removed. Which makes me think she has no idea of whether it should/could be removed, and is just going on autopilot.
She did just respond and said sheâd send my questions to the doctor. And that having a catheter is definitely not a convenience for the staff.
Itâs good the nurse is consulting the doctor. Do you use a portal? You could also message the primary care doc for any concerns. I try not to drive my motherâs doc crazy and exercise some restraint 
Bridge to Hospice is offered by our local hospital system: it is their name for it. Regular Medicare pays for it until she is on Hospice Medicare when totally on hospice.
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A catheter is not an impediment to mobility. My dad (no dementia) had one for a limited time but was able to get around on his walker just fine. Itâs one more thing to navigate (you hang the bag on the walker or have to strap it to a leg) but shouldnât present a problem. The bags come different sizes.
The real problem is actually staying in bedâthatâs when you get bed sores and muscle strength decreases so you canât get out of bed even if youâd like to. Mobility keeps all those other organs going also like your intestines. One thing builds on another. Even if he is not walking he needs exercise of some type on a regular basis.
Unfortunately nobody knows your parent like you do or has so much invested in his care. No matter how great the nurses or doctors they only see snapshots of whatâs going on. They only see what was in a chart (usually nothing good). You just have to be very forward when you want something to happen.
I liked the experience I had with hospice when it was involved with my FIL but their focus is to make death a better experience. If your loved one wants to fight and get treatment then it may not be a good choice.
Hugs to everybody. My sister and I were able to pull off taking care of dad at home before his death but even with two of us playing tag team and sometimes just hanging together for mutual support it was exhausting both physically and most of all mentally.
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@busdriver11 I just had a long talk with the physical therapist who has known my mom for 6 years and sees her in the facility. I asked her to talk to the new nurses from her organization about how this is not just âup and downâ from dementia but a dramatic change in presentation over the last 3 weeks: she is ill. Labyrinthitis most likely, and anemia. I also talked with her about the facility not getting her up. This PT will advocate in a way that I cannot, with the administrators and other providers. I call it the âthird party approach.â Whenever possible I get a professional third party to advocate!!
Right now I keep thinking it would be easier to live with my mother, and I look at apartments to rent with her, but then posts like@gouf78 give me pause. I am alone, 70 myself, back fractures, probably not a good idea, but I wishâŠ
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Please think twice about bringing your mother to live with you. My mother, who died at 87, was at home until the end( in between hospital and rehab stays her last few years) as she lived with my sister. I was out of state but went on and off for weeks at a time to help. I was there about the last 6 weeks of her life and she went into hospice only about a week or so before she died. She was a small woman but was dead weight the last few weeks, was a fall risk, etc. Eventually bedridden but had to be turned, etc. You risk your own health and safety by trying to do too much at home. Especially at your age.
All the best to those still in the trenches with this. I know itâs hard.
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My friend has a hoyer lift and sling to help with maneuvering her 6â + dad who is deadweight when he is fatigued , which is increasingly common. He will just fall or crumple where he is. They are working on him crumpling as itâs less likely he will break anything.
They are trying to train his many loved ones and caregivers hi are mostly female and much smaller than he is. He wants to remain at home and before she came down to help, the fire dept had been called 6 times to assist when he was down and no one could help him rise.
The Hoyer lift is an amazing tool but takes work and sone persistence. My friend taught herself by watching a few YouTube videos.
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