Parents caring for the parent support thread (Part 2)

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743

Our bodies need more O2 when we are at altitude, exerting, sleeping, digesting food, etc. it’s hard for people, even MDs to come to terms with. People especially resist using O2 for showering and bathing and golfing, though it can really help many. They also resist using it for exercise and end up declining due to deconditioning.

It’s hard to reason with folks when they dig in their heels. I wish it were easier and we have our. Halle he’s with my 92 year old mom. Dad was much more stubborn and tougher.

744

The latest in my dad’s situation, is that he’s getting out of the hospital and going to a memory facility near their home on Thursday. Hospice is showing up on Friday. I feel a little weird about that, because nothing is imminently killing him, I guess you automatically qualify if they decide you have severe dementia. I realize one can’t live too long with that, but sometimes he’s completely lucid. He has a lot of words left. Not trying to engage in magical thinking, but I think he could have a ways to go. I don’t want them to stop his supplements and medications. But people are saying that hospice is incredibly helpful, and they get the equipment there fastest, it doesn’t cost anything and it’s recommended. Just doesn’t seem like he needs this yet.

745

I’m sorry to just jump in here, but does anyone have any helpful advice re: hospice care for dementia patients? My mom has Alzheimer’s and is currently living in her home with my dad as main caregiver. But he is 93 and needs a lot of support from me (I live nearby). My mom is 92 and manages ok for now. Would love to avoid having her go to a nursing home (they don’t have good financial resources) and just want to be prepared when the times comes that she needs more help than we can give in home. She was in fact a volunteer at a nearby hospice facility for years. Thanks in advance.

746

@JDA_1990 was he a veteran? There is a lot of help for veterans out there. They were going to send Visiting Angels into my parents home to help them as much as they needed. The VA will provide durable goods, medication, all sorts of help. Medicare will provide hospice wherever they are if they have been diagnosed with severe dementia or Alzheimer’s (what the social worker told me). My dad wasn’t ever diagnosed with severe dementia until a doctor put it in his records when he went to the emergency room, then Kaiser quickly approved it, and we hadn’t even asked for it. If their finances are low enough, they might qualify for Medicaid help for an adult family home or other living situation.

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747

The body builds up more blood cells to compensate - that’s why the Olympic training center is in Colorado Springs.

My daughter came home from the hospital after a premature birth without O2. It was a medical miracle! (10 weeks with O2, 3 more in hospital without) All our NICU friends came home on O2.

My friend’s husband just had to come home from the hospital on O2. He was fighting it but even after a week he dips to below 85 if he takes it off. Gee, that’s what happens when you smoke for 50 years (he did stop about 10 years ago), drink too much, don’t exercise… I think he’ll get off it during the day but need it (or a CPap) for sleeping.

748

Having too many red blood cells can create heart problems and right sided heart failure and more issues. To me, using supplemental oxygen to stay properly saturated (at or above 90% all the time) is something that folks need to adjust to if they want to live the best life they can. I don’t want or need heart problems to go with my lung problems.

749

My mom had hospice care towards the very end of her battle with Alzheimer’s. It was hard to qualify her before that as she was fairly young and otherwise healthy. It can’t hurt to talk to your parents’ doctor to discuss.

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750

Interesting about the dementia for @busdriver11, my mother had Lewy Body Dementia (it was severe by then and she was in her 90s) and was pretty much out of her mind for the last 6-8 months. She was declined for hospice initially as dementia does not qualify, I finally got her on what turned out to be maybe three months before she died. The first time she was declined ended up being within 6 months of her death.

After she died when they asked for feedback I told hospice the best improvement would have been a way to get her on sooner as I was desperate for help. Not a lot of help, just more support from people who have seen this stuff and could help me spot problems before they got bad. Hospice was pretty snotty in their answer that they stood by their decision. In my county I had a negative impression in hospice with both parents, many years apart.

751

My father with dementia has been on hospice for more than 6 months. If the person is declining they can stay on. Our hospice told me they’d had some dementia patients on hospice for 3 years.

A nurse comes once a week and sorts his pills for the upcoming week, makes sure he has refills, takes vitals, and chats with him. A social worker checks in with my Mom and I to offer support. A pastor has called me. We haven’t used these services, but there are volunteers who play music or sit with the patient.

It has been a great experience for our family.

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752

That really sounds nice, @cinnamon1212. I was afraid they were going to want to take him off everything, give up and hasten his death. What your dad had sounds perfect. Maybe they’re really gearing it to what you and him need.

753

I don’t think hospice wants to hasten someone’s death, but they don’t want extreme measures taken (which I agree with). So if my Dad were to need antibiotics, fine, but a heart bypass, no. Of course, if a family disagrees they can go ahead with the treatment and the patient is then taken out of the hospice program.

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754

@somemom that’s terrible. It seems like they should have approved her far earlier. I wonder if it’s a decision based upon which insurance provider it was? In our case, we hadn’t even requested it, I think maybe an emergency room visit when the person is acting crazy with dementia will trigger it. It seems that calling 911 is what the key is to getting anything done. And hospice didn’t make the decision, it was the insurance company.

755

I think it really depends on where you live, what specific hospice agency it is, on the care goals - and the parameters with working with the family. There is a broad range of thinking out there on respect for life. Being careful in selecting the right hospice agency can help with having things running the best way for win-win-win, patient, family and agency.

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756

With Lewy Body Dementia - something was amiss with her denial. So sorry you had such issues, and maybe not a lot of choice in hospice agencies. Yes they were snotty because with her death within their parameters they were wrong in the denial. I live in an area where there are a lot of hospice agencies - and being for-profit or not for profit does not mean the not for profit is a better fit.

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757

In my mom’s location - she had to go through the ER so they could have the 3 MDs determine if she was qualified for Hospice. She was qualified. They had her on hospital IV antibiotics for 4 days for a suspected gall bladder infection, she went home to a hospice hospital bed in her home on Thursday, and died the following Monday.

758

It’s possible that reaching out for more help with ED visits would have helped, but I would have suffered the consequences. She got so fragile her last 18 months that even a 15 minute drive each way for an ice cream cone took her from getting up and down herself toileting herself, even dressing herself, to looking dead in the bed, requiring 24/7 care for about a week after that outing. We tried a few outings over a few months, and they just wrecked her. An ED visit, I cannot imagine. Even if she’d gotten hospice, it would have been me 24/7 dealing with the fallout.

Hospice provided lovely shower aides, and that would have been super as I went through several over time, including one who quit whilst I was traveling and had a sibling covering at my home.

Hospice provided meds, but that’s not a big deal. Mom had great insurance. But the nurse and shower aide to take a look etc., that would have been dramatic help. For example, she ended up with bad abdominal pains right when she took a downhill turn, I had hospice out to visit and they warned me she might be constipated. I’d never thought of that being the cause, was not charting her toileting (this was right when she went down quite a ways, the weeks before she was crazy with the LBD, but more functional. Had that nurse not given me that idea and I started the Miralax, we might have ended up in the ED. That’s the kind of help I needed.

I am medically quite competent. My mother fell twice, once before hospice, once on hospice, both times she cut her head quite badly. I had a suture kit, lidocaine and a surgeon neighbor stitched her the first time. The second time I called hospice and they offered to call an ambulance, I had hoped a nurse would staple her head and avoid the ED. Instead I bound her head and we watched it for a couple of hours. She and I had many talks and she absolutely did not want life prolonging Tx if she lost her mental faculties, we would not have not CT scans, or treatment for a brain bleed, there was nothing to be gained in the ED…except, perhaps, hospice the firs time? But I did not know, and I still would have suffered the decline in condition.

One big positive is that all my kids and I and DH have had lots of talks about what we want in all sorts of situations so they can feel good about making a decision for us.

My county only has one hospice and I remain unimpressed. I handled the hospice enrollments for my in laws in a competitive county and it went great. I think we just have a group with some nice people and some lousy people and no competition. Yep, I have signed the forms and DNRs for 4 adults. LBD is tough because the condition can vary dramatically day to day or through the day- can feed herself, cannot find her mouth; can dress herself, walking around the house half naked; can walk safely, falling like a tree-just timber straight over. Dramatic variations means a visit on a good day doesn’t help your case.

I hope this does not come across as bitter, just pointing out the regional variations and I think I am in the same state as @busdriver11.

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I’m in WA, @somemom , in the Seattle area. It sounds like you had quite a struggle and an incredibly difficult time. I know nothing about hospice, but the agency we’re working with is who the memory care facility likes to use, they sound really sharp so far. We have a number of options, though.

I think that maybe some hospices are fantastic, others not so much. I hope we got lucky, it’s a service we weren’t expecting anyways. I’m sorry for the difficulty you had!

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760

Yep, I am probably 100 miles north of you and our county just has to one option. I hope there is competition here before I am old enough to need hospice!

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761

My mother has been on hospice three times, for a few months each time. Hospice care can improve the situation to the point they don’t qualify. She was technically on for dementia but had been in hospital for GI issues.

Important point: hospice Medicare is different from regular Medicare. Once you go on hospice, you are on hospice Medicare which does not cover any care related to your diagnosis. And some hospices will give you trouble about other care. You can go off for one day, have a diagnostic procedure or treatment, then go back on…

I was a hospice volunteer and did 6 weeks training. The biggest misconception, they told us, that people have is that hospice is for when you are close to death. This results in most hospice stints being days. They really want people to go on hospice early, and often people go on and off, or stay on for years. Eligibility is reviewed every 3 months.

They don’t make you go off all meds unless the meds are related to the diagnosis for which you are on hospice. They do offer, say, to stop Coumadin, but we declined to do that. My biggest issue was with the meds they often use: sedatives in particular, since they pose a fall risk and we were not at the point where we wanted my mother to just be asleep in bed. But they worked with me on this. The daily aide and two weekly RN visits were most helpful. Social worker, chaplain and volunteer not really needed.

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762

My mother is over-anticoagulated with INR of 4.2 and the stool in her colostomy is black. Afraid of a GI bleed.

In just two months after a series of infusions, her anemia has returned to severe, which could also indicate bleeding.

The hospital lab system is a mess and I had to push push push not only for the blood tests but for results. I finally got results and had to wander around the assisted living facility to find the 3-11 nurse to say NO COUMADIN!

I made a lot of phone calls and found a PT who will evaluate the vertigo that has kept my mother in bed. I am now not sure what role the anemia is playing in all this.

MD virtually today at 4. Going to ask for an order for palliative care or hospice again. Since we are no longer chasing diagnoses or causes, the hospice would be for dementia again even though I think she is actually suffering from a GI bleed.

My brothers and I have to decide whether to seek a transfusion or more iron infusions. Her severe anemia recurred after two months, and the interval before that was 7 months. In terms of quality of life, we wonder about iron infusions every month, and how long she could keep that up. It would appear the cause is outrunning the treatment.

One other thing: hospice had me fill out a form for my mother to sign that said DNR, no long term artificial nutrition, no artificial ventilation at all, no transport to hospital. That way, the facility or hospital or MD calls me, the primary proxy and P of A and I can lift those restriction if need be, but she has maximum protection from extraordinary measure on paper.