When to go for Hospice?

Side note: MJ, definitely continue the leg wound treatment. While it may require long-term, even ongoing treatment, it is far from a death sentence if managed properly. Wound care takes time even among the most healthy; for the frail elderly, it takes much longer. Good luck!

MJ, just letting you know you are doing a great job. I love your empathy and the fact that you realize how terrifying and exhausting the whole hospital experience has been for your mom.

What you both need right now is some...peace. For now, just focus on getting her back to her MC. If MC cannot address her wound, you should be able to get some sort of home health care to tend to her wound needs. Also there are lots of different hospice agencies. One might deem her "ready" whereas another may not. I would think that if her primary care doctor says she is ready for hospice, any one of them would have to accept her. But as you describe her, despite her numerous ailments, none of them seem life threatening and I can see where someone might say she was not yet ready for hospice. I am assuming bringing her into your home is not an option. It sounds like she did come through the hospitalization like a trouper - physically at least - and that her biggest issues are mental. Whatever you can do to bring peace to her at the moment should be the priority. Best wishes.

12/27

An update for everyone --

After 10 days in the hospital with a blood infection (they changed their mind on the pneumonia diagnosis), Mom was transferred to a sub-acute facility last night to finish off her IV antibiotics. (Her MC can't administer IVs.) Once again, she's been moved someplace she doesn't know, she's terrified, and I can't see her or talk to her. It's awful for both of us, but far worse for her. I just hope she doesn't think I abandoned her, but I did take letters to the hospital to be read to her telling her she's safe and that I'm taking care of things from outside. She has no concept of COVID and visitor restrictions, so I don't know if any of this will permeate her mental fog.

With luck, she'll be moved back to her memory care next weekend, and I'll definitely get a hospice consultation and get it set up. She doesn't need to go through this anymore. The doctor at the hospital didn't recommend taking her back straight from the hospital and going with oral antibiotics, but he did feel she would otherwise qualify when she gets back to memory care. He said she may recover from this infection -- it was a blood infection, not pneumonia after all -- but he also said it will happen again.

It's time -- she needs to rest and be cared for, not poked and prodded with needles and ignored by nurses who are desperately overworked. (They did take excellent care of her, but we're in California, so you can imagine how things are in terms of medical care in a hospital.)

Thank you all for your input.

Except for age difference and CHF, your mom could be my mom. She developed dementia around the age of your mother (at least enough to make it noticeable to me, not so much to anyone else.) She lived in her own condo at that time and after trying to bring in aides, minimal to increase as needed, we had to change plans to a facility when she refused to let them in. Neither brother would have been an appropriate care-giver as they are both clueless. I couldn't do it physically, so the search began for a place. The one chosen was a non-profit endowed place that they tore down the old buildings and rebuilt into a lovely IL/AL/MC place. It was about 10-15 minutes from my place (vs 1.5 hours to her condo.) The opening couldn't be soon enough! MC was last to open and didn't mom "bruise" her leg and develop cellulitis (she told her neighbor she bruised it, but didn't tell any of us.) It happened just before the planned move - which probably saved her life as I wouldn't have been able to get there for another week or so at that time, and wouldn't know about it to look at it! This delayed her move a few days, but she was the first to move into the MC unit. Two rounds of antibiotics and wound care were needed.

Anyway, this month was the end of year four living in MC. She moved in mobile, but sometime last year, mainly due to inactivity (her fault) and weakness, ended up in a wheelchair. She had a stroke just before Labor Day. Doctor approved request for hospice, but THEY denied. Their main reason? She hasn't lost weight in the past 6 months! She didn't have a stroke 6 months ago!! The MC nurse stayed on top of them and made them come back - she did end up losing weight as the stroke affected her right side, which impacted feeding herself, swallowing and speech (slurring.) Finally they approved her.

She refused transport to the hospital when she had the stroke. The EMT tried to get me to approve it, but as I said to him, she doesn't want this, so even if I say okay, you're going to have to take her kicking and screaming, she likely won't do well with testing (dementia and hearing would interfere), there's not much you can do for her and NO hospitalization! Goodness, she's 97, nearly if not deaf, macular degeneration treatments were stopped when she had the stroke, in a wheelchair prior to stroke and high BP (on meds many years, but now having trouble with medications.)

Despite being denied, I would recommend trying for it. Even if they do deny, stay on them. Since she's in MC, hopefully the staff (esp the nurse) stays on top of this and advocates for her (you as well!) Even if she improves and graduates off of hospice, she can always go back on. IF she developed any condition that required hospital, you could take her off, get treatment and go back on. I know my mother didn't want anything excessive for medical intervention, so I chose to defer to her wishes about going to the hospital post-stroke. She was so feisty after the fact that she kept asking who called the EMTs. When the nurse admitted it was her, mom got mad at her and tried to kick her, from a wheelchair! She remained pretty headstrong and feisty right up to the end. Based on what they reported to me, it sounds like she had another stroke, which did her in. She only lasted about a day and a half after that. It was hard, but it was good that it was quick and she didn't linger or seem to suffer.

Ask for hospice and KEEP asking if you have to . Get her back to her "familiar" MC space. Being moved definitely impacts most with dementia, which shows in her shutting everything out and refusing things like food and meds. IF she can reorient to her MC, she might have some improvement.

My mother is 95 and has dementia. Because of that, she qualifies for hospice care. I care for her at home. It is a relief knowing someone has my back when things do advance. I have learned that hospice is not strictly for pending end of life situations.

I empathize with you that her being sick and needing to be hospitalized is tough on her and you. This year with a pandemic has been tough on everybody and California is especially hard hit.

Usually, hospice is for people who are suffering from an incurable condition and are expected to live 6 months or less. If the wound on her leg is extensive and causes her great pain, this may be a qualifier. The other conditions are not qualifications for hospice. See if she can be managed in her memory care unit with supplemental oxygen or an oxygen concentrator. See if they can place a PICC line, a long term use IV, in her arm for antibiotics. If she doesn't need frequent nebulizer treatments, she may be able to be managed back in her memory care unit or on "the medical side" until her pneumonia infection clears.

Just be aware that she will probably be placed on 12 days of quarantine, or until her pneumonia clears, for COVID. You will usually not be allowed to visit her during that quarantine period.

God bless.

MJ1929: I noticed that 5 days have transpired since I'm first able to see your post. That said, I would say that it IS time for Hospice. It is IMPERATIVE that your mother's leg not turn septic. Huge prayers sent. You're absolutely correct - nurses and medical professionals in California are OVERWHELMED.

I personal have gone through what you have with my wife of 54 years and I know that the medical staff as soon as she was brought in to the hospital they wanted to send her for hospice care were she died of covid 19. What I want is the governor Cuomo of NY to answer for this terrible situation in my home state.

Many parts of your story are mine. Mom 95, Alzheimer's, macular degeneration, virtually deaf. In memory care 2 1/2 yrs. Had constant UTI's - antibiotics merry-go-round, until an angel nurse suggested no more antibiotics. (Mom's wishes for no measures are clearly spelled out, signed and posted). I worried about pain, angel nurse suggested hospice. I called dr, she was evaluated and on service within 24 hours. That was 19 months ago. They supply equipment, supplies like depends, gloves, etc- medications, shower aid 2 times per week, social worker, chaplain and more. At first they were part of my team, then in March (covid) they became my EVERYTHING! I have not seen her in person even tho she is 5 miles from me. At first even the hospice nurse had to do virtual, but now she is my eyes and ears inside. The bath aid still can not go in, so the facility aids do that but they are not charging me for it. Different companies may be different in their service, you can ask. Usually more than one company offers hospice care.
Because of hospice, I do not need to take her out to Dr appointments, the nurse checks her every week. I have a team of caring people who check on ME and how I am doing in addition to Mom. She has a "comfort care kit" at the facility with any drugs she might need for pain and will not go to the hospital. They will let me know when she is nearing the end of her life, be with her and me if I can be there, make the final call, notify the mortuary etc. And provide counseling for me and my siblings who live far away for a year. All of this is paid for directly from Medicare, you will never see a bill ( and it is not cheap). You are not signing her death certificate, you are bringing life boats along side of you to support you through what is inevitable, death and the loss of your Mom. Please do not wait, my heart hurts for you, I share your pain.

ah....not so quick to deny her statement about making her take the pills...I'd bet money she's right having been in a rehab recently myself at the tender age of 63 (this will go down as one of the biggest mistakes of my life, agreeing to that). It sounds to me like your mom has a survivor streak....I don't see her age mentioned and to me that is pretty irrelevant most times, but I am guessing in spite of it all, she is of the greatest generation....my heart breaks for you as it sounds like you have no siblings to mention and help share the burden of all of this, but know even those WITH siblings, often get no support which has been described here way too many times. I would say call hospice because you have absolutely nothing to lose. From a friend who is caring for near total care father in their home, it's my understanding it isn't a particular hospice so much as it is Medicare rules that are so rigid it is hard to be accepted into the program. If you want her back to the memory care where YOU can provide more of her care with support, it certainly would be the way to go. My guess, as for anyone, is that being in her own home and familiar environment will make her more comfortable. You've got nothing to lose with a phone call or two and getting more info...sending hugs and wishing you both the best....

As usual, this forum is a treasure of wisdom and experience. My MIL spent her last 2 months in our home in a spare bedroom. We'd arranged hospice worker who came at least 2-3 times a week, who performed and recommended any and all palliative care. We did not have to decide; the hospice worker told us that she would let us know when it was time to transfer her to a hospice care facility. She arranged for the medical transportation ('ambulance'). The same day, my MIL lost consciousness, was transferred, and died within 3 days at the hospice home. It was a GODSEND that she was comfortable, under constant medical attention, and the facility was wonderfully homey and not 'hospital-y', and had a small 'visitor bed' in her room, so being with her (we took shifts) made it easier for all of us. I pray that you are able to access such a hospice, even in spite of this nightmare time of Covid. God bless you, MJ. You're in my prayers.

Our hospice Director said people wait too long to get hospice. A failure to thrive is a diagnosis. Hospice can come to the hospital but with Covid, I really don’t know what the rules are. Can she get a vaccination since the elderly are in group 1b — almost there.

I am devastated by your nightmare. There are no words to make any of this better. One thing to check on: because of Covid, hospice at my mother’s memory care is only online.

Many different companies provide hospice. Some have their own facility; many do not. They are not all the same. Do your due diligence before deciding who to use.

My MIL was on hospice for about 18 months and then removed from hospice (at age 97, no less) because someone made a determination that her health wasn't deteriorating even though we saw small signs of her health getting worse. Within days of being discharged from hospice she declined quickly, had to be moved from AL to nursing home and had passed within a couple months.

Dear MJ, this is so difficult to write. My mother's funeral was yesterday and I want to share with you what I have seen. My mother entered hospice 4 years ago. She stayed in for a year; I have never seen anyone work so hard to get her better. She graduated after really hard work. I too, have had Mom sitting on a bed in hallway of emergency room for 10 hours, and in an emergency room for 24 hrs twice. It's horrible. And this was before co-vid. About 5 months ago my mother at 95 entered Hospice again. She had shingles and it just knocked her down. I got her family doctor to sign off on it and called the same hospice as before. I refused to take her to the hospital. She got to have her same chaplain as before and it was just like family, the nurse became her best confidant. Call them now. They will take care of her and help you. All are not alike but you cannot lose. Ask them to be with you when your mother passes; they can answer questions about her not being in pain and other thoughts that will go through your head. Beware intruding relatives and let them know you are in charge and you are taking care of her. It's amazing what people will come up with. You need to be with your mother. Bless you and and your sweet mother in this time of pain.

Contact Hospice and they will come do an evaluation to decide if Mom needs them. My Dad with Alzheimer's failed his first evaluation, but the second one a week later showed he was in a state of decline. That is the criteria, not the timeline before death. Sounds like your Mom would qualify.
Whenever she gets on Hospice please remember these Angel's are there for you too. They were available for me and my Mom to talk to, grieve with and get lots of info from. Even now, 6 months after my Dad died, Hospice has been in touch with Mom.
I know contacting Hospice sometimes feels like you are giving your Mom a death sentence. Please realize that is not the case. You are giving her, and yourself, the opportunity to have loving care, dignity and comfort in her remaining time.
Best of luck to you both.

I would say yes its time for either Palliative care or Hospice. They can offer your mom comfort while caring for her. It will hopefully bring you consolation knowing extra parties are checking in her. Lets hope and pray you can see her soon.
My experience with Hospice care at my dad's home was positive. My only regret was not asking to start it sooner.
God be with you.

It is never to early to contact Hospice and see if it is an option. They will let you know. From your description it sounds like they would accept her. If not since she is in MC now you could select Palliative and they will monitor her and when it comes to a point that she is eligible they will let you know.
The nice thing with Hospice is that you will have another set of eyes on mom monitoring her. The change you might notice would be some services that MC provided like showering or bathing her Hospice would do and not the MC so there would not be a duplication of services. (for example if MC charges for bathing once Hospice takes over that charge should be dropped.)
As I said it is not to soon to make the call they will let you know.
((hugs)) and Peace to both of you...

Absolutely call Hospice. Your mom needs them. Love and prayers to you and your mom.

My mom passed in March. She was on hospice at home and I will be forever grateful that we chose that path one year prior to that.

My mom had a series of hospitalizations over about 4 months. Prior to that, she was living at home independently. The series of illnesses finally ended with a hospitalization for pneumonia and chf and vascular dementia. Her poor heart just couldn’t handle it.

I was at the hospital faced with the decision to take her home or to a long term facility. I asked about hospice and they did an evaluation and she qualified.

They beat us to the house with equipment and started caring for her that evening. We had 2 nurse visits per week and an aide came 3 times per week to help with bathing and such. They were also available 24/7 when we needed help.

I hired private help that increased as we needed it. Hospice did evaluations periodically to see if she needed to continue with hospice. She almost came off over the summer, but she started to decline again in September.

In January, she started to receive 24/7 care and hospice continued to be a great support. Finally, in March, she fell and hit her head. The people caring for her at the time took her to the ed, but she just kept spiraling.

I would so recommend calling hopsice for an evaluation. You can still get care for your mom as needed but there will be no more frustrating and scary hospital trips. She will get the care she needs and stay comfortable. Covid has been a tragedy for elderly dementia patients. I am so sorry that your family is suffering through this.

Hospice is terrific. Many people get back to baseline in it because it's a different orientation of care. You can be in it for a year, get better and come off of it!! I recommend it highly. The world (medical system) sees it as a last ditch, end of life route, but it can be an amazing opportunity for all kinds of things to happen. If comfort and consistent low intensity care is what you want, then go for it. Your mother might turn a corner or she might be allowed a safety net to begin to let go on her own terms. Either way, it'll be different than what the hospital can offer, especially right now.

My heart feels so much for you and what you are going through . Did your mother tell you about her medical wishes ? My mother and father are both on hospice . All that means is that they have care at home and don’t need to leave home. My father beat all odds and lives safely and peacefully and home with my mother and care . It wasn’t easy but any fear he had did not come to be . Everyone has an opinion. My father wanted quality of life and I respected that . Knowing he would t want to go to the hospital . It is an unselfish act to allow them to be i there home and to trust when there time on earth has come to and end. I pray you find peace and the answers you seek. Hospice is a beautiful thing and they can remain at home where they feel safe. God bless your breaking heart .

Mom was on hospice with dementia before she passed  the nurse also treated a wound on her ankle that took forever to go away. Before hospice she was in the hospital a few times, she fell at the assisted living and broke both her wrists and then fell  out of bed once. She never did good  at the hospital, she would not  sleep and they had to knock her out so she wouldn't try to get up. I was told dementia patients never do good in hospitals. Watch for uti's also those can make big differences in older people who can't tell you anything  I just don't think they ever drink enough water  so they always get them

Don’t rush. With vaccines on the horizon the situation may improve. Does not the MC have a resident Medical Doctor? Consider all the pros and cons. More importantly how will you feel if you do not bring your Mother to the Hospital in an emergency?

I agree with all who suggest at least a consult with hospice. Going through this with my mother now! I guess the question is why would you refuse additional support or services at this time? Hospice is a great option for comfort care and support (and relief) for patients and their Loved Ones!

My husband has dementia and is 65 years old. He is not able to do anything for himself and I can not get him into the car to go to the Dr, In our area my PCP told me about a HOMECARE Dr group that visit pts at home. When I had this Dr come to see him the first time, he suggested to me to put him in hospice. I held off for a month or so then agreed to do hospice. He is still on hospice and it is 3 years now. All staff visiting us must wear a mask and usually gloves, with them getting covid checks weekly. Maybe your Dr can suggest if she is ready for hospice. Hospice does go to nursing homes too I found out. It is so hard. God help you through this difficult time.

It is my personal experience after a lifetime in nursing that we wait to long to call in Hospice. Definitely call them when you are at the point where you will not transfer her for treatment, when she doesn't wish to be transferred for treatment. My brother went into the hospital with septicemia from a cellulitis of his leg after a non healing wound. I wish the hospitalization had been skipped; it was hideous with the antibiotics giving him constant explosive diarrhea and him begging to go home to die, home with Hospice, and me in another city trying to advocate for him in covid times. I can sympathize with you completely. Get Hospice in would be my recommendations. Keep your Mom comfortable. I wish you very good luck ongoing. Only you can decide what is right for your Mom right now; wishing you luck in your decision.

I would like to encourage you to request a hospice consultation.

With hospice the life expectancy is 6 months or less, but that doesn't mean that it won't be longer. As long as they meet the criteria (declining or not improving) and the life expectancy is still 6 months or less, she should stay qualified. Hospice is a godsend, which you probably already know from having them with your Dad. It is also an underutilized Medicare benefit, maybe because people feel like it's "giving up" when in reality it's accepting the reality that death is probably going to happen sooner rather than later and welcoming the help hospice provides.

We requested hospice with Daddy when his Parkinson's started getting worse faster. We realized at his 91st birthday that he probably wouldn't make it to his 92nd, but didn't think he would meet the criteria (he probably would have in retrospect) but after a fall (mom has dementia and was unable to realize how much more help he needed and we hated to interfere) my sister and I asked the doctor for it. On the way home from the hospital I asked Daddy if he knew what admission to hospice meant. He didn't so I told him that if he didn't improve, it was possible he wouldn't live more than 6 months. He was quiet but I don't think he was surprised. He wasn't opposed to the idea of having hospice come help.

Mom, like your mom, on the other hand, is not so clear cut. The only ADL she is independent in is feeding herself. She can't bathe herself, dress herself, toilet herself (though she tries), fix herself meals - I don't remember what all of the basic ADLs are. For hospice for dementia, one of the criteria is that they can't communicate coherently, supposedly less than 5 intelligible words at a time.

But I digress. My suggestion would be to ask for a hospice consult. If she meets their criteria for admission, welcome their help!

Hospice is a difficult decision because it means we accept that life is coming to and end, but life is going to come to an end whether we consciously acknowledge it or not. Reaching out and accepting the help that is available isn't giving up, it's giving your Mom the best qualify of life she has for the time she has left.

My heart goes out to you. I can't imagine how difficult it is for you to not be by your Mom's side while she's in the ER. Around here they make exceptions for patients with dementia like they do for dependent children. I don't know what I'd do if they tried to separate us if I had to take Mom to the ER. Prayers for you and your Mom.

It certainly won't hurt to see if your mom qualifies for Hospice at this time. I would imagine that she would, but all hospices are not the same. And unlike your dad, just because your mom would qualify for their assistance, doesn't mean that she will be dead within hospices 6 month guideline( My husband was under their care for 22 months.) For you it would mean extra sets of eyes on your mom, and to make sure she's receiving the care she needs and deserves at this stage in her life. Wishing you the best.

I am so sorry for your mom and you.

I would choose hospice for my mom at this point.

To much trauma and pain for her.

May God guide you through this and bless you with strength and wisdom.