mom dementia and hospice --questions and prayers please

[Dznypal]

last year we needed to place my mom into assisted living shes 88 and has dementia--we tried keeping her in her own house as long as we could--her dr said it was no longer safe for her to live by herself any longer

as we found a really nice assisted living she didnt accepted it too good in the beginning but with the dementia getting worse she really dosent say much anymore about it

I talked to the nursing supervisor and she wants to have a meeting she said its no emergency they just want to make sure theyre giving mom the care she needs

even though Im POA for health my brother and sister in law are going with my DH and myself my DB is POA for finances but we work together

so now tonight I get a text from DSIL how said when my brother talked to nursing supervisor she mentioned hospice now I know this is more or less an end of life--this is the part where Im getting scared

my mom really isnt doing that well however shes really been going downhill in the last few yeas--her personality has changed--

sorry for rambling on its just that Im quite upset just hearing the word hospice

I guess if anyone has any experience on hospice I would greatly appreciate it

thanks

 

[ronandannette]

last year we needed to place my mom into assisted living shes 88 and has dementia--we tried keeping her in her own house as long as we could--her dr said it was no longer safe for her to live by herself any longer

as we found a really nice assisted living she didnt accepted it too good in the beginning but with the dementia getting worse she really dosent say much anymore about it

I talked to the nursing supervisor and she wants to have a meeting she said its no emergency they just want to make sure theyre giving mom the care she needs

even though Im POA for health my brother and sister in law are going with my DH and myself my DB is POA for finances but we work together

so now tonight I get a text from DSIL how said when my brother talked to nursing supervisor she mentioned hospice now I know this is more or less an end of life--this is the part where Im getting scared

my mom really isnt doing that well however shes really been going downhill in the last few yeas--her personality has changed--

sorry for rambling on its just that Im quite upset just hearing the word hospice

I guess if anyone has any experience on hospice I would greatly appreciate it

thanks

My own beloved mother went the same way. Hospice care in the context of a nursing home is nothing dramatic. Basically what they will want to confirm at the meeting is whether or not you are ready to stop all forms of active treatment going forward and sign a DNR. Comfort measures like pain relief, oral food and drink and all necessary forms of hygiene and personal care will continue. She may be moved to a specialized ward/wing of the facility and she will also likely to be able to have visitors 24 hours a day if that is not already permitted.

What this means in practical terms is that although they will treat her if she fall and breaks bone or something, they will no longer be doing diagnostics and administering things like antibiotics for infections or IV fluid or nutrition. The lives of people with dementia often end with a UTI or pnemonia and they stop eating and drinking. I'm sorry to say it but if your DMom gets to this stage, you will likely be praying that she goes quickly and peacefully; you will not regret having withdrawn active treatment. I'm so sorry you're going through this - many of us understand all too well.

 

[OhhBother]

I worked in the post-acute care industry for several years. There are many misconceptions about hospice. It does not necessarily mean your loved one's death is imminent. We had patients who were on hospice for several months. Hospice is about providing comfort measures for the patient and support for the family. It's a great resource, and it's a shame when families wait too long to take advantage of it. It can be a tremendous help for the entire family.

 

[fly girl]

First, I am sorry. Having a loved one with dementia is very hard experience. Watching them shift into a shell of the person you once knew is heartbreaking. I have dealt with it with my Grandma. She passed from a stroke after 3 years of being in the "memory ward" at an assisted living facility with dementia. In the end, naturally I was sad ... but I was also relieved. She was alive, but not living. I am glad she was no longer suffering.

My FIL went in and out of hospice a few times. This was a shock to me because before then my understanding was hospice meant final days, as in single digits. Hospice can mean up to six months. He improved (and lived another year) so they moved him back to his original place. (His assisted living sounds different from @ronandannette mom in that he was moved to a different facility miles away.) Keep in mind, he wasn't suffering from dementia, but had multiple strokes and his cognitive capacities were extremely poor. So my best guess is your situation will likely be more on track with ronandannette's. I hope so, that sounds so much better. The moving him back and forth was very difficult, and I wish they chose a different facility to begin with. I hated his place. But as I am only the in-law, I had no say.

You'll have to talk to the nursing supervisor to see what she recommends and what hospice will mean to your mom. Again, sorry you are going through this.

 

[ronandannette]

I worked in the post-acute care industry for several years. There are many misconceptions about hospice. It does not necessarily mean your loved one's death is imminent. We had patients who were on hospice for several months. Hospice is about providing comfort measures for the patient and support for the family. It's a great resource, and it's a shame when families wait too long to take advantage of it. It can be a tremendous help for the entire family.

My DBrother spent his last 3 weeks in a stand-alone hospice facility and it was a literal god-send for all of us. Thank you for having done this important work.

 

[ronandannette]

First, I am sorry. Having a loved one with dementia is very hard experience. Watching them shift into a shell of the person you once knew is heartbreaking. I have dealt with it with my Grandma. She passed from a stroke after 3 years of being in the "memory ward" at an assisted living facility with dementia. In the end, naturally I was sad ... but I was also relieved. She was alive, but not living. I am glad she was no longer suffering.

My FIL went in and out of hospice a few times. This was a shock to me because before then my understanding was hospice meant final days, as in single digits. Hospice can mean up to six months. He improved (and lived another year) so they moved him back to his original place. (His assisted living sounds different from @ronandannette mom in that he was moved to a different facility miles away.) Keep in mind, he wasn't suffering from dementia, but had multiple strokes and his cognitive capacities were extremely poor. So my best guess is your situation will likely be more on track with ronandannette's. I hope so, that sounds so much better. The moving him back and forth was very difficult, and I wish they chose a different facility to begin with. I hated his place. But as I am only the in-law, I had no say.

You'll have to talk to the nursing supervisor to see what she recommends and what hospice will mean to your mom. Again, sorry you are going through this.

We've had experience with two different types of palliative care - I assumed the OP's mother would stay in her facility since she is already in a long-term care place. That's how it worked with my Mom. My brother entered a stand-alone hospice in a residential setting at the end stage of his cancer. Both facilities were appropriate for the circumstances but the place my brother went was simply amazing. It's been 4 years and I still tear up thinking about the expert loving care we all received there.

 

[fly girl]

We've had experience with two different types of palliative care - I assumed the OP's mother would stay in her facility since she is already in a long-term care place. That's how it worked with my Mom. My brother entered a stand-alone hospice in a residential setting at the end stage of his cancer. Both facilities were appropriate for the circumstances but the place my brother went was simply amazing. It's been 4 years and I still tear up thinking about the expert loving care we all received there.

My FIL was also in a long term care facility, but it was no where near as nice as my Grandma's was. Granted cost of care was a lot more expensive where my FIL lived, but the night and day difference really was upsetting to me.

I am not sure the moving back and forth is normal, especially for patients with dementia. That would be horrific for someone suffering with that, and I can't imagine the stress it would put on them. It does have me wonder, maybe FIL's facility did have hospice care but only for those in the memory wing. I just cannot see completely changing the environment on a person with dementia. I remember the last time we took my Grandma outside of the facility (to my Dad's house, that she knew very well) how upset and stressed she was afterwards because everything became foreign again. It truly was a punch in the gut knowing she'd never see the outside world. However that was a few years before she passed so maybe as the dementia progresses the change wouldn't be so stressful. I am sure it is different for every patient.

 

[flyingdumbo127]

and prayers to you, Dznypal.

 

[Meriweather]

I'm so sorry. It is hard to go through.

We had that happen with MIL.
She went into an assisted living place that also had a medical apartment section to it.
After awhile she was switched to that. Excellent care and they took really good care of her.
Then it was hospice. She was there for quite a while before the end.

Best wishes

 

[QueenIsabella]

Hospice is generally recommended when the patient has ~6 months or less to live. Obviously, there's no way to know for sure, but I would trust the nursing home's judgement on this--they've seen many cases of dementia, and are in a position to both observe your mother, and be more objective than you are about her needs.

As others have said, hospice can be a godsend--we used it in a different capacity when my dad was terminal, but they'll work with the nursing home to give her appropriate care and access to meds/medical equipment that will make her more comfortable.

What the nursing home is telling you is that your mom is nearing the end of life, and there are steps you can take to make the end easier and more comfortable for her. I'm sorry that there isn't better news. You need to mentally prepare yourself that her time grows short. You also need to think long and hard about if life-prolonging measures (drugs, CPR, a ventilator, a feeding tube) are worthwhile.

My mom had dementia, and reached the point where she could still chew and swallow, but could no longer bring food to her own mouth. She no longer could speak, let alone recognize anyone. My sister (who had POA) and I had a long, teary discussion about "Do we give Mom a feeding tube, and possibly let her live another 10 years, or do we skip it, and let her starve to death?" we were fortunate, sort of, in that our mom died before we had to make that awful choice.

Prayers to you and your family. It's not easy.

 

[C&Jx2]

I worked in the post-acute care industry for several years. There are many misconceptions about hospice. It does not necessarily mean your loved one's death is imminent. We had patients who were on hospice for several months. Hospice is about providing comfort measures for the patient and support for the family. It's a great resource, and it's a shame when families wait too long to take advantage of it. It can be a tremendous help for the entire family.

This.


I’m sorry you and your family are going through this. It’s so difficul.

 

[indimom]

I'm a hospice nurse. I just wanted to explain a few things that have been mentioned, and clarify some common misconceptions.

The "six month" term is relative. In order for insurance to cover hospice, we have to be able to show that there are signs that the patient has six months or less life expectancy. This does NOT mean that is always the case. This is not an exact science, we base the determination on criteria we can document, but the timeline is very individual. We have had patients continuously for 2-3 years in some cases (although this doesn't happen often). They were in end stages but held on there for a long time, so we were able to continue their care (we reevaluate periodically). Occasionally, patients stabilize and we can no longer give evidence that they have six months or less, and we have had to discontinue hospice care. In most cases, these same patients have come back to us six months or a year or two later and stayed with us until they passed.

Hospice is about "comfort care." Another poster said we discontinue labs and iv fluids and nutrition. That isn't entirely true. What is a comfort to one patient may not be for another, so sometimes what happens with one patient may appear to be the way hospice works to family. But every patient is an individual so care is individualized.

We do use antibiotics for UTIs and upper resp infections if it will provide comfort (and it often does). So this is not unusual. BUT, This can vary - there are patients who have UTIs chronically and are asymptomatic, we may not administer antibiotics for that. We have patients who become very confused and even combative with UTIs, we do administer antibiotics for them. It's a comfort measure for them.

We do use IV fluids IF they will provide comfort. As an example, we had a younger patient with large wounds that led to a lot of fluid loss - they could tolerate the fluids (because their cardiovascular system was still strong) and this helped balance out the losses and made them feel better and bought them some more time - we used fluids. BUT, and this is an important factor, for some patients providing fluids can cause worsening symptoms and we would advise against that. It depends on the circumstances.

We occasionally do labs - urinalysis and INR are the most common, but sometimes bmp or others IF the results will allow us to treat symptoms to provide comfort. IF a patient or family do not want blood draws, we don't have to do these tests. And as a patient nears the very end stages, most medications/labs/antibiotics are discontinued because they would not "help" in any meaningful way. It's all about comfort and where they are as they near the end of life.

As for nutrition. Most of out patients choose not to have alternative nutrition (tube feeding) initiated as appetite declines and, in my opinion, this is a good choice. As death approaches, all body systems start to slow down, including the digestive system. Attempting to "push" nutrition when these systems are slowing down, will only cause discomfort/nausea/vomiting, and NOT comfort.
For those patients who already have a feeding tube in place, we carefully monitor their response to intake to make sure they can tolerate what is being given, usually we are slowly decreasing the volume. In some cases, we have had to discontinue completely as the patient simply could not tolerate it at all.

Sorry for the novel, I just wanted to explain a few things that are often misunderstood.

Basically, all the care we provide is about making the patient as comfortable as possible and to allow them to live their life as they see fit for the time they have. We also help family (for those patients in the home) learn how to provide appropriate care for their loved one. We are not about "death" or taking away care from a patient, we are about managing the symptoms that come at the end of life and helping patients and their families as they go through those natural changes.

OP - if you have a meeting, bring several family members. Ask any and all questions. Take notes. You do not have to commit to anything you are uncomfortable with. And just because they want to talk about comfort care doesn't mean that the end is near. They may just be wanting to see what your thoughts are about providing CPR in a crisis; or, how aggressive you want to be if she has a sudden crisis (like do you want to use intubation vs. just oxygen, etc.). These are decisions we all can and should make but are very important for patients with a progressive condition like dementia.

Prayers of comfort as you go through this difficult process.

 

[mnrose]

Indimom, thank you for that excellent explanation. It is so helpful. Hospice is a godsend. And, something I'm glad is becoming increasingly available. We all want to leave this world as comfortably as we can. My FIL was on hospice at the end of his life, and those nurses (in a nursing home) were the best, most kind people.

 

[Dznypal]

thanks so much for all the kinds words and reassuring replies about how hospice works

I always thought of hospice as end of life and you dont go into until that time starts--nice to know theres other reasons too

I especially grateful to you indimom for your easy to read and understand explanation--that helped a lot

Im still very nervous about this meeting on mon but feel slightly better
thanks all

 

[Pea-n-Me]

Indimom Excellent explanation.

Dznypal: I’m sorry. My mother is currently in hospice care, but just I and my family are caring for her at home. A hospice nurse comes out to the house and evaluates her once a week (a Medicare requirement) and as needed if we have any issues. They’ve been super helpful getting us whatever we need, and they’ve given me support and guidance as well. Little by little we’ve gotten more and more equipment so her living room is now almost like a mini hospital room.

I was intimidated about the word hospice a bit, too, even as a nurse myself (as it is not my own specialty). One thing I have learned/am learning, is that this is all much more difficult when it is your own parent. And as a caregiver myself, and one providing all of her care, the lines can get blurred. They talked to me about trying to be just the daughter if possible, but in my case it’s not really possible. I’ve had to so far see her through three bouts of pneumonia and two UTIs, which required every skill I have, as well as a deep decline since she became debilitated. Hospice has been involved just since September. Seeing Mom unable to breathe was tough. We managed to get her through, but it wasn’t easy. Each time I have to decide whether to treat with antibiotics or not, and the decisions are getting harder and harder.

I think one of the hardest things for me is scheduling appointments. Visits aren’t on a set schedule. They call or text some time during the day to set a time, and are often late getting here. That makes it kind of hard for me as I often wait to run errands or something and then have to wait up to two hours from when they said they were going to be here, although I do understand how and why it happens. (Visits with someone else took longer than anticipated, and I respect that.) This is in large part why I elected not to have an aide come because they have the same system in place for times. It’s hard enough for me one day a week, I don’t want to do it for five. (I still work and have a busy life.)

But honestly it hasn’t been too, too hard, with a few exceptions, providing Mom’s care ourselves. She is a pretty good patient. My daughter is a senior nursing student who commutes to school, and my husband is super helpful, having seen his own mother through hospice at home as well, though the lion’s share of the care falls to me. Last night, although she hasn’t been speaking much, Mom looked me straight in the eye and said “Thank you”. It made me cry. She knows and appreciates what we’ve done for her and that she is fortunate to have gotten to stay at home.

As late as this summer, while Mom was still actively seeing doctors and getting treatments, they said she did not qualify for hospice (we had been referred by our primary care), but she could get palliative care services. So there can be some confusion about services and who does what and when, etc. Hospice, though, at that time told me that their services would kick in when Mom was no longer seeking active treatment for her disease. As others have said, they can still provide some treatments (and honestly I don't feel qualified to say exactly what, and I suspect agencies can probably differ a bit) but those are aimed at comfort, and not cure.

I am most familiar with patients who pass in the hospital. They are not on hospice, perse, but comfort care has been instituted. I have always tried to give those patients of mine the best experience possible, and I’ve had hundreds of patients and families in this situation over the years. This stage of life is very important to me and deserving of much respect. But that is still very different than what I’m experiencing now.

I am least familiar with how hospice services would work in a care facility (although I did stay with my aunt who had dementia in a facility while she passed, but hospice wasn’t involved). I would say that she will have a hospice nurse involved in her care to see that she gets everything she needs from a comfort standpoint. I think it can likely only be helpful to have that extra layer of care involved. But not much may change on a daily basis. I concur that you probably need to start, as hard as it is (and if you haven’t already), to think about issues related to end of life with your Mom, and how she wanted them handled, knowing you, as best you can, will support her wishes. I have had to think a lot when making decisions about her care of what it was that my mother wanted, and not necessarily what I want. There are some articles online that help with this, and our hospice agency gave me reading materials which I continue to refer to when I’m unsure or torn about things.

Most of all a big for you! Know that there are many others in the same situation, too, or have been in the past. It is a challenging time, but can be fulfilling as well knowing we helped make things as good as they can be at the end of a loved ones life. It is never easy losing them or seeing them suffer.

Comfort is a worthwhile goal of care at end of life.

 

[Dznypal]

what a beautiful reply pea-n-me it actually brought tears in my eyes--

this is a very hard time for myself and my siblings 2 of which live out of state--so bascially its just my one brother and myself trying to handle this--my sister in law has been great in all of this--she can handle my mom and get her to do things I could never get her to do--she just a way about her--but then I get all emotional when my mom yells at me-- whereas my DSIL just lets it roll off her back I know she cant help it--my mom has never yelled at any of us kids even though we sometime did things where she should have--so this is a totally different side of my mom

that for sure would have me in tears where you said about your mom looking at you and thanking you--

right now my mom feels like were out to get her--shes mad at all of us but says Im the worst

I am feeling better a little bit--that word hospice just got to me--

but thanks to all of you sharing your experiences

take care

 

[HopperFan]

YES, VERY IMPORTANT you ask questions, very specific questions about exactly what they will do and how often, how it will impact your role in her care, what it means if you pursue additional medical care and why the facility wants their input. Talk to her doctor and have them help you plan. I would also call the state agency and get full description from them on what to expect from letting them participate in her care at her location and if the company is registered and approved by them. There are not too many questions you can ask.

I have hesitated to respond because our experience with hospice was not positive, it was really bad. It is hard enough to watch loved ones go through this. Know your rights, her rights, stay on top of everything and question every single decision. And if you aren't happy or comfortable with the care or employees, tell them to bring you a release form to discontinue their care and find someone else you are happy with.

 

[Micca]

I'm very sorry Dznypal, try to hang in there

 

[gwynne]

what a beautiful reply pea-n-me it actually brought tears in my eyes--

this is a very hard time for myself and my siblings 2 of which live out of state--so bascially its just my one brother and myself trying to handle this--my sister in law has been great in all of this--she can handle my mom and get her to do things I could never get her to do--she just a way about her--but then I get all emotional when my mom yells at me-- whereas my DSIL just lets it roll off her back I know she cant help it--my mom has never yelled at any of us kids even though we sometime did things where she should have--so this is a totally different side of my mom

that for sure would have me in tears where you said about your mom looking at you and thanking you--

right now my mom feels like were out to get her--shes mad at all of us but says Im the worst

I am feeling better a little bit--that word hospice just got to me--

but thanks to all of you sharing your experiences

take care

I am so sorry you are going through this. Sending prayers.

 

[ronandannette]

what a beautiful reply pea-n-me it actually brought tears in my eyes--

this is a very hard time for myself and my siblings 2 of which live out of state--so bascially its just my one brother and myself trying to handle this--my sister in law has been great in all of this--she can handle my mom and get her to do things I could never get her to do--she just a way about her--but then I get all emotional when my mom yells at me-- whereas my DSIL just lets it roll off her back I know she cant help it--my mom has never yelled at any of us kids even though we sometime did things where she should have--so this is a totally different side of my mom

that for sure would have me in tears where you said about your mom looking at you and thanking you-
right now my mom feels like were out to get her--shes mad at all of us but says Im the worst

I am feeling better a little bit--that word hospice just got to me--

but thanks to all of you sharing your experiences

take care

This is not a uncommon phase, it was so shockingly uncharacteristic for our Mom, and that made it even more painful, I think. She could be combative with everybody but for some reason she was hardest on our sister - the person who least deserved it. Grace and peace to you.