mom dementia and hospice --questions and prayers please

[Lilsia]

I am sorry about your Mom. I completely understand how hard this is. A few months ago we had to put our grandmother (92) in a home. She has moderate dementia and has gone down hill very quickly also. She mostly just lays in bed and does not want to do anything. Some days are better then others. And yes, it does affect their personality sadly. I agree with others that say to ask any questions that you have. It is not an easy thing to be going through and it is even worse when you don't know the procedures and what her day to day will look like. I can't help you with hospice since we are not there yet. But I will keep you in my thoughts.

 

[tvguy]

It really depends on the patient. I have known people who were in hospice care for 6 months or more. My mom was diagnosed with lung cancer on a Monday and had a stroke 2 days later that put her in a Residential Care Facility for the Elderly for the last 13 months of her life. She was find on Sunday afternoon, but by Monday afternoon she had taken a dramatic turn for the worse. Dramatic enough that we consulted her Doctor about Hospice care at 1 pm, and the medical supply company got there at 5 pm just as she passed away.
So it can be hours or months when hospice care is needed.
In my mom's case, she passed away 9 days after her 90th birthday, which makes me wonder she wanted to make it to 90, and then just gave up.

 

[Pea-n-Me]

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

Aww...

Thank heavens for great sisters in law! Try to follow her lead. Granted, she's not as invested as you are, with this being your mother, so those words to you sting more, but you have to remember in the moment that she is not in control of her faculties and sometimes people act out to those they feel safest with - even if she may not be able to say your name, somehow your face and whole being are still imprinted on her brain. That's been my experience, anyway. Try to ignore harsh comments and just sit with her and hold her hand or place your hand on her arm to help calm her, if that helps. Whatever you can do.

My mother did not have dementia but in her decline has had many moments of confusion and lashing out at us. She's had fresh names for all of us so sometimes we just laugh about it because that's all we can do. (And DH is great at getting her and all of us to laugh.) Physical care of others can be undignified and uncomfortable, and that's where I think a lot of it stems from. I just remind her that it's necessary for her care and that we'll try to be careful and try to finish as fast as we can, but yes, yelling and name calling can be part of this even when people normally would never say such things. I think we have to just try to overlook it because we can imagine how it feels to be in their shoes, and it's not a place any of us would choose to be (but they're stuck with it).

 

[indimom]

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.

I'm so sorry your family had a bad experience. I'm glad you shared because it is important for everyone to know their rights and that hospice is a choice and you can refuse at any time to pursue more aggressive treatment (it isn't a final decision), or ask for another agency, or a different caregiver if the care is not what you expected or wanted.
Thank you for sharing your experience.

 

[Dan Murphy]

So sorry you are going through this, Dznypal. My prayers are with you, your mom and family.

 

[Sue M]

I think hospice varies state to state. My mom was in a small assisted living facility in Florida. When Hospice care was suggested to me I too thought it meant my mom only had weeks to live. But she was one who was on hospice for a few years. She needed full care and her hospice team was wonderful.

My moms cousin was in California in an ALF and was put on hospice care, but she was taken off in 6 mos sadly. Then passed away 5 mos after. Totally different than moms care. Florida was much better for care.

Our experience was much like what indimom explained. She was given antibiotics when needed, etc. The team went to her in her ALF. She didn’t have to move. It was a wonderful service.
We just lost her to Alzheimer’s in October.

I‘m sorry for your pain, it’s so difficult to watch, all the changes in personality, behaviour, until they no longer know who you are. I kept my mom in her home as long as I could with care coming in for 10 hrs a day. Until she started locking them out. I live in Canada so I was dependant on outside care. I was very fortunate to find a wonderful small ALF that gave great care.

 

[Karlrob]

Sorry to hear about your Mother and the now current situation. My mother was in a nursing unit and near the end they put her on hospice. Actually, she got better care on hospice. A dedicated person came to check on her, bath her, help her with her needs. It was a very helpful (for her and us) experience to have at the end. Actually hospice doesn't always signify an immediate end. Two of my friends had relatives put on hospice and they were taken off. The relative improved, or at least didn't get worse, so the hospice was removed until needed later. We found it a very positive experience. Knowing that the end was near, it helped us to know that she was getting good medical care. Best wishes for your family.

 

[kdonnel]

But she was one who was on hospice for a few years.

Hospice steps in once the patient or family has decided to stop seeking a cure. My father was under hospice care for a year and a half. In the beginning they came just once a week but as his cancer progressed they came daily. Hospice is focused on patient comfort and is much more free to prescribe medicine to accomplish that goal.

 

[smokeyblue]

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.

We did not have a good experience with hospice for my dad. I think they were understaffed and spread too thin. My dad didn't get very good care at all and the social worker was very annoying and intrusive.

 

[FlightlessDuck]

My daughter worked as an activities assistance for about 8 months in the memory unit of an assisted care facility. It was a specific unit for residents with dementia and/or Alzheimer's. It was separated from the rest of the residents and locked down for extra security. These residents were not specifically considered in "hospice" per se.

Now my daughter is the resident Music Therapist for a hospice that cares for patients in their home and in facilities, including the one she previously worked for. While not all of her patients have dementia, I know at least some of them do.

From what I understand, when it comes to dementia, hospice is something you look into when it becomes obvious that your relative is rapidly declining. Hospice is all about making the patient as comfortable as possible with the least amount of pain as they transition. It's about proving the best quality of life possible for the last few years of life.

If the nursing supervisor brought it up, I'm sure there's a reason for it.

 

[Allison Joy]

I don't think I have any advice or anything factual to to add to what has already been said. I just wanted to say I'm so sorry. I lost my dad to Lewy Body Dementia a year ago yesterday (Dec. 28). It is so, SO hard to watch a parent face this decline.

Hospice can be a scary word, but think of it in this way... Hospice is really just laying in place what you probably know already needs to be done, before it's too late. It's never something we WANT to think about, but usually it's the step we knew we need to take, and we just need some encouragement and help in taking the next steps (yeah, that paragraph was probably a bit redundant...)

***Disclaimer of sorts*** Below I share my dad's story, which isn't so much hospice related, just his... progression, which was fairly quick in the end, and I don't want you or anyone else to be discouraged by it.






For my dad, he had been declining slowly for a few years, mostly on the cognitive side, but, physicaly, was doing farily well... Walking on his own most of the time (though unsteadily), getting up with assistance, etc. But then he had a fairly rapid decline. He had a fall in October (didn't break anything, and no stoke, heart attack, etc.). which began his rapid decline. My mom cared for him in our home, with the help of the AMAZING support he got through the VA. We were amazed at all that the VA did for us, considering my dad served during peace time, and had no service related disabilities. They provided us with a ramp, wheelchair, hoyer lift and hospital bed, as well as in-home health care. There is no way we could have cared for him at home like we did without that assistance. In a way, I think it was a good thing that my dad passed so quickly after his fall, because my mom wouldn't have been able to keep it up at home for much longer, even with the help we were receiving.

 

[earsaddict]

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 MIL also had dementia and was placed in a nursing home when she was 75. She was not there long when we heard the word hospice and panicked. They explained their use of the word as putting her in a program to provide her comfort. Extra care and comfort.

They did the best they could to give her comfort. As you know, providing comfort to a dementia patient is quite a challenge. She did have other health issues and we watched her decline very quickly. She left us this past March, not quite a year after entering the nursing home.

All this to say that we were grateful for whatever comfort she was able to get from her last months. Please know you aren’t alone and I’m thinking of you and your family. I hope you are able to gain peace in knowing that your mom will be receiving comfort care. As others have mentioned we all have different experiences with how long our loved ones have been in hospice care.

 

[jodistrock]

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 father just passed 1 month ago (on 12/3/19) & he was on hospice. I would not have had it any other way & infact tried to get it 2 months prior but he was not ready (they have criteria). He went downhill fast.

I am also a Nurse Practitioner. I encourage Hospice always when it is appropriate & I start out by explaining that no one likes to hear that word. In essence though, I see it as really great home health care.

My father & I have talked many years about what he wanted. I explain it like a "birth-plan". He had a plan on how he wanted things to be & I was to facilitate that as best as I could because there are so many scenario's. Not like euthanasia but Dying With Dignity.

That being said, let the hospice staff guide you. The do know what's best & can help you make the best decisions for a beautiful death. They were great & can provide support with everything involved.

 

[AJA55]

This whole thread has been very helpful. Thank you.