From 6 to 7 in no time

BonnieALZ · July 13

BonnieALZ · July 13

MY SO was just evaluated for Hospice and approved. So here comes the team to the rescue. As the DH of the dementia patient, how did we go from 5/6 to 7 in a short time? How did I miss Palliative Care from 2023 ( when neurologist listed dementia as the findings) to at least three years later and I am the only caretaker. Doctors visits , Meds, Diapers, bathing, physical therapy ,etc. alone . No home nurse and no home help and not even a mention that the LW qualifies as soon as the neurologist post Dementia as a diagnosis .

If Hospice confirms and she is accepted ( because she was and is ) then who tells me how long and when should I look at 24/7 memory care stay? I agree that there is no hard 6 month period but I have been given the med prescription for the last stages. Hospice nurses should be able to give me a ball park estimate , correct?

Why do I ask? I want the best care for my LW. I do not want to try to be the all and everything because I cannot treat what i do not know of she cannot tell me is the problem. 24/7 care is my timeline to find the place that is 24/7 and not me with diaper in hand and nothing but a Hospice hotline. But I want her to be at home until she cannot and be better taken care of.

jgreen · July 13

Dear @BonnieALZ

I would have all questions ‘at the ready’ when Hospice shows up. They will have a better idea of where your SO is at present and may have options for you to consider. They may even have a hospice facility or wing at a local hospital or nursing home that could be an option. I know it is a process to visit and choose a MC and with you being the sole caregiver, how and when will you be able to tour facilities and make choices?

I do hope your SO quailfies and hospice is able to guide you through this difficult and emotional time.

God bless you for being such a warrior! Hugs! 💝

tonyac2 · July 14

It went super fast for us. Hospice sat down at my kitchen table and I explained to them my husband‘s behaviors and symptoms and I said I think he’s in stage six. The hospice nurse and Social Worker both said no, he’s in stage 7. In-home hospice began in April, and my husband passed away at home in June. That’s what our experience was like.

harshedbuzz · July 14

@BonnieALZ

For my dad, too, it seemed like the rate of progression sped up dramatically in the transition from 5 to 6 and then 7 after a very slow rate through earlier stages.

I'm a little confused by some of your remarks/questions.

How did I miss Palliative Care from 2023 ( when neurologist listed dementia as the findings) to at least three years later and I am the only caretaker. Doctors visits , Meds, Diapers, bathing, physical therapy ,etc. alone . No home nurse and no home help and not even a mention that the LW qualifies as soon as the neurologist post Dementia as a diagnosis .

IME, outside of oncology, pulmonology and cardiology, it's rare to have doctors refer to palliative care. That said, dad's gerontologist did suggest a palliative approach (limited specialist visits and meds that were "preventative" in nature) but that didn't come with Medicare funded caregivers or supplies. Most often supplemental care and respite are out-of-pocket expenses for the caregiver to arrange and fund unless there's a LTC policy.

If Hospice confirms and she is accepted ( because she was and is ) then who tells me how long and when should I look at 24/7 memory care stay? I agree that there is no hard 6 month period but I have been given the med prescription for the last stages. Hospice nurses should be able to give me a ball park estimate , correct?

Ultimately, you are the one who decides on when and if placement is the best option for your circumstances. Hospices do offer short respite care in a facility as part of their service, but I am unfamiliar with criteria around when you might be eligible if she's accepted into hospice. If your goal is for her to go to MC at some point, be aware that the vast majority require the new resident be ambulatory and able to self-feed on entrance to the community. If she's not, you may need to place her in a SNF if care at home is no longer possible or what's best.

HB

SDianeL · July 14

So sorry you are at this point. There really is no way to know how long she has. As is each dementia patient, each Stage 7 is different. I would place her sooner than later so that she gets 24/7 care. As others have posted, ask the Hospice nurse any questions you may have.

SecondStar · July 14

This is a tough, very tough situation and right away I will tell you that you didn't miss anything, jumps like that can and will happen with the brain. The brain functionally, is a contradictory nut- it's intimately connected yet insanely regulated and compartmentalized. You were not slacking, you did not screw up, that is just the way things can happen in the brain, years of steady manageable disease progression and then suddenly and particular node or "junction, crossroads, connected system loop" gets hit and then all of a sudden it's gets exponentially worse.

It wasn't you, please just take a moment with that. It was not you.

It's very difficult to give you specific information on the process in your state or the process related to any facilities, your insurance... all that jazz, because it can all be very complex and wildly different state to state, sometimes facility to facilitate…

that being a caregivers best compliment is being called a pain in the butt, what I would recommend doing is exactly what one of the other posters in here mentioned: having all your questions ready to roll, having sub questions ready to roll having questions you think are stupid- ready to roll. Get all your foundational information set, The very barebones basics of what's going to happen and then move from there, ask if they have any liaisons or caseworkers that you can talk to that can direct you step by step through the process. Your job right now is to accept their help and use it! You're already doing the difficult stuff yourself, this part doesn't have to be a nightmare when they have experts and professionals there that can show you what decisions are yours also guide you through just the basic progression of what usually happens when somebody changes facilities or goes into a facility. They've seen a lot: lean on what they know, lean on what they tell you and use that to make an informed decision

Honestly, your best weapon here is going to be just that, ask to talk frankly with them, build a good rapport. They want to help.The best thing to do is make it easy for them.

I hope this helps. I have been where you are right now and you are doing an amazing job, you really are. I know the crushing... just force...of what is your day-to-day life and the fact that you're handling it like this and you're asking these questions with care, speaks to your character.

BPS · July 14

Where I live I was told that Palliative care provided consultations with the pcp but not be hands on. I felt like that was no real benefit. I contacted hospice and there are different hospice companies in most areas. They came and I asked questions and they have been a great help they are not there everyday but the hospice nurse is knowledgeable and there is a great lady that comes and helps with showers or cleaning which are both great for my wife and there is a chaplain that I can talk to about my feeling and that helps a lot too. I wish they could give me some kind of time frame but at this point they can't. I don't like it but I get it.

BonnieALZ · July 18

Thanks to all supporting comments - Hospice arrived with multiple visits- Three nurses and caretaker social worker and Chaplin - I have started the( outside of hospice ) in home care and now I have jumped to getting the few days of 4-5 hr ( me time) to get in a few visits to MC and likely get on a wait list - The question to myself is the same question to the nurses of hospice and that is "does the LW symptoms suggest I move that direction sooner or later - OR do I just do what I keep doing and find a SNF when the end is in site?" Difficult to even ask the question but that is the unknown and that is the place I am in. Just do not want to try to be the complete solution for the LW when I know the experienced facility can provide better care and comfort -

Jgirl57 · July 18

Glad hospice approved. I asked about palliative care for my DH and the doctor referred me to the SW and I feel like they discouraged it. I am going to seek it again

BonnieALZ · July 19

https://alzconnected.org/discussion/comment/277692#Comment_277692

I actually asked AI from Google on the DW behaviors and was directed to the DW med provider on a urgent visit due to complications. The MED provider sent the referral and, in a few days, the hospice nurse arrived and stated that the DW was just a bit on the edge of Palliative care and Hospice but approved the Hospice based on the DW meeting at least two of the elements - It was Google AI that educated me on what the med provider and neurologist would or did not

CindyBum · July 19

Every experience is different, of course, but my DW hung out in Stage 5 for about a year, then moved from Stage 6 into Stage 7 in a matter of one month. Then lasted only a couple of months in Stage 7. She was always one to run through everything at the speed of light.

Hospice was a life-saver for me, but I feel like I nearly lost myself completely in that last year of keeping her at home. I was prepping myself to move her to an MC in 2026, but it all went so fast at the end, I didn't really have time to even do it. That brings me some peace now, knowing that I was somehow able to make it through so my DW could pass peacefully at home. It wasn't my goal to have that, but I like now that it did happen that way for her, despite how far to the brink that took me psychologically and emotionally.

When to move someone is really up to you. There's no real predicting on how they'll progress, but what you do know for sure is how you feel. Are you ready? Are you too exhausted at this point to continue being the main caregiver? Is the 4-5 hours of respite enough /day to keep you going?

Big hug.

BonnieALZ · September 19

And now it has been a bit over two months since DW was placed in hospice . This last 6 weeks has been difficult but I see her fear in her eyes. Since that started I guess I found myself knowing a part of her I never realized. She just wanted to be with me. I guess there is a safety bond to a caregiver even if that caregiver is a spouse.

I had to decide how long is too long. If she does not get assessed for acceptance in a MC facility then how much care would I be able to provide.

As I made all the tours to most of the "close by" MC facilities I learned much.

1st there are more than I thought there would be within 10 miles. I do NOT live in a major city or metropolitan county. I am in a surburban area.

2nd The bets ones are full and have a waiting list

3rd the large facilities that are corp ran have issues with staffing and the ratio of staff to residence is not so good.

4 I got lucky- Found a family owned smaller facility that was highly rated and very close. Has a high ratio of staff to residence( 17 residence) , state recognized as a top level facility , only has MC residence and was not over priced for a private room.

The DW was assessed and accepted - She has been there for almost a week.

What was the deciding factor to place her in a MC?

As I toured a large facility and spoke with the sales person, we discussed what the DW did throughout the day while living at home. Well, I could only say "not much" because family were rarely there . I had to take care of her and the house so I had limited time for fun and activities. She could not drive and did not like to ride with others . And so forth. The response was " So , she has been missing out". Meaning : being with others and activities and well prepared meals and fun night and party nights etc. To top that off, my experience with paid in home care agencies have been negative. Changing people and no shows and just a person that watches my DW sleep.

The DW has been moved in. She seems to have better days than worse days. She eats well from a fresh cook kitchen. All of the staff are engaging.

What do I expect after today's visit? She does not have long . She is slipping away and If i had waited a month longer , the DW would likely have to be placed in a skilled nursing home. There are not too many of those nearby and they are not close to quality.

Summary. The DW is as close to home with pictures in her private room and well trained staff that shower and feed her and NOW i can he the husband in my visits. Yes, she cries happy tears and some sadness but she had that at home. The difference is I also get some rest and I can work on the home and yard and still see her .

The ending ? It will happen sooner than I want. I will likely move on with life without her happy or sad tears. I will miss her more than I ever would think for a while . I have a wonderful spiritual support group and I have been blessed though God's grace . I have worked hard for what I have and been conservative in spending. I can afford the high cost of MC. I will find a way to move into a smaller home and live alone as I have done in the past before the DW and I were one.

What will happen after the funerial is a guess but the same family that were either in denial or just did not want to be a part of this sad journey will not be any closer to me so I will lose what little connection I would have had when the DW is gone.

On a more positive note: I could have missed the pain but I would have missed "The Dance"

I have a paid up LT care policy -All that I ever need- A long career and full life -no debt -A trust that will take care of me- - The trust that will leave what is left behind to my Church and my Christian High School and yes, even some for those that were so distant- UNLESS I EDIT IT …

Life can be tough

BUT

God IS GOOD !

Lethe · September 19

https://alzconnected.org/discussion/comment/282557#Comment_282557

Thanks for the update. I’m happy to hear you found a place you both like and that she is doing well. The memory care place I toured last also told me not to wait too long as then my DH might need skilled nursing and might not qualify for MC. We are not there yet but it was good advice.

BonnieALZ · September 19

FYI The assessment from here indicates Must be Ambulatory - Able to stand and sit with little assistance

Sit by self on toliet

cannot be bed ridden

My DW was at that edge .

on my visits I see other residence that look like and act like stage 4 and 5 - Even though I keep the DW at home through that tough part of wandering and aggitation I am glad I walked with her through those months.

There is nothing wrong with finding a place well in advance. Having them place the SO on a waiting list even if you asked to be skipped a few times - They would reassess once you know that day has come.

Prayers to you

Keep the faith

From 6 to 7 in no time

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