A very long ending

Mainer1

In late December of 2019, my DW was rushed from her memory care facility to a local hospital as non-responsive.  I tried to stop the process as it was pointless and, had she awakened, would have terrified her, but got there just as the ambulance pulled away.  I followed it to the hospital where the ER physician looked at her, asked me a few questions, confirmed her DNR on file, and immediately referred her to hospice and a return to the facility.  He suggested that we had a few days . . . 

It is now March 23 of 2022 and she has been in hospice for two years, two months and 23 days.  She receives kind and loving care every day, and her hospice nurse is absolutely wonderful, but she has lost over 40 pounds, and now weighs 88 pounds (she is/was 5'8).  She hasn't known me or anyone else for well over a year, is non-ambulatory, may have broken her pelvis in a fall some months ago, lives in a constant hallucinatory state, and is costing what is left of our carefully planned retirement funds about $90,000 per year.  If she lives another year and half, we will be into Medicaid.  

I speak with her hospice nurse every week.  Two weeks ago she asked me what my last visit was like and I told her that my DW was entirely unresponsive and I was just destroyed for the rest of the day.  In the kindest of ways, she suggested my visits were likely not helping my DW, and were very bad for me and that I would be OK to stay away until a last visit which could come within a month or so.  

I corresponded with this site frequently when we first started down this path, and it was helpful.  It helps to share, and to learn what others have done to help their loved ones and keep themselves sane, but there is no helping with this kind of ending except to recognize that you absolutely must save yourself.  Fortunately, I have purpose in life, dear friends, a strong church relationship, and reasonable health.  A close friend lost her husband to AD last year and, when she called me, she said, "You know just how I feel."  I responded, "Absolutely -- you are relieved and feeling guilty about being relieved."  

Mint

I am so very sorry.  Glad you have people you can talk too.

June45

The long goodbye...this disease is so cruel to the loved ones and its victim. I am so sorry.

Crushed

please see someone about medicaid right now

Marie58

Mainer, I'm so sorry. I know how painful it is. My DH has been bedbound since Nov. Can't feed himself, is non-verbal, some days makes eye contact but some days stares off at nothing. He has little to no facial expression, is incontinent... The list goes on. He's been on Hospice since Sept. Visits are indeed hard. Sometimes I cry when I'm there and need to look away so he doesn't see me crying. 

  

I fear this could go on for a long time like your DW. 

My DH is only 66 and pretty healthy otherwise. I pray daily for God to take him home sooner rather than later. I don't know if that's right or not, but that's what I pray. He has no quality of life and often looks very sad. I'm glad you have friends and a church community. May God give you and your DW peace and comfort at this difficult time.

Battlebuddy

I’m so sorry you are in that spot. So sorry for your wife.

   My husband is bed bound on Hospice. He went on in July and became bedbound in September . I too am worried about a Long Hospice . It’s been 9 months. 

  My husband had a seizure 6 weeks ago , and another one a week ago. The Hospice doctor wants to put him on an anti seizure med. She wants to cure the seizures . I’m hoping he has a big one that takes him out. I don’t want him laying there for two years.  

  Please God , not Long Hospice.  

Ed1937

Mainer, you have done your job very well. I'm sorry it's still so hard.

abc123

I’m very sorry for both of you. My parents could be on the exact same path. If this continues there will be no funds left to care for my dad should he need it. This could kill all three of us.

Caregivers for mom will cost over $120,000 this year. Mom can only eat baby food now. She looks like a skeleton. We are turning her every two hours to prevent pressure sores. 

tjrjr

Mainer 

You are not alone dealing with the torment of the long goodbye. Jennifer lovely wife is bed bound at a nursing home and is slowly slipping away. Her(really mine) psychiatrist has told me that I need to move on with my life and not visit every day. Doctor is worried that if I don't I may never recoup from the depressing long grieving process.   Get yourself to an eldercare lawyer that specializes in medicaid. They will set up so you don't lose everything to her care. 

Tom

jmlarue

Battlebuddy - Can anyone explain the idea of Hospice wanting to give anti-seizure meds? Doesn't that seem like a "curative" treatment option as opposed to "palliative" care? I'm having a hard time interpreting which is which. My insulin dependent mother (for example) continued to receive her normal insulin doses in spite of the fact that she was unconscious and unresponsive for her final two months of life. Other family members (also diabetic) could never reconcile the notion that giving insulin wasn't considered interventional treatment.

Caring4two

Jmlarue wrote:  

Can anyone explain the idea of Hospice wanting to give anti-seizure meds? Doesn't that seem like a "curative" treatment option as opposed to "palliative" care? 

I am a retired RN. Hospice is all about keeping the patient comfortable at the end of their life. Seizures are not comfortable to go through. My husband developed seizures the last 6 months of his life. We added Depakote sprinkles (an anti-seizure med)  to reduce the number of seizures and make him more comfortable, not to extend his life.

Same with a diagnosed insulin dependent diabetic. You give insulin to keep them more comfortable. Death will occur when it’s time. Sometimes that’s a few months, sometimes years.  You do not withhold “comfort care” just because a person is dying or “hurry the process”. 

When my husband was struggling to breath at the end, we gave him some oxygen and high doses of morphine via IV drip. This again, was to make him more comfortable. None of this was going to prolong his life, just make the dying process more comfortable for him.

Hope that helps.

jmlarue

Thank you. That explanation does help. It's still a little confounding to understand what constitutes curative or palliative care. I know that antibiotic treatment is often withheld at end of life. as well as nutrition/hydration measures. My older sister (also diabetic with kidney failure) had a pre-directive not to administer dialysis. Absent a pre-directive on such things, it's left to the person with medical POA to make the best end of life decision on such things. There's the rub, since the tendency of the doctors/hospitals to advocate all manner of extraordinary measures to prevent death. No easy decisions for the caregiver with POA and no medical pre-directive.

Battlebuddy

Jmlarue,

   You did a good job of explaining exactly what we are going through here. That line between curative and Palliative care  . It’s something that can be tricky as things come up. I’m not trying to “ hurry the process” 

   But my husband is young ( 57) and was an athlete when diagnosed. I have thought long and hard about what we are going to do if other issues come up. It’s possible because he is in such good health, that he could be stuck in that bed for years and years. Also my husband told me that when he has problems swallowing to let him go. Easier said than done. But we are at the point that he is having swallowing issues. So yes I think about all the things that could come up like aspiration pneumonia. 

  When do I get to let him go as he asked? Will I have the guts to say no to antibiotics? Not sure . Right now we will treat seizures with Ativan. The doctor and I agreed. Later if they are more frequent we will discuss again . 

   No simple answers . It’s all us Health Care Proxy folks trying to stand in the place of our loved ones and do our best to carry out their wishes. 

   

jmlarue

Sending bear hugs and heartfelt sympathy for all you and your DH are facing. This is all so hard. For all we've had to go through, the one thing I hope against hope is that we will not have to live out the rest of our days with a burden of guilt or regret over the decisions we were compelled to make. I've cared for and buried both parents and two sisters over the past 10 years. In the immediate aftermath of death, it's hard not to dwell on the question, "Did I make a mistake in judgement?" It wasn't easy to let that go.

abc123

Dear Mainer, just wanted to say hello. You’ve been on my mind all day today. I hope you had a decent day.

Joe C.

Mainer, I sorry to hear of you struggle on this journey & I fear that one day I will be where you are today. I remember when you placed your wife and it certainly has been a difficult road. I hope you have the strength to deal with this final phase.

Mainer1

Thank you for the responses.  FYI -- we worked, together with an eldercare attorney before it was too late for my DW to participate, and we have a detailed plan in place.  Crushed is right -- it's critical to do this.

ButterflyWings

(((Mainer))), Sending you virtual hugs. It is so little, I know, but we are lifting you up.

I hope and pray your journey is not too much longer if that is not inappropriate to say. How very compassionate of the nurse, and I am glad you are accepting that "permission" not to torture yourself further with this terrible nightmare we cannot control nor easily exit from.

We joined this forum about the same time and I remember your posting during those earlier days. What an unpredictable twist of fate this disease throws at each of us every day, right? All tragic and tortuous, but in so many different ways. It really is true that when you've met one PWD, you've met one PWD. I am so, so, sorry for the hand that you were dealt and also for your DW. Although families' experiences and science say she at least is spared the awareness and knowledge of this long goodbye in the painful way that we caregivers experience, I still am so sorry you and your LO are going through this.

Jo C.

I am so very sorry for what has been happening.  It certainly is a positive to have such friends and other interests in your life to help buoy your spirit as best can be.

When you mention the impact on your finances, I wonder if you have seen a Certified Elder Law Attorney regarding 2022 Illinois Long Term Care Medicaid, which is different from regular Medicaid.

Here is a valid, quality link with information for an overview:

https://www.medicaidplanningassistance.org/medicaid-eligibility-illinois/

It appears that to qualify for Long Term Medicaid in your state, only the patient's income is counted; the at-home spouse income is not counted.

There is also a handy  number for the amount of savings an at-home spouse is able to keep without its being used for the LO in long term care.

Do take a look just to acquaint yourself a bit; and also, do consult an elder law atty.  In some states, if the monthly income is too high to qualify, there are special Trusts - called Miller Trusts or Qualified Income Trusts that can offset any of the financials that impact having Long Term Medicaid benefits.  An Elder Law Attorney is your best bet at this time.

In any case, my best wishes and warmest thoughts go out to you, please continue to let us know how you are doing; we will be thinking of you.

J.

extex

My wife has frequent UTI’s for which she is prescribed various antibiotics.  UTI’s can develop into very serious infections, sometimes fatal.  Is this treatment considered curative or palliative?

Jo C.

It straddles the two concepts.

Hospice, unless the patient is actively in the imminent process of dying, treats UTIs, pneumonia, and other infections.  It is about quality of life and patient comfort.  Honestly; the old saw about pneumonia being an old person's best friend is just that; an old useless saw. Pneumonia is NOT comfortable and it can be an awful situation.

If the patient is in the actual active process of dying within an imminent time frame, then such treatment is not given and other measures are taken to keep the patient as free of struggle, strife and pain until the death process is complete.

In all of this, it is important to know that Hospice, by law, is not permitted to intentionally do anything to purposely lessen the time of the patient's life to purposely hasten death.  Some of the comfort meds will contribute to that at the very end of life, but they cannot be purposely given earlier to push the patient to the end.

Also in earlier days in Hospice, if patient is doing fairly well, closely watch and assess the meds Hospice RNs are putting into the care plan to be given sometimes routinely.   Most Hospice RNs are wonderful and very knowledgable and in tune with med necessity and unnecessary use and side effects.  Other RNs are simply not as skilled or in tune.

I ran into this and it was startling.  The RN simply did not know enough and did not assess well and snowed LO and all sorts of negative effects ensued.  None of it necessary.  Had to advocate to spare LO  . As it was, we soon got a new RN by request and the problem was solved; LO did ever so much better and was comfortable.  Quality of life issue. 

J.

LadyTexan

I am so sorry Mainer and the others dealing with this very long ending.

DH started hospice on January 17, 2022. I am so very sad. This morning he told me he wanted to die. I told him that was okay and that it is okay for him to go. 

DH is bedbound. He speaks to imaginary people and speaks gibberish. His eyes are not focused. He sleeps about 20 hours in a 24 hour period. When he is awake he complains of pain. He is on a 75mCg Fentanyl patch. He usually get at least 1 ml of morphine daily.

The pain meds constipate him so he also takes what I refer to as poop potions. These include Miralax, stool softener, magnesium and fiber caplets. Because he is awake so few hours, it seems I spend most of the time changing him, cleaning him and trying to get him to take the poop potions.

Yesterday I thought about how miserable he is. What quality of life is there for DH, if all I do is stuff him with poop potions so he poops. I thought to myself, if this were cancer, we'd probably stop treatment by now. But its Alzheimer's. This disease operates on its own timeline. DH is still taking fluids, but he drinks little. 

My heart is hurting so badly to see him this way.

God please help us and our loved ones.

Battlebuddy

   Lady TEXAN, I so sorry. I think our husbands are very similar. Except for the pain. My husband doesn’t seem to be in pain. I’m so sorry your husband is. 

    Our “ quality of life “ time ( when he is awake ) is spent shaving, washing , and pooping too. He sleeps about 20 hours. 

    I don’t understand Hospice. I don’t understand what Comfort Care , and Quality of Life means when you get to where we are. Just very confused and a little discouraged. 

   I’m a woman of Faith and am going to do some praying and leave it all at Jesus’s feet. 

   I’m sorry Mainer that we kind of hijacked your thread. Can’t imagine what 2 years of this have done to you. I would say don’t go back except for that final visit. You must be just all used up right now.