Seeking end-of-life advice

BKay

This is my first post, but I want to first off thank everyone from the bottom of my heart for the advice and comfort I've found here by reading your posts, usually when I can't sleep at night and am feeling overwhelmed.

I'm writing now because I'm so anxious about my 77-year-old mom's imminent passing at home from dementia and my dad's reluctance/refusal to get outside help, as in palliative care, hospice, etc. He has been caring for her at home for the past 13 years, refusing help from anyone except me and not seeking medical care. He is the epitome of the stubborn, independent, proud, private individualist. My husband was diagnosed, also with Alzheimer's, in 2017 at age 57, so we moved near my parents, enabling me to help care for my mom while also caring for my husband. Mom is now sleeping much of the time, with little to no cognition. Several times, she's stopped eating and drinking for a day and had seizure-like episodes, making us think it was the end, only to rally and get back to "normal." 

I have asked my dad repeatedly to set up at-home hospice or some sort of palliative care so that we will be able to give my mom pain medication if she is in pain when she does pass. He keeps putting it off and trying to placate me by saying he'll do it next week, etc., and then he doesn't do it. I know that he's hoping she'll pass peacefully in her sleep and he won't have to deal with having a stranger in their home telling him what he should do. He doesn't think she will be in pain when she finally goes.

Meanwhile, I've read all I can about the dying process so at least I'll know something about what's going on and how to help. But I can't prescribe morphine. Will paramedics administer pain meds if I end up having to call an ambulance (against my dad's wishes) if she's struggling at the end?

I really don't know how likely it is that she will pass peacefully without the need for medication. I'm going to insist that he call the doctor on Monday and if he doesn't, call someone in palliative care to see what my options are. I'm extra anxious now because my mom hardly ate anything yesterday.

If anyone has some advice for me based on your experience, I would really appreciate hearing it. Thank you.

Michael Ellenbogen

The first question I would have is what were your moms wishes?

King Boo

Unfortunately, you cannot count on all physicians to understand the benefit of hospice.  It's poorly understood even by the medical community.

The best determination would be a hospice evaluation by a well known, good hospice agency with a long established good reputation.  Via this method, the evaluation involves counseling and education to family members about what hospice is. This might bring your Dad around.  

 The conversation approach can make a difference.   "Mom deserves to be as comfortable as possible.  Did you know in the dying process you become dehydrated which results in a lot of aches and discomfort?  If we have a hospice nurse to come in we can know we gave her the best care and comfort possible.  I'm calling just for an evaluation."

"Did you know that Medicare pays for hospice services?  They must really help people for that to happen (It's over $5000 per month and you and Mom earned this by hard work during her life.  Let's take advantage of it!)

You are going to have to be the one to make the call with Dad's reluctant OK

Paramedics called to the house will result in her going to the Emergency Room, where full on medical treatment will be administered.  

Another option to consider is whether there is an inpatient hospice facility that Mom can go to for the few finals days of life.  It's not a long term solution but she would have the benefit in her final few days if she could get in.  But you'd have to have everything set up in advance, and generally the admit is already on in home hospice services for best outcome.

I am sorry you are in such a distressing situation.   Sometimes having a non family member discuss this with Dad is the best way to go.  The hospice nurse doing the eval would be perfect.

dayn2nite2

Paramedics will probably not give pain meds because the patient would need to be evaluated by the emergency room before anything like that is administered.

I know it's easier to describe your father's behavior as "proud, stubborn" but really it's neglect.  He is not doing the best by her by withholding care like that.

When you think of it in this context, does that make you more emboldened to tell your father "I'm not helping again until you get hospice in here."  

You can also appeal to his sense of fear by telling him that legally, he would be better off having additional eyes on her and her care, because allowing someone to have seizures without at least consulting with someone is neglect in a broad sense. 

What would he do if you stopped consulting with him and just called a hospice for an evaluation and were there while they were evaluating?

mommyandme (m&m)

I’m so sorry for these struggles.  Unfortunately dying is painful, especially when slow.  Some times people think morphine brings on the death when IMO it actually allows the person to finally feel at peace and able to leave.  

Hopefully your dad will come around before you can visibly see the pain in her face and clenched jaws as she succumbs. The regret of not allowing pain meds for your LO could last his lifetime.  I hope that doesn’t happen.  

I can’t express how sorry I feel for your situation.  I hope you and yours can feel some comfort and peace soon.  

Daughter80

Prayers for you and all of your family members. What a long and hard journey you have been on. I cannot recommend hospice enough. Maybe you could say you will call to set it up and give it a trial?  Maybe once he sees the care he will be on board. Do you think he would trial it if you set it up?  Everything we put in place for my dad as he was dying started as a “trial”  Hospice was amazing and made what could have been only a horrible situation and helped me see the beauty in the last months and days I had with my dad. They helped us keep him comfortable and offered counsel for all of the family members. They helped us see each other’s sides and even, I believe, helped us stay together as family. My dad was remarried and there was a time I thought that I would never speak to my step mom once he passed. They also were still a resource after my dad passed. The nurses and social workers we had were seriously a life line. I’m sure you have heard things like this and this is why you are hoping to get your dad on board. Maybe even have them come “just for you” Maybe your dad would allow the help of he knew it helped you?  Just ideas. Please keep us posted. And praying for you all.

BKay

Thank you all for your replies and helpful advice. My mom never could acknowledge her dementia, so she never expressed wishes beyond her fear of going to a nursing home, hence my dad's decision to care for her at home all these years. I've explained to my dad that all we need to do is have a quick video visit with the doctor (whom she saw once four years ago at my insistence to just get on file at a clinic) for a referral to hospice, and then we could schedule a meeting with a hospice nurse and request just palliative care as needed. He agrees with it all in theory.

He won't agree to her being moved to a facility for her final days. He's been completely devoted to her care day in and day out for so long. I think he has some denial that she's actually going to pass and it could be very difficult.

I'm committed to do whatever it takes to get the very best situation for her.  

Thank you again for the caring advice. I appreciate each of you very much. 

loveskitties

So a dementia patient you don't need a doctor referral to have hospice.  You contact them directly and they come to do an evaluation of the situation and either accept or reject.  If more than one in your area, you can always go to another for another evaluation if rejected by the first.

Does your father understand that for in-home hospice there is not someone there 24/7?  They schedule visits to assess the patient, provide comfort meds and bring supplies/equipment as needed.

It may help him to see things differently.

dayn2nite2

Call hospice yourself.  You don't need a physician referral.

Please change your perspective on your father.  He is willfully obstructing needed evaluation and care for her.  This is not love, denial or whatever you are thinking it is.

sandwichone123

I agree with day2nite2 that you can call hospice yourself. If you call an ambulance they will not give pain meds but will transport to a hospital where she is at risk of being intubated, tube fed, on a ventillator, and still dying. Hospice would be such a blessing to you and your dad, and after you had called them and they evaluated they would be able to show him how they could help. The hospice staff is very calm and supportive and my (very private) family never felt invaded or bossed around.

Rescue mom

This sounds terrible beyond belief, and I feel so badly for you. But what day2nite said is right. Have you considered that your father has lost cognition himself; that he is not able to realize what is going on? But what he is doing is simply not right. Your mom deserves care and a pain-free journey—which is absolutely a doable thing, if your father does not prevent it.

You know “next week” or “tomorrow” from him means nothing. (I heard that from my DH with Alzheimer’s until our house literally collapsed). As others said, this is not kindness. Even if it’s pride, it’s not caring, should his pride be causing her pain?

abc123

Dear BKay, 

Welcome to the forum. If your mom's death is imminent, she should be under hospice care.  Please check her carefully for any signs of bedsores, they are extremely painful. Your dad's refusal for hospice care could be viewed as neglect. I'm also dealing with a stubborn dad who did NOT want to bring in help/strangers. I called hospice anyway. Once he meant with the RN and the social worker, he was actually glad to have them. My mom's quality of life is much better even though she is in stage 7. She is steadily declining but her death is not imminent. I'm sorry about your husband having alzheimer's disease, especially at such a young age. That's very sad. Does your dad acknowledge the fact that your husband is ill and you are worn out? I agree with the others, it does seem as if he is having cognition problems of his own. I am very sorry you are having to deal with so much at the same time. Please keep posting and let us know how things are going. Does your dad have a sibling or a close friend who could persuade him to call hospice? If not, I suggest you calling. I take a lot of BS from my dad on a regular basis, but I draw a line where my mothers comfort is concerned. I wish you the best in this situation.

  

Linda_Miami

I would call Hospice myself.  The worst that can happen is that your dad will be upset with you (probably temporarily), but your mom will be given the care that she needs.  IMO, that is more important.  From what I have read and watched on YouTube videos, there is some pain involved in the dying process.  I am pretty sure your mom would want morphine.  Hugs.

harshedbuzz

Consider this another vote for a self-referral to hospice. You can't count on, nor do you need PCP "permission" to arrange this. I would call several and ask specifically about how they handle PWD and what their services consist of in these COVID times when staffing might be sub-optimal. 

There is the concern about your mom's wellbeing if she refuses to cooperate with dad's vision for a movie ending death in her sleep- she could develop bed sores, panic from struggling to breath, drown from complications of pneumonia. There's also a kind of person who almost "holds out" to die in a moment when the person closest is not with them which can prolong a difficult passing. 

There's also your dad's emotional wellbeing to consider even if he won't. Death with pain or terminal agitation can be ugly to behold. It is not a memory onto which you would want your dad to hold after all these years as a faithful caregiver. 

My dad did die in his sleep. But in the days leading to his death, were not easy. The DON at his facility agreed and ordered a visit from the affiliate PCP who ordered bloodwork, an X-ray and feeding evaluation. Dad wasn't eating much at this time, but he was still chatty, self-feeding, partially continent and ambulatory. The sound of his breathing and speech will stay with me for a long time. I was disappointed my mom wouldn't come with me to visit that day, but I am glad she was spared that part of the experience. 

We didn't bring in hospice; they were scheduled to evaluate him 12 hours after he'd already died. Consequently, my mother got none of the emotional support from which she could have benefitted during the time before (explaining the process and preparing her for his passing) or after (most hospices have counselors and chaplains available). 

Wishing you peace at this difficult time.

HB

HB

King Boo

I know I already posted, but I have been reading the thoughtful replies from many that followed.

And brooding a bit, to be honest.  I had one parent die a pretty horrible death, without the benefit of hospice services, and one parent with maximum benefit from 5 months worth of hospice services.

While both deaths were difficult to process, I will tell you that I definitely had some PTSD from the first.  The dying process is very difficult to watch and experience, even if you are endowed with the knowledge by support of hospice professionals about what is going on. Which I was not.   Respiratory stridor, known as Cheynne Stokes breathing, takes it's tolls on the observing family members.

I had some trauma and nightmares that re-occurred after the passing of my second parent, because the difference between the two deaths was staggering.

Struggling with the fact that I did not advocate or know enough to help my first parent took a long time to get over.

Having your Dad mad at you because you called hospice in to evaluate has the potential to pale in comparison compared to the feeling you may experience after her death if you do not attempt it. 

To a certain extent it is out of your hands what happens after the hospice evaluation, but just as happens with the elder law attorney knowing how to talk to our parents, hospice professionals are used to myths and misconceptions and may very well achieve what you cannot. 

I thought long and hard about doing a second post, but did want to weigh in with a view from another stage.

abc123

Hospice has been and still is a tremendous blessing to my dad and me as we navigate our way through this journey to take care of mom. Dad has bonded with the RN and the social worker from the hospice company. During the times that I am away at my home out of state, these women make sure that both of my parents are safe. The CNA from hospice accomplishes more in 30 minutes to an hour than the caregivers from Home Instead do in 12 hour shifts. 

Please call a couple of hospices in your area so your dad can meet them. Hopefully he will change his mind. I wish you the best. Hang in there. 

BKay

Thank you all for sharing your own experiences and thoughts on this.

 I called the home care service at our clinic this morning and spoke with a wonderful woman named Kay who explained our options clearly and in such a caring manner, it did me a world of good just to talk with her. I guess the rules vary on this, but here we do need a referral to access hospice, at least to the hospice connected to our local hospital. 

Kay told me we have two options: have a video visit with the doc and ask for the referral to hospice, or, if my dad doesn't want hospice at all, to ask if the doc would prescribe concentrated liquid morphine for us to have on hand for comfort care. She explained that the hospice option would be, of course, better because for one thing you have access to a hospice nurse by phone 24/7. She also said the hospice will pre-register with the coroner so you're on file as an expected death. She said we'll want to have our doctor do the pre-registration with the coroner if we don't go with hospice. 

When I explained all of this to my dad, he was glad to hear it, thank God.  He said let's get the doc visit set up. What he needed to hear was that he can access only what he feels is necessary comfort care through hospice, not the whole realm of counseling, frequent visits, etc. And he also wants to have the access to a hospice nurse by phone 24/7. So we have a doc appointment tomorrow.

I'm relieved beyond words. Some of you worried about his mental state and possible neglect, but it really is an extreme self-reliance and distrust/pessimism about medical options when it comes to dementia. He has given my mom phenomenal, loving care at home. Thank you for the encouragement to keep pushing, though - I was ready to go to war with him over this, but now I don't have to. Blessings to you all. 

mommyandme (m&m)

BKay,

So glad to hear your update and your dad’s acceptance of the possibilities.  

Thoughts of peace being sent your way. 

Daughter80

Wonderful to hear that you had someone that was helpful, learned all you needed to do and most of all that you didn’t have to fight your dad. What a blessing. Thank you for sharing. Prayers for you all.