Anticipatory Grief and Multilayered Guilt: What Do I Do?!?

CJJE

*NOTICE: This is a long read. Thank you in advance for being willing to take time to read all of this.*

I am a 31-year-old only child of a 78-year-old mother who was diagnosed with Alzheimer’s disease in 2018 but showed contributory signs of the disease in 2015. I am a part-time college instructor who has chosen to move back home with my mom to take care of her full-time. I have been her primary caregiver and attorney-in-fact since 2019. According to the seven-stage model, Mom is solidly between stages 6 and 7. 

Being an Alzheimer’s caregiver is such a dynamic experience, isn’t it? With all the ups and downs, there never seems to be any kind of stability, even when the progression of the disease temporarily plateaus. You automatically take on the roles of parent, personal accountant, legal advocate, confidant, nutritionist, home aide, teacher, friend, enemy, and counselor. You often have to forgo processing your thoughts and feelings because you prioritize your affected loved one’s thoughts and feelings as well as those of unaffected relatives and friends (by affected and unaffected, I mean “diagnosed” and “not diagnosed,” respectively). You deal with relatives’ unsolicited, uninformed opinions as they talk negatively about you behind your back yet don’t make any efforts to help and objectively have zero clue of the gravity of the situation because they never visit or directly observe day-to-day activities. At the same time, you deal with the same individuals’ anticipatory grief because the reality is they also have some sort of meaningful relationship to the affected loved one.

I’m at my wit’s end. I’m tired, angry, sad, disappointed, drained, and hopeless. It’s weird to be between the stages of grieving the First Death, which is death to pre-decline life, and anticipatingly grieving the Second Death, the actual physical passing. It’s frustrating to do every single thing I possibly can to make sure Mom’s well-being is in tact with integrity, but those who only see a fraction of a fraction of what Mom and I daily endure continue to be impossibly negative and ignorant. I’m angry that the long-term care system in the United States seems to be designed to take every single thing from you and the affected loved one, including either selling all assets pre-facility or risking an asset seizure post-facility/post-Second Death. I’ve talked to several senior care specialists, elder law and estate law attorneys, social workers, her family medicine practitioner, neurologist, prescribing psychiatric nurse, and her mental health counselor, and the conclusion is that time is not on our side in figuring out how to pay for long-term care without sacrificing an arm and a leg for Medicare and Medicaid to contribute. 

The simplest of tasks, such as raising her arm, is even a cognitively difficult request. She sleeps a lot. She no longer explicitly expresses hunger, thirst, emotions, or pain. Her motor skills are slowly but surely declining. She doesn’t know what to do with a phone or remote control or book anymore. She doesn’t know any identifying info about me or herself (I’m often her father or little brother but never her son). I’m struggling to keep my professional life organized and healthy and my personal life balanced. 

I feel so, so alone with limited solutions. The facts are I’m not a speech therapist, nurse, OT, or PT, and I cannot give her the 24-hour care she desperately needs. However, because of money, we just don’t have any other choice right but for her to stay home and for me to stay with her. Whether I choose to sell her paid-for home that’s on family land in order to qualify her for Medicaid or choose to keep her at home, I will always feel guilty. There’s always a give-and-take with these kinds of situations. That’s part of the reason that I feel weird when someone else says, “You are such a good son. She’s lucky/blessed to have you.” I understand and appreciate their sentiments, but I’m just doing what needs to be done, and I simply love and want the best for her. 

With all of that said, do you have any insight regarding how to deal with this kind of solitude?

M1

Welcome to the forum CJ, hopefully the community you will find here will help somewhat with the isolation.  I can vouch for that.

That's not such a long read, believe me!  You'll see that as you follow various threads.  You have summarized the experience of many of us very eloquently.  There is much to learn here, and many caregivers who can give you advice and suggestions.

I have one that came to mind as I read:  have you thought about getting a Hospice evaluation?  The rules are less strict for dementia than for other terminal illnesses (such as cancer)--and she might qualify, it might be one more source of help for you.  Not much to lose by investigating.  You do not need a doctor's order for it, you can investigate local agencies yourself and call for an evaluation.  Not much to lose, if she doesn't qualify no harm, no foul.

Good luck.  You have reached out for a good lifeline, I promise you that.

jfkoc

Hi CJJE,

I agree. It was not such a long post and it was easily read since you did break it into paragraphs. Thank you for that.

For openers, you are doing a good job. A great job so please, no guilt. 

I would be a good idea to interview several Hospices at this time. If your mother is accepted you as well as your mother will have additional help...both physical and emotional. Medicare will pay for this but not long term care.

It is also a good time to investigate Medicaid. I do not think selling the home and land will help to qualify her since there is a 5 year look back.

One more thought. Have you considered getting in some part time help?

King Boo

This is such a difficult journey, on so very many different levels, which your post adequately describes.

If I could suggest one thing, it would be to know your first, second and third choice of a skilled nursing facility - a place where you feel she would receive good care, and a place that would potentially have the ability to keep her for long term care as a Medicaid recipient.

The day will come when she has an illness and becomes weakened by the hospitalization and she will have a qualifying nursing home stay for rehabilitation.  In later stages, this is often your opportunity to place and in later stages, it is often because of need.

You are correct, no one is a PT/OT/ Speech Pathologist/Social worker/CNA/RN/palliative care/hospice nurse.  But we often need these services for our LO and this fact alone can drive the decision. Before that, it's exhausting.  

My mantra became : "Care needs drive the decision making.";   difficult though it was to leave out the emotions, aka the guilties (which really isn't guilt when you break it down, just over responsibility of children who dearly love their parent).

There are a lot of existential things that happen; if we internalize all of them as our fault, we will be the cause of our own demise.  

Your mother does not need her house anymore if LTC placement happens.  I am concerned that you did not see the correct elder law attorney if you are living in her home, because a Certified Elder Law Attorney would have explored with you other options; if the situation is correct, if a family member provides care for a 2 years period that keeps the person out of nursing home level care, the house may be gifted to the caregiver and that transaction is a non countable asset for Medicaid pursposes not subject to the 5 year look back.  But it has to be done properly with proper documentation.   www.nelf.org will yield a list of CELA's in your state.  Interview carefully.

In other words, you are paid for your care with her house, but she still qualifies for Medicaid and there is nothing to pay back with the house after her death.

As to family members - they often sling stones and malice because they are not dealing with their loss very well.  At a time when you could use love and support, you become the scapegoat.  Horrid.  Set boundaries when and where possible to cope.  

OnlyChild1970

CJJE:
Don't worry about being verbose--say what you need to say, and take as many words as it takes to say it. (I used to feel bad about using a lot of words. Not so much anymore.)

You've been navigating this for a lot longer than I have. (My mom was diagnosed in January, after a couple of months of decline in memory, cognition, etc.) I know the whole guilt thing, though--THAT one I know well. But you're doing the right things. There's no need for guilt, though of course that doesn't mean it won't continue. But the American long-term care system--the health care system in general--is, as I think we can all attest. pretty darn* broken. That's not our fault--we can only work within the situation we find ourselves in. If you know you're doing the best you can do, with the available resources--and it certainly sounds like you are!!--then try to absolve yourself of guilt, as much as you can. It's just another weight you don't need to be carrying.

My knowledge of elder law, Medicare, Medicaid, and the rest, could be fit into a small thimble, so I won't presume to speak on any of that. But I would suggest you get at least a few different opinions from various lawyers, if only so you can be sure you're getting consistent info. 

And as far as what the relatives are saying? Pardon my language, but: screw 'em. If they're not there with you in the trenches, dealing with the day-to-day stress of being a full-time caregiver, then they should keep their unsolicited opinions to themselves. And you're WELL within your rights to tell them so, should those opinions become uninformed, rude, intrusive, or otherwise unpleasant. When it all comes down to it, YOU are the one who is going through this with your mom. YOU are the one who's shouldering the burden. When THEY want to get in and dig with you? THEN they can talk--not before.  (Sorry--the whole "relative" question makes me pretty spicy. Not from my own experience--my mom took care of HER parents, back when I was in college, and the way her family treated her was....ugh. Makes me mad to this day, and Grandma and Grandpa have been gone for almost 30 years.)

Hang in there--I know, some days that's literally all we can do, is just hang in. You are doing a good thing, even if it doesn't feel that way sometimes.

Quilting brings calm

CJ 

You are not alone in your anguish.  We are right there with you.  Our families are messy.  We have no help.  Our emotions run the gamut of why me to anger to despair.   

What I am with you the most about is WHY do we have to reinvent the wheel?  Doctors are mandatory reporters for abuse etc.  why aren’t  they required to set us up with one point of contact for mental, financial, legal, and caregiving help for our loved ones.     Some of us can’t get our LOs or their spouses to sign the legal forms.  Some of us can’t get them to cooperate with needed changes for appropriate care.  Why do we all have to be left to wander in the dark to get to figure out What to do next.   Why do I have to wander thru the  phone book to try to pick out home health or hospice ( later on for us).  

Meg380S

CJ,

Your post was efficiently written, and I appreciate that. You put into words so many of the feelings I have experienced since my own mother's diagnosis. Particularly impactful were your feelings of grief.

I also live with my mom, though I am not an only child and my mom is married. Although I have my own living quarters in our family home, I see my mom and her declines daily. After her most recent decline into stage 6, my grief has become overwhelming. While those "your mom is so lucky to have you" comments are kind, it's clear that there is little thought behind those statements. Ask how I'm doing with it all, and I will you tell that I am not doing ok because I'm grieving not just my mother, but a living person. She's right in front of me, and I miss her SO much. For the few who have asked, my reply has been eye opening to how devastating this disease truly is.

As I tell a close friend whose mother also has Alzheimer's, I'm glad I'm not alone...but I'm so sorry you're also experiencing this. Same goes to you, and many others on this site.

All the best,

Meg

CJJE

Thank you for your reply.

My LO is now in stage 7, and she has been in a SNF about 4 months now. Hospice has been in conversation as of recent.

I do find comfort in this community. It helps me know I’m not alone. 

Peace to you. 

CJJE

Thank you for taking time to read, jfkoc. 

Mom has been in a SNF since May. Her elder law attorney was able to work out Medicaid for us, thank God. At some point, I did bring in temporary help, but none of it was consistent, unfortunately. 

She is late-stage, and I am in the process of deciding hospice care steps.

Peace to you.

CJJE

Thank you for your insight and advice and affirmation, King Boo. I was able to find a certified elder law attorney, and he was able to get Mom into a SNF without my having to sell her house or other real property. 

Mom has been in a facility since May now. We’re getting close to the transition, and hospice has been a topic of discussion. We are taking things one step at a time.

Peace to you.

CJJE

Thank you so much, OnlyChild1970. I had to actively decide not to allow unhelpful family members’ opinions to affect me. I have zero energy for any of it, to be honest. 

You are also not alone. Peace to you as you and your family continue to navigate this challenging journey.

DrinaJGB

After nearly 12 years of this the best advice I have is just hanging on I guess; any way you can.

And throw both the guilt and the meddling relatives out the window as fast as you can.

CJJE

Quilting brings calm, I totally feel you. It’s so frustrating to have to go to and fro just to get answers. It’s also energy-draining. I recognize that AD and other types of dementia are complex, but the process of accessing resources shouldn’t be.

Peace to you along your journey. You are not alone.

CJJE

Cooperhawk, I’m right there with you. It’s a painful, long “goodbye.” My heart goes out to you right now. So sorry you and your LO have to go through this.

Peace to you.

jfkoc

           " I’m just doing what needs to be done, and I simply love and want the best for her. "

That's it. That's all you can do. I do not believe that quilt is warranted when best is done.

Thank you for the update. Hope you will keep us in the loop.

CJJE

Meg380S, thank you for responding, and I’m sorry you are having to experience this with your LO. That question, “How’s your mom/how are you doing?”—it’s a lot. I often find myself just saying the bare minimum though my mind and soul say/feel otherwise. 

You are certainly not alone. Peace to you along your journey, Meg.

CJJE

I hear you, Drina. That helps to keep things moving, for sure. We’re taking things one step at a time. That’s really all we can do.

Peace to you.

CJJE

That helps to put things into context. Thank you so much for the reminder. I will definitely keep you all updated. I hope all is well with you.

mommyandme (m&m)

When I’m asked how my mom is, my answer:

“Well, she’s demented.” 

end of conversation

CJJE

Mommyandme, I will have to try that. Thank you for sharing! It encourages me as I figure out how to lessen the pressure of having to explain everything to everyone.

May flowers

I can relate to everything you’ve written. “The long goodbye” is very apt way of putting it.my FIL is here at our home with hospice.

I am learning that there are those who ask who really want to be a support and those who I think are just being polite. I’ve gotten to where I just tell people “he has good days and bad days”. The ones who care or really want to help will offer something like a meal, or clean my house, lol. My adult son and his girlfriend just spent the day doing yardwork for us, we didn’t ask, they just came and did it, bless them!

I know in my case this is not as hard for me as it is for my DH. I’ve only known my FIL for 22 years and it is nothing like what my husband and his siblings are going through - all the childhood memories involved, the man who was at one point their rock, is now so helpless. My DH has to call my FIL by his name because he does not respond to “Dad” anymore. Each decline like this brings another a small loss and grieving. 

I lost my mom to ALS and people tell me that is the hardest. It was hard in many ways, but I knew her mind was there, even to the end. I know she heard me and knew me even when she couldn’t communicate or move. IMO, dementia is MUCH harder on the loved ones.

irene912

https://alzconnected.org/discussion/55971/anticipatory-grief-and-multilayered-guilt-what-do-i-do

Hi, First, You are NOT alone. You say 'being a caregiver is a dynamic experience.' You are so right! I care for my mother & same thing, I'm sometimes her daughter, sometimes not. A lot I'm just a friend or caregiver or a person who runs the 'facility' she's in (which is my home). And what you say about relatives opinions is so true. Unless you are with them day in & day out, they don't know. Short visits & pleasant conversations are not 'experiencing' it. And they think, 'why do they say this is difficult, she seems perfectly fine!' So frustrating for sure. I'm grieving for my mom as well, so I understand all the feelings. Please reach out to anyone who will listen, on here too. Support groups are available, online too. Call Alzheimer's hotline, always willing to listen. Grab whatever free time you can for yourself & do something you enjoy, even if it's sitting quietly on the couch for 20 minutes. If you reach out to social services, office on aging, or whatever is available in your area, you may have already gone these avenues. God bless & good luck to you thru this journey & we are all here to listen.

Marta

To Irene: this thread is from 2021-2022 FYI.