Visiting my mom at her Alzheimer’s care facility
As a birthday surprise last month I took my dad to visit my mom for a window visit at her Alzheimer’s care facility. My parents haven’t seen each other, face to face, for at least nine months due to COVID restrictions at both my parents care facilities. When we arrived at the facility we sat outside, in the chairs at the visitation window, and waited for the staff to bring my mom to the window for our visit. After a few moments, a nurse came outside and told us we could go inside and visit my mom in person. Huh? Say what?
As we walked into the facility the nurse explained to me in hushed tones that my mom had lost consciousness a few minutes ago, but was now awake. They weren’t sure what was happening, but wanted us to come inside and visit. Mind you, the facility is currently shut down to visitors due to COVID. The ONLY reason family members are allowed into the facility is for end of life visitation.
Something isn’t right-Is my mom dead?
As we walked up to my mother, who lay slumped in a chair, all I could think was “Oh my God, she’s dead.” Simply stated, she didn’t look alive. They gently roused my mom, and gently guided her back to her room and helped her lay on her bed.
The nurse pulled me aside to discuss the situation while my dad was talking with my mom. I moved back into my mom’s space and noticed my dad looking very uncomfortable as he stood at the foot of the bed. I grabbed a chair, placed it next to her bed, and told my dad to have a seat. My mom lay on her side on the bed, slightly curled. I asked, and she responded, that she was cold. I grabbed a blanket from the closet and gave it to my dad and nudged him to cover her up and tuck her in. It is such a strange situation that I need to nudge my dad to care for my mom.
I haven’t seen my mom, face to face, in over a year
We “visited” with my mom for about 30 minutes. It was good to see her in person. I haven’t been in her physical proximity, where I could touch her, since January 2020. I touched her shoulder, I touched her leg. She seems far too thin and disheveled. How can this be my mom? Was she this thin and disheveled the last time I was close enough to touch her?
The irony is so thick that it’s laughable. We’ve spent a massive amount of time here in Colorado caring for my parents during the past year. The one thing my mom always wanted was for us to visit. We did visit a lot in the past, but the past year, whew, we’ve kicked it into a whole different dimension. Yet, my mom remains unaware of the amount of time we’ve spent here.
Facetime visits with my mom
Noelle and I generally have a FaceTime visit with my mom once per week, but we only see her face, so this in person visit was new territory for me.
The visit wasn’t a “good” visit if I only look at the context of the conversation. My mom was angry that she couldn’t leave the Alzheimer’s facility. She doesn’t understand why she’s there, and doesn’t realize that she’s been there for almost a year and a half. She picked at my dad, dissecting his words, throwing anger towards him in gigantic buckets. I found myself questioning the benefit, to my dad, of a face to face visit. Yet, is it my place to start asking these types of questions? Who am I anyway? They’ve been married for 63 years, an entire lifetime that they’ve spent together. The time I spent with them, in their house, is just a short blip in the span of their relationship. Who am I to begin asking these types of questions? Who am I to begin making decisions for them?
Weekly FaceTime calls 
Window visits
As we visited, my mom was annoyed that I was wearing a face mask. She told me several times to take it off. It’s a tricky situation. When we’ve been able to visit my mom through the window, I’m wearing a mask when she’s brought to the window. I’ve read her lips, many times, as she asks her caregiver/escort “Who is that?” as she’s walking towards the visiting window. So I know that the face mask makes her facial recognition, of me, more difficult. I also know that COVID has been in her facility, recently. One of the caregivers recently passed away from COVID. It’s horrible.
I kept my mask on for the majority of the visit. It was odd, the recognition that it would help my mom if I removed my mask, yet that action would place myself, and those around me, at a higher personal risk. When my dad and I left, I touched my mom on the shoulder, told her that I loved her, and that I’d see her soon. Even though she was awake, she didn’t respond.
Trying to explain the situation to my dad after visiting my mom
I tried to explain the situation to my dad as we sat in the car in the Alzheimer’s care center parking lot after visiting with my mom. I didn’t think that he really understood the current situation, as it existed at that exact moment in time. I’m not certain I understand the situation. What is this situation? Married for 63 years, yet separated at the very end. Where is the mercy?
How do I really explain the situation to my dad? I may have more eloquent speech, but the reality is that he lives with the situation every day. I’m just a visitor trying to put bubblegum into all the leaks that the dam is sprouting.
Trying to explain the situation to my friends
I was sharing with a friend about moving my mom into a memory care facility. His strong push back caught me off guard. “I would never do that. My mom would live with me and my wife.” I asked, gently, how that would work. Would you quit your job to care for your mom? Would your wife quit her job to care for your mom? How would you manage the full time needs of an aging parent with the short term financial needs of your household? He had no answers.
I decided that the decisions we’re making are so personal to our situation, and individual, that there isn’t any universal answers that apply to all families. I’m just trying to survive this chapter with as much compassion and joy as possible in my journey with my parents. Yet, I find the joy in this situation to be fleeting and difficult to find.
the whole dang “adventure” thing…
As I write this I’m driving back to Colorado and Noelle is flying to Oregon. We just finished an internment service in Louisiana for Noelle’s parents. I’m headed back to Colorado to move my dad into an assisted living facility and Noelle is headed to Portland to be with one of our daughters as our daughter has surgery.
Noelle and I discussed, ad nauseam, quitting our jobs and setting forth on a few years of “adventure” while we were young enough to do whatever we wanted to do. We recognized the age of our parents being a risk factor, but we didn’t account for how their rapid heath changes would impact our plans.
It’s now been two years since we left our jobs. I’m guessing that during the two years away from our jobs, we’ve spent over a year in Colorado caring for my parents. Somehow, this wasn’t how we planned to spend our time.
I’m so incredibly grateful that we’ve been able to spend all this time caring for my parents, yet, I’m also incredibly sad that we’re not able to do our own thing. I suspect that later in life I’ll have a different perspective, but today, I just want to howl at the moon.
Noting a cognitive issue with my dad
I spoke with my dad in October and gave him specific examples where I could see he was was having cognitive issues. I wanted him to go to the doctor and get it checked out. It was a very challenging discussion. This juxtaposition of parent child roles continues to catch me flat footed each time we have a conversation of this nature. We scheduled an appointment, and Noelle and I returned to Colorado. One appointment led to a series of other appointments, each separated by a month or so. We’ve left, and returned to Colorado so many times that I’ve lost track.
When did I become so tall? 
Beets!
Noting my dads cognitive decline results in my becoming even more involved with his day to day living. It’s not a complaint, but more a statement of fact from my own perspective. The time investment to handle my parents finances, health and living environment is staggering.
The role of siblings
I find myself questioning where my siblings fall in the “care equation”. I have a sister who lives close to my parents, a brother on the east coast and another brother on the west coast. The relationship between my sister and my parents is strained. The relationship between my east/west coast brothers and my parents isn’t ideal either. When we began this final journey with my parents, I assumed that it would all siblings on the “support deck”. The reality has been that this isn’t the case. I wonder if all families are like this. Does one child usually end up as the primary care partner for their aging parents?
I find that being unemployed, or “on a sabbatical”, results in the discussion of the caring for my parents with my siblings to be much more difficult for me. My siblings can, and do, say something along the lines of: “I have a job and bills to pay, I just can’t stop what I’m doing and come take care of mom and dad.” I understand this logic. Yet, when no one comes to help my parents, what choice do I have, other than to care for my parents? It’s a deadly little emotional trap, this extended sabbatical.
When my dad asked me why I think my siblings aren’t really engaging in his and my mom’s support, I think I surprised him with my response; perhaps not in a good way. I shared that initially I thought that I wasn’t being a good enough communicator, not sharing enough, not being honest enough, etc. I was doing something, either directly or indirectly, that was causing my siblings to not engage.
I’ve come to the conclusion that while I may have a small impact on my siblings engagement levels, ultimately, the real issue is a relationship issue between my siblings and my parents. I can’t answer for my siblings, all I can do is the best that I am able to do. What my siblings do, or don’t do, is on them.
What’s next for Noelle and I?
Last month Noelle and I were at the beginning stages of exploring the possibility of hiking the Continental Divide Trail this year. We’ve now scuttled those plans. The time investment that’s required in Colorado to care for my parents removes the possibility of a six or seven month thru-hike. We have no idea what we’re doing next. No idea at all. Our financial advisor is shooting clear warning shots across our financial bow. We planned to take two years off work, and we’re arrived at that point in time. There’s not much ahead for Noelle and I except hard choices.
Moving my dad into assisted living
During the past year and a half I’ve had many difficult discussions with my dad. Most have been fairly unpleasant topics. Funerals, end of life, estate, financial, advanced directives. We’ve attended scores and scores of doctor visits where we’re flipping the parent child relationship on its head.
After a series of general practitioner visits and neurology visits, spread over the span of four or five months, the official feedback is that my dad is suffering from a significant, non-age related, cognitive decline. After a plethora of very challenging discussions with health care providers, a social worker, and staff members at my dad’s current independent living facility, I made the decision to move my dad to an assisted living facility.
In the past, I’ve tried to work with my siblings on a plethora of items concerning my parents. Typically, my brothers remain mute and my sister can be fairly non-committal. This time, I didn’t ask for input. I’ve just made decisions based on my own intuition and judgement. It’s both easier, and more difficult. The cheese stands alone, eh?
I spoke with two of my remote siblings, separately, this week to discuss the results of my dad’s MRI. Their advice was to leave quickly after moving him into Assisted Living and to get on with my own life. How exactly does one do that? How do we care for our aging parents and still care for ourselves? I think that I understand their perspective. They’re not here, they’re not really involved. Distance lends perspective, but I think it also easily lends itself to disassociation.
This isn’t healthy…
I’ve shared with my siblings, many times, that this situation isn’t healthy for me. It overloads me on every possible level. The situation has consumed both Noelle’s and my life.
It’s just so much pain, heartache and suffering. Even as I try to plot a path “forward” for my parents, it’s really all about death. That’s the stage of life that I’ve been living in since checking my mom into the Alzheimer’s facility in December of 2019. Preparing for their deaths, separated and lonely, missing each other terribly. It’s grim. It’s overwhelming in every way imaginable. I find myself pondering my own death more and more. I suppose it’s natural, but it just seems like death is all around me, all day, every day. Where does their God fit into this situation? Where is His mercy?
I think I’m existing in this strange mental location of pre-breavement. My folks haven’t died yet, but, in many ways I think this stage of their living is more challenging to me emotionally than their deaths will be.
Bill and Estelle
Hard discussions
This week my dad asked again why he needed to move into an assisted living facility. I explained that we needed to “set him up” in the same manner that we “set up” my mom. In a facility that will provide him the level of care he needs, regardless of the engagement level of his children, for the rest of his life. I find that my anger level with my siblings is increasing. I’m literally setting my dad up for success based on my suspicion, based on past precedent, that my sibling won’t care for him.
As I look at what “the rest of his life” really means, the finances are challenging. I met with a financial advisor a few months ago that I hired to handle my dad’s investments. With Assisted Living facilities costing substantially more than Independent Living facilities, his investments will be exhausted, sooner rather than later. The advisor was inquiring as to the possibility that all my siblings would contribute cash if my dad runs out of money. I estimated that myself and one of my siblings would cough up cash if needed.
The advisor recommended that Noelle and I speak with our own financial advisor and plan for this possibility. We did speak to our advisor, and she actually told us that this situation wasn’t as unique as we might think. (Oh, our own financial advisor also mentioned sharing the cost among siblings, and laughed and told us to enjoy that “challenging family discussion”.)
I shared with my dad, that if he outlives his savings, his children will step up to the plate. I’ve assured him what a blessing it would be for us, his children and grandchildren, if he’s still with us in another five or six years. Yet, I wonder, would it be a blessing for him to still be alive and suffering from the separation from my mother for another five or six years?
So here I sit, on the cusp of moving my dad into his new assisted living facility, and I just have to be honest with you and say that, no, I’m really not doing OK.
How are you doing?
Steve,
Thank you for your brutal honesty. I remember watching my parents deal with my paternal grandmother’s failing health and lack of care she received in the nursing home where she was placed, we (6 of us) lived in a 1300 sq. ft. 3 bedroom house. Several years later, my dad left the family in California and took a job on the east coast, he left behind four angry teenagers, his wife and his mother. My mother still picked up my grandmother every week after church on Sunday. My grandmother berated her for not being a better wife, ect. My mother’s response was always “poor old soul, she just wants to be near her only child”, I was impressed even if I was an angry teenager.
Now seeing something similar in my future with my mother. Not an exciting thought.
You are doing a great service to your parents. I can only imagine the weight of bearing all the stress without your siblings participation.
Know that you and Noelle are in our thoughts and prayers, we love you both.
Amen
Sounds like your mom was dialed in! I hope to have this kind of grace when confronted with challenging family situations.
Too often I just chalk it up to someone being an asshole instead of trying to understand why they’re behaving in the manner that they do.
I’ve been surprised at how many folks we’ve met, or chatted with, who have something like this with their parents on their near horizon. I guess if we all live long enough, the odds are that situations like these will visit almost all of our families.
Thanks for sharing with us!
Sorry man. It sucks.
I ad a somewhat similar situation with my mom, then my sister, though nowhere near the level of emotional entanglement, time impact and potential financial impact. My older brother – the asshole, with whom I hadn’t spoken in close to 20 years – was MIA (of course – he was a garbage human being). I felt some obligation to my mom (with whom I’d had mostly negative interactions with during our lives), and (later, during my sister’s ending medical issues) felt more obligation to my sister.
In both cases I was the ‘successful/good’ child/sibling, and so it fell to me to act to meet needs. I resented it mightily in the case of my mother.
Mom wound up penniless (of course, she squandered everything during her life) but in a fairly nice place run by a Lutheran organization. They were saints. But it wasn’t home, and she was used to having things her way, and she resented being there, didn’t like the food, etc. and, later, began to exhibit a violent form of dementia. But the staff hung in there for her.
I visited weekly, driving into hated Seattle to do so. The visits were perfunctory and short; I had no positive emotions to share with her. I was retired, but caring for E during the day, so in a sense I had more time to give. But I resented every moment spent dealing with the situation. I wondered – recognizing my attitude – “When she dies, will I feel guilty for not giving more?”
She became progressively more upset, more-frequently violent, and ultimately was assigned a minder that stayed with her every moment that she was awake. And the place was only being compensated by her Social Security. Like I said, they were saints.
The day came when she demanded a transfer. I made a mistake: I said OK. And found the only other place within 30 miles would 1) take her, and 2) wasn’t a group home for the developmentally disabled (my little brother is DD and has been in group homes for 50 years – I know them well. Mom would have been on the constant verbal attack of the other occupants..so that wasn’t an option).
So she went to the shithole, as I call it. They didn’t care about her. They provided a minimum care level at best. Mom hated it within two days, and wanted to go back to the previous place. The Lutherans said no, someone from the wait list had immediately taken her place.
So…she was stuck there. Hating it, understanding it, verbally and physically abusive to others, and finally left largely by herself in a virtually bare room. Because, of course, she got C-Diff over and over and over again. She wanted out, so she stopped eating, then drinking. I ramped my brief visits up to every other day, essentially doing a drive-by.
She died one day as I walked into her room. I saw it happen, and was there as her consciousness faded, and I told her that I would continue to care for my little brother. Hopefully that was some comfort for her. I dealt with everything that followed; no one else would.
Do I feel guilty, almost a decade later?No. It’s hard to assess how I really felt about her. Resentment, dislike, discomfort, yes. Obligation? Yes. Love? No. No……… No. I have a sense of obligation towards my MIL, too, but can honestly say that I love her, and would do darn near anything for her. My mom? Only the minimum…and her others kids did nothing, either because they couldn’t or wouldn’t.
My sister was a bit of a different story. Short version: major depressive during her life, no marriage or kids, alcoholic, ultimately injured as a result of drugs and couldn’t work. Lived on welfare for 25+ years. The good life for her was a pack of cigarettes, a six-pack of Coke and a bag of weed. She loved her family, but was captured by the constant emotional blackmail of my mother.
She was severely injured in the shower, suffered renal failure and had to go on dialysis, and decided that was a bridge too far. she was bedridden, and dying from renal failure was going to take “too long” so I helped her to investigate DWD. The answer was no. So…she’d quit eating and drinking as well. She had a good friend/neighbor who stayed with her the entire time, and I visited daily. She died peacefully, with plenty of weed and cigarettes. Did I feel guilty? No…Karin had largely made her own life decisions and just loved her as a little brother does. Did I love her? Yes, though at the same time I stopped attempts at intervention when my own kids got older.
The upshot? You’re a fucking saint. Noelle is too. Not from an unrealistic ‘without flaws’ basis, but rather from a ‘you give, and give, and give more, sacrificing on their behalf ‘ basis. Out of love, it seems, and probably also from a sense of obligation and that is is simply the right thing to do. Certainly doesn’t preclude resentment, wither of Mom, Dad, Noelle’s parent, sibs, the situation, or even Noelle.
It’s like bravery not being the absence of fear, but rather action in spite of fear. Your personal honor is at stake (as is your sib’s) and while only you and Noelle can answer the “is it enough?” question, from the outside looking in it seems so. But the situation is a veritable black hole of need, isn’t it? It will take all you choose to give and more. God is screwing with you, as He does. Tough choices. That God is a a comedian, alright.
Being the bomb thrower that I am, I’ll say that – given your characterization – your sibs are failing to step up. Even if they can provide financial support they should 1) understand the (all sorts of) drain on you two, 2) regularly acknowledge your efforts and 3) seek to find other ways to support their parents. They are, most likely, feeling incredibly guilty and so resent the hell out of you. That’s makes them even less likely to act/speak/own.
In looking back at the paragraph above I thing I’m not filling the bomb thrower role very well.
If the sibs won’t step up then fuck ‘em. They are failing their filial duty and screwing you and Noelle in the process. In my book that’s cause for severing the relationship, especially if the need for support has been called out repeatedly. If they don’t act like family then they don’t get treated like family. You can forgive, yes, but that can be done at a distance. I sure wouldn’t be sending Christmas cards to someone who keeps pissing on my leg…
Spade = Spade, why not just say so and let the chips fall where they may? Why continue to enable people who are being assholes?
I’m good, thanks for asking!
(Won’t hurt my feelings if you delete this comment if it doesn’t fit the desired ethos).
I’ve read your response several times. I’ve both teared up and laughed out loud at your feedback.
I recognized early in this journey with my parents that there would be gross inequalities in the amount of time that myself and siblings would spend in caring for my parents. I’ve tried to extend grace to my siblings, yet, I’m also incredibly angry with them. I don’t know the path that they’re traveling, so I want to throw stink bombs at them. Your words about guilt and resentment are interesting to me. I’ll give it some thought.
The decision to move forward with making decisions about my dads care, without consulting my siblings, nor seeking their approval is a gigantic step for me. I’m very, very slow to anger to a point of tossing FU’s out. I’ve been known to do it, but, it takes a lot. I’m not quite there yet.
Perhaps there’s a correlation between my swallowing my anger and my heart issues!
Thanks for sharing your story with us, we appreciate you.
You are my big ginger cuddle bear. Oh crap, did I say that out loud?
Grace and maturity, both of you. Me, not so much. I make a lousy doormat. But if you own it and ask nicely…
Maturity can be overrated!
Thank you for sharing this journey and how you are feeling.
It really resonated with me when you spoke about pre-bereavement. Before we lost Buster, I had so many feelings of grief and pre-loss, and it’s hard when you know the inevitable is in front of you. Love you both so much.
Pre-loss, that’s a great way to put it. Sisyphus-like is how I view our situation. We all know what’s coming, and that, to me, makes the situation so much more difficult.
I was talking with a priest friend of ours, about this subject, very briefly. He shared that he’d also walked a similar path with his mom, and her passing was actually easier to cope with, than her years of dementia. It sounds horrific, but I wish that my parents suffering would be over. Thanks for sharing! We love you guys too!
Your honesty and willingness to do what’s right is granite for your parents and Noelle. Keep hanging on as you balance the difficult issues with the desire to explore. Only you will know if the sacrifices and the blisters are worth it.
Thanks for your response. I appreciate hearing from you. It’s difficult to know what the “right” answer is in our situation. I think I’m trying to focus on making choices today that will give me the least amount of sorrow and grief, five or ten years down the road.