guest post by my sister

Today’s blog post is the first one by a guest blogger! My sister shares her thoughts on coping strategies, relating to aging parents, and grieving the loss of our dad. I’m so pleased to be able to offer you another perspective on this blog’s theme. Thanks, Kristin! (Note: In the photo above, Kristin and I are sitting on Dad’s lap, he’s resting his chin on Kristin’s head.)

I am not a writer by nature. I don’t tend to need to write things down to help me process things. Although I don’t think those things are necessarily wrong, I just don’t utilize those methods for me. That being said, the thought of blogging doesn’t come to the forefront of my mind, but since my sister asked if I’d like to share my perspective of everything that has happened I think I’ll give it a go.

It has been a roller coaster of life since the summer of 2015. In July, my then six-year-old had an emergency appendectomy while at the same exact time my dad was in the emergency room with unknown stomach pain. A month later my dad had his gallbladder removed with some rough reactions to anesthesia. Fast forward to October when I had pneumonia followed by a bad fall resulting in a pilon fracture of my left ankle requiring two surgeries and six months to get back to some semblance of normalcy. As soon as that was over (as best I can remember) my dad had a series of falls culminating in the one my sister has referenced with a stroke that ended with him breaking his hip, staying in a nursing home, and ultimately his passing away.

Needless to say there was hardly time to come up for air between all of these things and it doesn’t seem to be letting up anytime soon now that my oldest child has been in the hospital for six weeks so far with three more to go before my first grandchild will be born. Coping for me, in many ways, has just been like treading water and hoping to stay afloat. Thankfully I am a stay-at-home mom and have allowed myself to rest as I felt I needed to. The other thing that has helped even more than the aforementioned thing is my faith in Jesus Christ and a loving church family that I know has held me up in prayer when I couldn’t do it myself.

I have been fortunate that I live right by my parents and because of that I have been able to build a closer relationship with them. When I was younger it wasn’t always easy. We didn’t see eye to eye and we still have different opinions about some things, but as the years went on we have come to have, I believe, a mutual respect for one another.

The hardest time I had in this whole season of life was those last few days before my dad died. It was physically and emotionally taxing. Even though I have a strong Christian faith I have struggled with death and the unknown of it all. I had secretly hoped that I wouldn’t be present when he physically passed because I wasn’t sure how I would handle it or what impact it would have on me. The night before my dad died I felt led by the Lord to have a time of singing some of his favorite worship songs at his bedside. It was a beautiful and sweet time in God’s presence. The following afternoon I watched my dad take his final breath.

It wasn’t until a couple of weeks later that I started having trouble sleeping. Flashbacks of him in his last moments and songs I had sung would come flooding back and disturbing my peace. In those moments I took time to cry, pray, talk to my dad, and read my Bible.

I still struggle with the idea of death at times but not about the times I shared with my dad. The times I had and the memories we created are precious to me especially the last time that he was awake and alert. He told me he was tired. I told him he could go to sleep if he wanted to, that I would be leaving shortly anyway. He looked at me and told me he would wait to sleep until I had left. He wanted to be awake to spend his time with me. When I left we shared a sweet hug and a kiss on the cheek. That was our last time talking… for now.

dreams, guilt, grief, selfishness, regret, faith

I continue to dream about my dad. A few nights ago I dreamt he called me on the phone and asked for my mom. I was so happy he wasn’t dead. I ran around with the phone in my hand trying to find Mom so he could talk to her.

Then I was standing in the streets of a city at night, talking with a friend. A parade of veterans, all old men, went by. I caught a glimpse of my dad jogging in the parade. I said to my friend — “That’s my dad! He’s alive!” I ran through the crowd after him but he was gone.

I’ve been visiting my mom once a week and calling her every other day for long talks. Sometimes it stretches an extra day between talks. She seems cheerful enough, but she is still pretty much keeping to herself. She will usually make a reference to Dad somewhere in the conversation: like we were talking the other day about how a lot of men prefer to read nonfiction and she said well Dad was just the opposite. And we were talking about how we’re going to handle her taxes this year and she said Dad always sent them in as soon as possible to get the refund. I feel a twinge of something — guilt? — that I’m not the one bringing him into the conversation.

My family is going through another crisis unrelated to aging parents so I won’t detail it here except to say that my niece’s high-risk pregnancy has landed her in the hospital for nine weeks, until the baby arrives. Things seem to be under control for now. The relevant point is that my mom seems oddly detached about it. I mean of course she feels bad for my niece, but she (my mom) isn’t as upset as I would expect her to be. Mom has some intermittent, relatively minor health issues of her own that she seems to be using as an excuse not to visit my niece at the hospital. I see this as similar to the self-protective emotional withdrawal I previously experienced as part of the grieving process (see “thoughts on grief” post).

My niece’s hospitalization is also relevant to this blog in that my weekly visits to her impinge upon my visits to my mom. The hospital is on the way to Mom’s house so I’ve been bundling the trips into the same day so far. This is shortening my time with my mom when I visit her. When my dad was alive I was visiting my parents twice a week but since his death I’ve been for lack of a better word more selfish with my days. This bundling thing isn’t going to work indefinitely though. I think my mom needs more attention and plus there are some additional practical things related to death affairs that I need to do now that some time has elapsed. We are still waiting for the death certificate (automatically kicked to the county medical examiner since Dad died within six months of breaking a bone, the broken hip that landed him in the nursing home). When we receive it there will be more work for me to do.

There are two other things I want to write about in this admittedly rambling post. One thing is that I’ve had some feelings of regret about deferring decisions about my dad’s care to my mom. Like the other day I was watching tv and saw an ad for an alternative medication that regulates blood coagulant levels and I thought if I would have pushed to get Dad on that maybe he wouldn’t have had the bleeding crisis that seems to have precipitated his death. I want to avoid similar regrets about my mom. But my mom (and my mother-in-law) have strong feelings about autonomy and personal stoicism. How do you balance respect with care? Which is of course the big question inherent in every aspect of caregiving for aging parents. I’d like to talk with my sister about this, and about grief, but feel that I can’t right now with everything going on with my niece.

The last thing is that I am really struggling with relating to my mom regarding politics and religion. This blog isn’t a platform for my own political opinions, and I’ve refrained from talking much about religion either. I feel like there isn’t enough commonality of religious experience to make discussion about it all that helpful here, or perhaps it is more truthful to say that I don’t talk about faith because it isn’t a big part of my own caregiving experience. Not having a shared faith with my mom makes it harder to comfort each other after Dad’s death. Having dramatically different political opinions in this politically charged time makes me feel less close to my mom.

I don’t think Mom feels the differences as acutely: she knows I don’t agree with her political views but she still shares them with me at times and I struggle to stay silent. Silence is easier for me than frustrating and futile arguing. She might suspect that we have different thoughts about religion but again I don’t discuss it with her as I fear that it would create a rift between us. I find things to agree with when she talks about religion with me. At a time when closeness would be helpful, these differences are making things harder for me. I hope that Mom isn’t feeling it.

 

thoughts on grief

Grief is attendant to any loss. Everyone grieves but sometimes it’s hard to recognize it. Grief is more than a feeling of sadness. Today I’m going to explore some facets of grief. It’s hard for me to discern Dad’s grief about dying because he was pretty confused mentally the last five months of his life. I want to think about that sometime, but today I’m going to look at my grief and my family’s grief.

Elizabeth Kubler-Ross famously identified five facets of grief in her book On Death and Dying. They are denial, anger, bargaining, depression, and acceptance. She presents them as a general progression although she notes that not everyone goes through every “stage” and that some facets are intermittent and coincident with others.

Denial and Anger

My dad died last month, but that was just a final loss in a succession of losses. He had some strokes, gall bladder surgery, and some falls over the two years prior to the final stroke and fall that broke his hip and put him in the nursing home last summer. After each of these incidents, Dad lost some mental acuity and mobility, more and more he lost interest in the effort to recover them.

For me, the big denial surrounding the loss of my Dad over time was the persistent thought that there was no physical reason why he couldn’t recover from each trauma. So in retrospect I see that I often looked for a “magic button” that would mobilize his resources to effect his own recovery. It seemed to me that my mom and my sister both experienced this same thought more as anger toward Dad than as denial.

After Dad’s death, the hospice team invited Mom to a group session for people surviving the death of a loved one. Mom is not interested in going. She says she doesn’t feel a need. She also says that she thinks people get stuck in support groups instead of moving on. I can’t judge that for her, but I think there is a chance that her attitude is colored by denial of her feelings of loss.

Over the past week or so I found myself feeling angry for no apparent reason, like when I began my morning yoga practice. The anger wasn’t directed at anything in particular that I could identify. I noticed after awhile that the anger seemed to be replaced by a sort of not unpleasant indifference to everything — I didn’t particularly want to do anything, like  work on a project or meet up with friends, but I was fine with doing whatever happened to be going on. My therapist (who I’ve seen twice since Dad’s death) thinks this is grief, the explicit anger morphing into a self-protective withdrawal of attachment to things as a reaction to loss.

Bargaining

I went through a short bargaining stage with my husband one evening in the middle of the four-day death watch. When Dad actually began actively dying it was a total shock. The hospice nurse was just as shocked as we were and even suggested that perhaps he wasn’t dying after all. I talked with my husband about whether a mistake had been made or what could be done to revive Dad. I also deeply regretted the fact that my family and I had respected the nursing home quarantine during the contagious “stomach flu” the days prior to Dad’s sudden turn. I feared that Dad had felt forsaken and had died of loneliness. My therapist sees this second-guessing as a form of bargaining. I didn’t stay in this phase for very long, in part because Dad was old and it had been so hard to keep him feeling safe and happy in the nursing home, and in part because it was too painful for me to think of his possibly terminal loneliness. Which I guess I may need to deal with later at some point.

I don’t know if my sister or mom have experienced any bargaining grief. My mom got a dog about two weeks after Dad died. I had wondered what she would do about the loss of her caregiving role after Dad’s death. For many years she had looked out for Dad and even while he was in the nursing home she visited him nearly every day. She had already become accustomed to living in the house by herself, so I don’t see the dog as solely about a need for companionship. I wonder if in a way getting the dog is sort of bargaining with Life, like filling this hole with something else to care for instead of taking time to accustom herself to the loss of her caregiver identity.

Depression

Kubler-Ross says there are two kinds of depression that dying people and their families go through. Reactive depression is about past or current losses, preparatory depression is about impending loss. I think I’m kind of going through a preparatory-type depression when I feel sad about the fact that I don’t have any more time to connect with my dad now that I’ve come to a better acceptance of him as a person and a father. As I wrote previously, I struggled with being close to my dad during my teen and younger adult years and came to a better understanding of him a few years ago. I now realize that part of my visits to the nursing home these past months were about a hope I had that Dad would recover some of his ability to be himself and feel happier and interact more meaningfully (which I also wrote about previously) — and that this would result in our being closer as adults than we had a chance to be in the past, now that I felt more acceptant of and less frustrated with him. Now that fantasy is gone forever.

 

 

the practical and the personal

I don’t want to write post after post about my dad’s death because I imagine that would be, well, depressing and let’s face it: boring. So today I’m going to write about both the practical and the personal aspects of the days following my dad’s death and then I expect I’ll move on to other topics concerning “my aging parents” since I still have an aging mother and mother-in-law.

The practical part

My parents have both often stated their desire to be cremated. My sister and mom had previously selected a funeral home for Dad’s cremation and mom picked out an urn from their catalog. The bill for cremation, urn, and ten copies of the death certificate was $1,200. Over the next few days we discussed a private memorial service (planned for December 30, Dad’s birthday) and my sister took care of those arrangements.

I stayed with my mom for a few days and helped her with notifying various agencies and services that Dad had died. I consulted several resources, among them: Widowhood Checklist, Newly Widowed Checklist, and Surviving Spouse Financial Checklist.

A note about the timing of notifications. You don’t want to notify your bank right away if you have joint bank accounts, because then they will remove the deceased’s name from the account and won’t be able to deposit money that comes in for him. You also want to wait a little bit on canceling joint credit card accounts and opening new ones under the survivor’s name, I don’t remember why. Other things that can wait include changing the names on billed services (like utilities), on vehicle registrations, and on real estate titles. Since Dad wasn’t driving anymore we don’t have to contact their auto insurance, but we will contact their homeowner’s insurance later

Top of the list is to notify sources of the deceased’s income (for us that was Social Security, and Dad’s employer pension). That’s because you don’t want to get in a situation where they are looking to take money back down the road. You also for obvious reasons want to immediately notify any potential sources of death benefits, such as life insurance companies (for us this included the Veterans Administration). Another important thing: since Mom is covered under Dad’s employer-provided supplemental health insurance, we needed to find out right away about how that was going to work. I also contacted Medicaid and the mortgage company.

We found out that Mom’s reduced income from Social Security and Dad’s pension will be about $100 more per month than it was under the Medicaid division of income (see posts tagged “Medicaid” for more information).

The personal part

When we were in the nursing home for four days watching my dad die, I came upon a very helpful webpage on End-of-Life Signs & Symptoms. It is written directly but gently and I especially like how it gives you ideas of how to help the dying person. The site also framed Dad’s frequent deep sleeping, lack of interest in watching sports (a former passion), and delusions of being in Italy over the past couple of months as signs of the beginning of the dying process. I had been feeling very upset that my mom and I hadn’t visited Dad for about two weeks before he died (while the nursing home was dealing with a contagious virus): I feared that his sudden turn was a sign that he had died of loneliness. The site helped me see that he had probably been on the road to death for awhile.

As I mentioned already, I stayed with my mom for several days after Dad died. I scheduled an appointment with my therapist for later in the week and sort of postponed personally dealing with Dad’s death until then. But by the time I met with her, I was already kind of over feeling upset. I don’t know how I got over it, and I never cried (my therapist said I probably processed it subconsciously, like maybe while I slept).

I wasn’t very close to my dad, he wasn’t an easy person to be close to. I spent many of my teen and early adult years feeling hurt and impatient with what seemed like his selfish lack of interest in me. Over the last several years I came to an understanding about my dad that helped me feel softer toward him. This understanding is one of the rare things that is too personal to write about here, sorry. I regret that I didn’t understand him better earlier in my life, but I’m glad I got there eventually. And I’m very glad I did my best to try to help him feel safe and loved over the last year or so.

Things my dad gave me: a love of reading and mathematics, an affection for Star Trek (the original TV series), a rational mind, low blood pressure. He taught me how to play poker. He was a master storyteller. I find with his passing I feel alone in the absence of his kindred spirit. I miss thinking something through with him, both of us logical and dispassionate, neither of us being made to feel like an alien or a freak for being calm and detached. I miss knowing there is someone else in the world who thinks it makes total sense to eat the same thing for lunch every day. After my dad’s death I am faced with the realization that there is no longer someone else in the world who is like me in these intimate ways. I am now the only person in our family who is like us, and it makes me feel kind of lonely but also weirdly responsible, like now it is up to me to feel this space in the family by myself.

 

 

 

coping strategies

Handling the changes in the relationship with your aging parents is stressful. It requires some different coping strategies. Everyone’s situation is different. Maybe you’re trying to balance caring for your parent with child-rearing and/or a job or career. Maybe you’re hands-on giving your parent practical care, or maybe you live hundreds of miles away and are trying to sort things out and make decisions long-distance. On top of the time involved, there’s the emotional roller-coaster, and everyone has their own temperament and way of responding to emotional stress. The following strategies are things that I’ve adopted that work for my own situation but that I think could generalize to others as well.

Understand yourself

This is another idea I’ve gotten from reading Shunryu Suzuki’s Zen Mind, Beginner’s Mind. The idea is that we each have to make our own way moment by moment and we can only do that when we understand our self. How do you get your energy? I get my energy by being by myself. Maybe for you it’s going out with friends. Another part of this is noticing when you aren’t handling things too well. Detach from yourself a little so you can notice when you’re in a spiral and then temporarily prioritize doing the thing that gives you the energy to pull out of it.

Sidestep family drama

When you’re dealing with parent issues, it’s important to work as a team with your siblings. My sister and I are doing pretty well, but working as a team means different things to each of us. There are definitely some things I’d like her to do and attitudes that I’d like her to have that aren’t going to happen. Basically I remind myself to appreciate what she does do, accept the fact that she’s a person with her own opinions, and then… I just work with it. You just have to work with what you have. Sometimes that means doing something myself if I think it’s important and sometimes it means letting go of the way I want that thing to be.

Spread your need for support around

Hopefully you have a couple of different people in your life that you can talk to about things. I have one friend who’s great at saying outrageous things to support me. Once in awhile, when one thing after another happens and all you can do is throw up your hands and laugh helplessly at the universe, she is my go-to person. I have another friend who’s gone through a lot of stuff with her parents. I appreciate her matter-of-fact reactions to the things I’m dealing with. My husband is great at listening to me talk about my dad because he knows my dad and our relationship. Sometimes (often) there aren’t answers and that’s a frustrating place for any one support person to be. You don’t want to dump everything on one person all the time and burn them out. If you don’t have a few different people to talk to then by all means contact me.

Be a little easier on yourself

Probably most people are like me and have one or two areas in which their standards for themselves are higher than their expectations of others. Very recently (like yesterday) I realized that I’m taking small responsibilities too seriously. For instance, I volunteer at an archival library and today I decided to get there a little late and spend some time doing some yoga and meditation first. Normally I regard any commitment I make as if it is engraved in stone. I’m sure there’s something like that for you, something that you value very highly to the point that you expect more of yourself than is really needed. It’s fine to relax those standards a little bit right now. Whatever it is, pretend like it’s someone else who’s going through this stuff with their parents and trying to maintain this high standard. Wouldn’t you tell them to let go of it a bit? Follow your own advice.