Tag: caregiving

Belatedly Thankful

After my mother suffered her stroke, I subscribed to all kinds of forums and discussion boards aimed at caregivers.  It was definitely helpful to hear other people’s perspectives on the issues I was encountering.  I learned some valuable, practical information.  Knowing that other people struggled with the same feelings helped me tolerate the conflicting emotions I had misfiring all throughout my sympathetic nervous system.  

There was one recurring theme that kept coming up in different posts that I just couldn’t get behind, however.  So often a participant would write to encourage someone in the throes of caregiving by saying that the day would come when the caregiver would be grateful for the experience.  While I was living it, I don’t know that I could ever really say I was grateful for the experience.  It wasn’t that I thought the well-intentioned commenters on the discussion boards were lying.  The term “Pollyanna” might have come to mind.  On the whole, I accepted that those people were being honest about their own experiences and their feelings of gratitude, but their experiences just didn’t seem to apply to me.  

People said that caregivers end up triumphing over the drudgery, exhaustion, and sadness.  They said that it is common to transcend the difficulties of the long struggle so that providing care becomes easier.  I didn’t see how that could happen with me, as inept as I was.  They said that the difficulties of caregiving take a backseat to the benefits the caregiver receives, like the satisfaction of providing for a parent’s comfort.  I didn’t see myself really providing for my mother’s comfort, just witnessing her decline.  They said that a caregiver can consider any additional time with the dying parent to be a gift.  I often felt like this gift came at too high a cost to both my mother and me. They said that, no matter how painful and difficult it is to walk with a parent on this final journey, the caregiver is rewarded by a closer, more intimate and loving relationship with the parent.  I didn’t see how this could be possible with my mother and me.  Our relationship has always been closer than that of any other mother and daughter I know.   

So, all in all, I could not find much for which to be grateful while slogging through the tragedy of my mother’s last thirteen months of life.  I admit that I found the folks who posted about the “gift” of being a caregiver to be somewhat suspect.  When I read those posts, I remembered the saying, “If you can keep your head while everyone around you is losing theirs, perhaps you don’t understand the situation.”  In other words, if the posters who were touting the joys and benefits of being a caregiver were sincere, perhaps they didn’t really understand the situation.  I admit that this was probably a bit of misplaced anger on my part.  Still, I also knew that I was not finding caregiving to be a gift.  I felt that I was somehow fundamentally flawed because I couldn’t get past the pain to grasp the joy. 

Now that my mother is gone, I am beginning to understand a little better. I can look back and be grateful for the time we had together at the end of her life.  I was not a very talented caregiver, but I did learn a lot of the skills necessary.  I see that my mother did derive substantial comfort from my presence.  Yes, it was very difficult for me to observe my mother’s decline, but I do now appreciate the time I had with her in the last months.  Even though we have always been exceptionally close and our ability to communicate verbally all but disappeared in my mother’s last months, I feel our intimacy grew richer and stronger and more honest as we took this journey.  No, I never did get completely past the drudgery and exhaustion and sadness, but I do now see the gift.  The gift was loving my mother through it all and letting her love me.  Now I am thankful for it. 

Gratitude deferred is not gratitude denied.  Gratitude deferred is growth.

Have you ever had an experience that you hated while going through it, but came to appreciate it after it was over? Please join the conversation and tell us about it!  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com.  

Have a thankful day!

Terri 🙂

P.S. Special programming announcement…. I am going to be on a trip around the world (Disneyworld, that is) for a few days next week.  I’ll be posting on Thursday evening instead of Wednesday morning.  

Winter Wheat

Ever since my mom’s stroke, people have been telling me to remember to take care of myself.  These people mean well. They are often very somber and earnest in admonishing me to take care of myself. It is as if they believe they can will their words to permeate my brain and convert into action. They never quite do.

I realize, on some intellectual level, that self-care is important.  I don’t think I fully accept that it is important to me, however.  After all, it isn’t like my mother is living with me and I am the full-time caretaker.  Lots of people handle much heavier burdens than I do.  Somehow, “just” managing my mother’s life, being her advocate, and visiting a couple of hours a day six days a week doesn’t feel like enough to entitle me to the concern of those well-meaning people.  It doesn’t feel like I deserve the “permission” to take care of myself.

I remember reading the book The Long Winter by Laura Ingalls Wilder (of Little House on the Prairie fame) when I was younger.  The premise of the book is that the residents of a small town in the Dakota Territory were running out of wheat to make bread during the particularly cold, blizzardy, and brutal winter of 1880-1881.  Most of the citizenry, regardless of how they earned money, raised their own food.  Some people were actually commercial farmers, but even those who weren’t had chickens for eggs, a cow for milk, and fields of vegetables. And wheat.  They grew wheat for home consumption. They stockpiled stores of the grain to make sure they would have flour during the lean times of the year when game was scarce and the ground was too hard and barren to yield crops.  They were hardy, forward-thinking pioneer people who knew how to eke a living off the land.  They were used to living in harsh elements.  That long winter demonstrated that, sometimes, the elements win.

As the wheat supplies dwindled and winter showed no sign of abating, townspeople started approaching starvation.  Because the weather was so violent, it seemed foolhardy to travel to a larger town in hope of finding emergency grain.  People were rationing and doing without, but it became clear that the town was not going to survive until spring without some infusion of food.  A rumor started that the Wilder brothers still had a store of seed wheat that they intended to use to plant the next season’s crop.  One man in town approached them, begging them to share just a little of the seed wheat to keep his family from starving to death.  The Wilder brothers agreed, but could see that this was, at best, a stopgap measure.  Giving up their seed wheat would only stave off the famine in the town for a week or two.  It would also mean that there would be no wheat at all to plant for the next season.  Ultimately, the brothers decided to brave the wicked whiteness to find wheat for sale. After a long, uncomfortable, and perilous trip, they found someone with wheat and brought back enough to see the town through until spring.

I think this story is a good metaphor for caretaking, even if one is “only” providing care for a loved one living in a nursing facility.  Caretaking does mean meeting the hour-to-hour physical needs of a loved one. It also means some other things. It means managing the administration of her life. It means being her advocate to campaign for her wishes. It means listening and concentrating and trying to interpret when she attempts to communicate. It means keeping her company.  It means trying different strategies to keep her engaged and connected. It means being her proof that she has been-and still is- valuable and loved. It means showing her that she, herself, is still able to love.

All these forms of caretaking involve stress. They all require energy and emotional food. All caretakers are susceptible to emotional famine.  It may feel safer to try to just ride out the difficult season, rationing your emotional reserves and hoping you make it to spring.   It may feel dangerous and impossible to remove oneself from the immediate situation to look for the food that might be the longer-term solution to the problem.  After all, if I give my all and do nothing but my best all the time, all I am left with is nothing.  And nothing won’t yield any wheat in the next season.

What do those of you who are caregivers do to replenish your supplies when your “winter wheat” is diminishing?  Please respond by leaving a comment.  In the alternative,  you can email me at terriretirement@gmail.com.

Have a nourishing day!

Terri 🙂

The Worst Day Of My Life

The single thing that I’ve dreaded most since my mother’s stroke has come to pass.  We transferred her to a skilled nursing facility.

I thought I was prepared for having her in the nursing home, but I completely fell apart.  The feelings of guilt, shame, and defeat about not being able to care for her at home just overwhelmed me.  After nearly four months of struggling through, I was right back to the worst case scenario we were trying desperately to avoid right after she had the stroke.

After migrating between the rehab and the hospital several times and, finally, going to a hospice house, it seemed that death was not imminent for my mother.  It was also clear that she really was not going to get better. Truthfully, she has been declining since her first rehospitalization after the stroke.  She did pretty well in rehab the first month after the attack, but appeared to start on a downhill road when she went back into the hospital for some auxiliary issues.  That road included several moves between the hospital and rehab facility.  That road was pitted with many physical, emotional, and mental obstacles.  While the doctors were able to stabilize the physical obstacles, her ability to process thoughts and communicate seemed to be fading away.

It appears that she continues to suffer from stroke-related language and cognitive impairment.  This is fairly common in stroke patients and, given my mother’s particular set of circumstances, it is likely that it will get worse over time.  It is similar to Alzheimer’s Disease, except that the cause and progression of the condition are different.  The condition can cause death, but usually the patient passes from something else first.

By the time she went to the hospice house, the medical staff believed that the combination of the obstacles she was fighting would prove to be too massive for her to overcome.  They believed it was likely that she would pass within a few days or weeks.  However, something clicked in my mom’s brain, and she started to adjust to her condition.  The hospice staff changed the prognosis.  They still believe her condition is terminal and they are still going to provide supportive care, but they no longer believe she is in her last days.  Because the actual hospice house is only intended for patients in the last stages of death whose symptoms cannot be managed in a “regular” (home, nursing home, assisted living, etc.) setting, the staff reluctantly advised me that it was time to find a longer-term residence for her.

Before she went to the hospice house, I worked with staff from what I call an “assisted living plus” facility.  It is an assisted living facility with additional medical certifications that allow them to provide a higher level of care than most places.  For most of my mother’s illness, our goal had been to get her strong enough to be able to live there.  It seemed an ideal answer. It would be like she was living in a little apartment of her own, with privacy and as much independence as she wanted and could manage.  Unfortunately, by the time she was facing release from the hospital for the last time, the assisted living facility staff evaluated her status and found that her needs were just too far beyond what even they could handle.

Kicking and screaming, I started looking at skilled nursing facilities.  This is a tricky matter for many reasons, but one of the most difficult to manage is the fact that many nursing facilities operate at full capacity. They have lengthy waiting lists.  In evaluating the residences, I had to balance quality ratings from Medicare, online reviews, my own observations on visits, availability, and proximity to my home.  Of course, the facilities with the highest ratings were also the ones with the lowest availability.  I ultimately picked one that seemed okay, had reasonably good ratings and reviews, and had availability.  An added bonus was that the facility is very close to my home.

When I checked on my mother once she was at the new place, she seemed okay… calm and content.  I was far from okay.  The residence was not bright and shiny and new.  The neighborhood wasn’t affluent.  At times, I could hear other residents crying and yelling.  Some of the other patients were holding stuffed toys or baby dolls, clearly convinced that these objects were real.  I’ve always said that, wherever my mom ended up, I hoped she would have a quality of life approximating or at least reflecting what her life was about when she was living it fully.  I wanted her to be in a setting that would help her form a social network with people who could become friends.  I didn’t want her to be the most able person and be surrounded by people living shadow lives.  I thought that would depress her and lead her down the same shaky path.  Now, I was leaving her in a place where she was living with people in just the situation I dreaded.  Unfortunately, the gut-crusher is that she became one of those people before she ever got to the nursing facility. In fact, I’ve learned that it isn’t so much that people who live in nursing homes have a severely reduced quality of life.  It is more the reverse.  People who have a severely reduced quality of life move to nursing homes.

Paradoxically, part of the sadness and guilt over placing my mother in the nursing home comes from the fact that my mother’s cognitive and language skills seemed to improve somewhat over the past couple of days before the move. Originally, I didn’t feel quite so bad about the nursing home because my mother seemed to be withdrawing from the external world- not being very communicative or alert.  Everything I read about hospice talked about this withdrawal as being typical when people approach the end of life. The way she was withdrawing and sleeping so much, it didn’t seem to matter too much where she was.  As long as it was clean and safe and met her basic needs and I was there frequently, I didn’t think it was going to make much difference to her.  Then, just as the hospice people were getting ready to transfer her to a nursing home, she started consuming a bit more fluid and nourishment, staying awake much more of the time, and talking more clearly about more sophisticated ideas than she had since the stroke.  I was almost sorry because it made the move to the nursing home seem worse.

Still, as time goes on, I am encouraged.  My mother is truly only experiencing the tiniest sliver of the quality of life she enjoyed before the stroke.  However, she continues to seem content, comfortable, and reasonably happy at the nursing home. Her cognitive and language skills are spotty, but I appreciate that there have been times when I’ve been able to communicate with a person who really did seem like my mom again. Because the nursing home is the longer term living situation, a lot of things are easier… both for my mother and for me.  The health care professionals are very responsive and practical.  The administrative side of the operation has been helpful and understanding.  Between the nursing home staff and the hospice folks that work with them, they are finding ways to make my mom’s life more comfortable.  They spend time with her.  They talk with her.  They are truly caring.  On the other hand, they respect her wishes and don’t bother her by pushing her to do things she doesn’t want to do.

Maybe the most important factor in my journey towards acceptance of this new reality is that my role as caretaker is changing now.  Since the medical staff is pretty much on the same page as my mother and me as to the type of care she wants, I have to fight fewer battles as her advocate.  Since she is now where she is going to be for whatever time God has left for her in this world, I don’t have to keep analyzing different residential options.  I’ve retained a law firm to help me with the financial burden and I’m working through the administrative issues more methodically, so I find I am spending less time and energy on those problems.  My caregiving is now much more about just being with my mom, showing her I love her, and letting her love me.

Since my mother has been in the skilled nursing facility, I get to be just a daughter again.  That has been the best unexpected positive result…. Of the worst day of my life.

My mother has been in the skilled nursing facility for about two months now.  All things considered, everything is going okay.  My mom seems reasonably chipper and content.  I am with her at least six days a week.  I can’t completely shake the sadness and guilt, but I’m holding it at bay most of the time.  My current challenge is finding new ways to communicate and engage her as her language disappears and her thinking becomes more muddled.  Anyone have any ideas for me?  I’d appreciate any suggestions!  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com.

Have a loving day!

Terri 🙂