Lesson #6 - Do What You Can, How You Can

When you're in the thick of dealing with the many, many issues involved in caregiving, it's hard to even contemplate doing . . . more.

But rest assured, the day will come when things slow down for you. Or when you are reflecting back on the past. When (not if) that day comes, you may wonder what you can do to make a difference for others.

For me, this blog is a start. For a fellow jigsaw puzzler, it is a combination of fundraising and celebrating a personal joy. Check out what Leslie Mallory is doing to make a difference here.

(http://act.alz.org/site/TR?px=7813930&fr_id=10935&pg=personal)

I cannot participate on June 21 this year (my wedding anniversary AND the rehearsal for my youngest son's wedding) . . . but I may donate.  And I am making a note of this event for 2019. And I am asking myself "What can I do to make a positive difference?" Caregiving can be challenging, but complaining isn't productive (or enjoyable).

Do what you can, when you can!

(On a random side note, my parents always referred to "Alzheimer's" Disease as "Old Timers'" Disease. They were so cute!)

Lesson #5 - Senior Housing

I should have written this entry a long, long time ago!

My parents were able to stay in their own home until they died. In fact, each of them died in that home. I'm so glad they were able to afford caregivers and stay where they wanted to be!

My father-in-law was not able to stay in his own home. He was lonely and not skilled at taking care of himself or a home. He lived with us for four and a half years and probably would have stayed, but it was less than ideal for me.

We were able to find a senior apartment in Northfield that was subsidized (based on income) and it had an opening! We moved him into the apartment on October 1, 2017. What a huge difference that has made for us! He is doing well, making new friends, using the bus, etc.

A good friend of mine is approaching that point where her mom will need to find somewhere else to live. This woman does not have the resources to afford something full-price. (Many senior residences cost $3,000+ per month *before* adding on services!) I had recommended that she call the Senior Linkage Line (1-800-333-2433) which is a Minnesota thing that is such a blessing!

In addition to the Senior Linkage Link, there is a Senior Housing Guide at https://seniorhousingguide.us/senior-housing/rental/ and it is so amazing! You can click on "subsidized" and then sort by county or proximity to a certain zip code. Again, this is a Minnesota thing. I'm not sure if other states have their own version. I hope so! It can be hard to deal with these issues and it's nice to have some options.

Lesson #4 - Superman is an Alien

So I'm at the end of my rope . . . and still trying to climb back up. I remember when I was a young working mom, thinking "I am NOT SuperWoman! I can't do it all!" But when you're a capable person who is used to *doing* things, you keep trying. SuperWoman and SuperMan are fictional characters who are *not* from Planet Earth, where the rest of us originated.

It's important (since we don't have super powers) to ask for help. I'm not always good at that. I usually offer to help. But I'm at a point where my own strength is most definitely not enough.

How does a capable, competent person ask for help?

1. Be specific. "I need you to watch Person X for two hours this weekend. Which day and time works best for you?"
2. Spread the wealth. Make a list of people you can ask. Friends, family, neighbors, co-workers . . . having a long list extends the possibilities.
3. Be thankful. "I really appreciate your help. This means a lot to me." People like to hear this and it's most likely truer than they know!
4. Evaluate your needs. Do you need a break or do you need a complete change of situation? Go ahead and list out the pros and cons, the possibilities and dreams. Sometimes the craziest things that come up in brainstorming sessions are actually things that could happen.

I'm sure there are more "how-tos," but I'll leave it at that for now. Right now, I'm asking my husband to help me with possibilities for his dad's future . . . and it's not easy. Back when my siblings and I were caring for our parents, there were times one of us had to call in reinforcements. For my oldest sister, it was her saying, "I can't take every Sunday." (long story - not for here) For me, it was calling one of my adult sons to share a weekend day when my own schedule and nerves were over-taxed.

Do it. Ask for help. And *don't* feel guilty about it! As human beings, we sometimes just need some help. Chances are good, you've helped others in their time of need. You'll pay it forward again someday, but right now - you need to receive.

Lesson #3 - Caregiving is hard!

This has to be short, because I'm on my way out the door. I just want to acknowledge here and now that caregiving is hard. Even if you have a sunny disposition (which I don't), caring for another person is hard. When you're an exhausted young mom, you go beyond yourself to take care of that baby. That's just what you do. For some reason, caring for an elderly parent is similar but different enough that struggle ensues. I'll share more later, but please know that if you are struggling with caregiving, you are normal! Leave me comments if you wish! I will respond, but not necessarily in a prompt fashion.

Lesson #2 - End of Life wishes and communication

I feel as though everyone knows the importance of talking about end of life issues before it's the end, but this is truly a "big one." In retrospect, I'm really glad that my mom made it crystal clear what she did and did not want for the end of her life. Sometimes it made me feel sad or mad that she seemed to value her own life so little . . . like with her adoration of Jack Kevorkian and saying things like "when I can't take care of myself any more, I'm going to row to the middle of a lake, tie a cement block around my neck, and go overboard." That was distressing! (And I told her that it was distressing; we had a good conversation about it.)

But my siblings and I KNEW what she did and didn't want. We had filled out her health care directive and had conversations. When she fell and (probably) broke her hip on May 12 or 13 (I honestly don't remember which day), the temptation to take her to the hospital was countered by her having been explicit about no extraordinary measures and the fact that she was clearly at the end of her life. All four of us kids and dad were able to spend the last day of her life with her at home.

When my dad died, I realized that the one thing he had asked for as I "made" him go through the Health Care Directive with me was to have Catholic Last Rites. Oh my! He was already dead when I realized it. (And he had been his usual self two days earlier.) Since that was what he really had wanted, Ann said we should do them. Even though neither of us are Catholic priests and my dad was already dead, I looked online and she and I did them to the best of our abilities. (In my belief system, dad had already accepted or rejected God's grace and love. Salvation is a choice of accepting forgiveness through Jesus Christ, not a church ritual.)

When my mother-in-law died, she was adamant about wanting a particular pastor (and family friend) to conduct her funeral. She was adamant! The pastor of her "home" church insisted that she be the one to conduct the funeral. It was so incredibly maddening! It felt very political and inauthentic. Betty didn't even like her pastor much and yet Lou was all for going to his home church and having that pastor conduct the funeral. Louie reminded me that although his mom's last wishes weren't being respected, her eternal soul didn't depend upon the funeral. Since funerals really are for the survivors, not the dead (again, in my belief system), I had to accept that it wasn't of eternal significance that Pastor A did the ceremony vs. Pastor B (who remains a dear family friend - the same one who married us thirty years ago!)

In each of these situations, conversations happened and were reviewed. I love the different Health Care Directives and how they guide you through some of these end-of-life discussions. There's some great information at www.mnaging.org/Advisor/HealthCareDirective.aspx (Minnesota specific, but it seems that different places have similar info). I just went there now and downloaded a blank, editable Word version. For my mom, we had used a form called The Five Wishes that my sister had gotten for her. For my dad, I used the form that Allina (his health care system) provided. I don't know if my father-in-law has one yet and I should ask. Since he's 85 (almost 86) and living with us, it would make sense to have this conversation!

Background Info

So I had jotted a few notes when I was contemplating starting this blog and want to get rid of my scraps of paper. In my "Goals" entry, I covered my hopes for this blog. But a little background might be helpful . . .

In October 2010, I was 44 years old. My mom, Eileen Somers, was 82 years old (just a few months shy of her 83rd birthday). She started having trouble with her vision on either Sunday or Monday, but didn't say anything for a few days. When she mentioned it to my dad, he "made" her go to the doctor. Diagnosis? Temporal arteritis with 75% of her vision occluded! (Yes, she continued driving a car for two days with only 1/4 of her vision functioning. Stubborn, she was.)

The doctors prescribed prednisone (a rather high dosage) and within six weeks, she went from being dynamic and bossy to sleeping for 20-22 hours each day, being confused, and generally looking as though the end of her life was near. She was hospitalized a few times and I stayed overnight in the hospital with her, sleeping on the floor. I actually saw "prednisone-induced psychosis" on her chart.

Anyhow, I've chronicled that odyssey elsewhere. Suffice it to say that my siblings and I started providing care on weekends. Since my dad's macular degeneration prevented him from driving a few years earlier, both parents were dependent upon my siblings and I. Araceli and her daughters provided care Monday - Friday. So for five and a half years, I spent 25% of my weekend time in Bloomington, getting meals and pills, paying the bills and balancing checkbooks, running errands, etc. My mom passed away at age 86 on 5/16/2014 and my dad died on 1/21/2016 at age 89 (just one month shy of his 90th birthday!).

In late February 2013, my mother-in-law Betty (who had been dealing with health issues but was otherwise pretty healthy) went to the hospital because she wasn't feeling well. I wrote about her situation in my Lesson #1 blog entry and in a different blog. Two weeks after her death, my father-in-law came to live with us. He is currently 85 years old.

The past five and a half years have been full of lessons and I'm sure I'm not done learning yet! I am trying to focus on being obedient to God's will in my life, but I confess that I often struggle with a bad attitude and a healthy dose of complaining. I am blessed with an amazing husband who is far kinder than I am. He helps to lighten my mood when I get too discouraged or frustrated.

Leave any questions or comments in the space provided! I'd love to hear from you.

Lesson #1 - Hospice is amazing!

Okay, I only have two experiences with hospice care, but they were both amazing.

Even though my mom was the first to really start declining, it was my husband's mom who went to the hospital on Wednesday, February 20th, 2013 not feeling well. She was diagnosed with acute myeloid leukemia at age 77. She went to hospice at my brother-in-law's and sister-in-law's house in Cannon Falls on 2.27.13. The hospice workers visited us at the house on March 1st. They were amazing! They were patient, kind, encouraging, and helpful as we navigated these new waters. Sadly, my mother-in-law died a week later without receiving many of the services. But just having the conversations and her input while she was able to express her opinion was valuable. It was incredibly hard to lose her so quickly, but we were all able to be with her and say goodbye. More on that later.

My mom had lots of ups and downs from October 2010 until her death in May 2014. During the last few months of her life, I was starting to genuinely get worried about our ability to care for her in-home. My sister Ann (I think . . . it may have been me or Louise) contacted Allina and invited a hospice worker to come out and meet with us. All four of us 'kids' were there with my dad. I invited my mom to come out to the living room, but she declined. I wish I had photographed her smirk! It seemed to say, "Go ahead and meet about me. It's not like I'll cooperate." The hospice nurse was kind, a good listener, and asked some questions we needed to think about and answer. Unlike my mother-in-law, my mom didn't have a particular diagnosis that would trigger the need for hospice. I forgot the name of the rating scale they use (I'll look it up and blog about it later), but although her dementia and confusion were troubling, she still recognized us and knew our names! I think we finally settled on "weight loss" for the diagnosis. She had lost a lot of weight at the end and didn't seem very interested in food or eating.

Ugh! I could go on forever! Suffice it to say, hospice workers (in my experience) are trained and experienced in working with families. They can "read" the dynamics and figure out what's best for the patient. They also prepare the way for things like the death certificate and how to handle different situations. I'll share more later, but if you're a hospice worker - Thank You! You make a powerful difference in people's lives!