I did this all this past Spring before placing my mom and dad. Yesterday I realized what I had overlooked: Hurricane Weather Plan

As Hurricane Earl barreled closer and closer and I reviewed plans and supplies for my family and I, it hit me. What if my parent’s facility lost power or they had to evacuate? What was their plan? Did they even have one?

In a mix of concern and urgency I spent some time at the their facility talking with staff and management about their ability to withstand a storm, conditions under-which they would evacuate, how an evacuation would be executed and what notification would be made in the event that happened. The structure itself is pretty sound and to date they’ve never had to evacuate. In fact it is more common for family caregivers to evacuate to the facility and to stay with their caree on-site because it is safer than staying home. The facility is also on the highest priority by the local power company in the event of power outage for restoration of power and there is a backup generator system. A destructive weather plan is submitted to the state every Spring prior to hurricane season. They were better prepared than I.

Back at home I’ve stocked up on critical staples, hit the ATM and gassed up the cars. This storm didn’t appear to be a major concern. A Cat 3 hurricane doesn’t get folks here very excited and this one will not be a direct hit. However, it will be close enough, large enough and strong enough (now it’s a Cat 4 again) to be watched closely. I’m still mentally running through “what if” drills for me, two teenagers and a dog, but now I’m including my mom and dad.

She was a woman who was always in good health until her mid 80s when she was diagnosed with ovarian cancer. She went through chemo treatments and the accompanying loss of her hair. In the end, however, her numbers begin to rise again; and the cancer once more reared its ugly head. She has been under Hospice care since Spring and in bed continually since early June.

She is with her Lord right now in heaven, and we are happy for her. We are sad in our loss, however.

We all knew that a funeral was in the not so distant future. I had been thinking about Wayne’s attendance at the funeral for awhile, but I really started thinking and worrying about this recently.

Wayne’s tendency for extreme fatigue and need for an exorbitant amount of sleep is very high. If he has an event one day, he will often “crash” the next day and sleep all day. If he gets really tired, he really can not function the next day. Hence, Wayne and I had just talked; and we he had decided that he could not attend BOTH the viewing and the funeral. He just would not be able to handle that. Since he would prefer to go the funeral, he will not be able to go to the viewing.

I will try to go to both. The only problem with that is that I can leave Wayne for a couple hours, maybe three hours or so, but he will have to use the bathroom at some point, and I might have to leave also at some point to go home to help him to the bathroom. I will try to get something in place so I can be there the whole time for both the viewing and the funeral.

I am feeling very emotional right now. On Tuesday night I attended the funeral of a friend from our church, and now we will be having a funeral for my mother-in-law. The emotions all seem to blend together with the feelings of grief I sometimes have because of Wayne’s declining condition.

It is not a grief without hope and joy, however. I am glad that my faith and God’s Word gives me that hope and faith. Without it I could not function. With it I can persevere.

During our discussion, we shared ways you can work your money, rather than work your worry about money. Ellen encouraged us to stop the struggle we create when what our life (and how money relates to our life) isn’t what we think it should be. When we focus on the reality, rather than fret over the lost expectations, we can minimize our stress.

Create a Spending Plan, Ellen suggests, so you can reassess and then readjust your money flow. Set a goal of having six to 12 months of a cash cushion. And, express gratitude about your financial situation and the power you have to make it what you want.

To help you, Ellen suggested the following resources:

The Savage Number by Terry Savage

Why Good Things Happen to Good People by Stephen Post

And, I added:

When Bad Things Happen to Good People by Rabbi Harold Kushner

The Lord Is My Shepherd, The Healing Wisdom of the Twenty-Third Psalm by Rabbi Harold Kushner

(Editor’s Note: With Earl heading for the East Coast, take time to plan so you and your caree remain safe. The Centers for Disease Control has information about preparing for hurricanes here. If your caree resides in a facility, be sure to check with facility about its evacuation plan and how you can prepare.)

Related Articles

• Money, Stuff and Happiness (caregiving.com)
• The Chemistry of Happiness (caregiving.com)
• Vacation Talk (caregiving.com)

Even worse, you may feel that these decisions—from the simple to the series—are made in solitude. It’s you. It all rests on you.

So, today, we’ll talk together about caregiving decisions. And, today, I’d love to know: What’s the best caregiving decision you’ve made to date? How did you reach your decision? And, what’s been better because of the decision?

Resources

• To last caregiving, embrace your limits. Explore the power of your limits in a Caregiving Class; details here.
• Your Caregiving Journey airs this morning at 11:30 a.m. CT; listen live here.
• Meet us in Chicago; sign up for for November conference/retreat.

Related Articles

• Tell Us: Does Crying Help You Survive Caregiving? (caregiving.com)
• How Will You Embrace Your Limits? (caregiving.com)
• Decisions from the Head and Heart (caregiving.com)
• Three Voices of Caregiving (caregiving.com)
• How Do You Feel Safe? (caregiving.com)
• Tell Us: How Do You Describe Your Caregiving Role? (caregiving.com)

We started out by being interviewed a couple of months ago. Once the four couples were selected, we started meeting. The panel consists of four married couples. In three cases the husband has MCI and in the fourth case the wife has EOAD. In every case where we have met people affected by these diseases, everyone is very nice and has absolutely nothing in common. I mention that because Steve and I try to figure out if there is a common denominator, and aside from being married, we’ve found nothing.

So far the participants have met twice over dinner. We have two more scheduled meetings. At each of the meetings we have discussed specific topics. At the first meeting we spent time introducing ourselves, then moved into discussing earliest symptoms, how the problem was recognized, how the diagnosis was made and the reaction to the diagnosis.

The second week everyone felt more comfortable and we discussed how we have told others about the disease and the impact it has had on family. This is where we talked a lot about our son who has just started high school. One other couple has college-aged children, and the other couples have grown children. I talked about the double life I lead, being honest with some people and outright lying to others. Steve describes it as a “need to know” basis. For example, all of our neighbors except one think that Steve is retired. I am sometimes caught off guard when they ask if it is bothering me to have him at home. I actually enjoy the time I spend with Steve, but wish he wasn’t here at home, only because that would mean he was healthy and working. He so desperately wants to go back to work at his old company. Only time will tell if that will happen.

At our next meeting the topics are the hardest part of living with MCI or Alzheimer’s and coping strategies. For me the hardest part is the most obvious: that the love of my life has this challenge and there is nothing I can do about it. I can be as supportive as possible, prepare and serve healthy meals, encourage Steve to take walks, support his efforts to take classes, expose him to new experiences, and put him into situations where he has to socialize with people, but there is no guarantee that anything I do, or come up with to do, will keep him stable. The other things that are hard are minor in comparison, but they are that I no longer have my parents here to support us during this, continuing to be a good wife and mother, and juggling our son’s schedule and anything that needs to be scheduled for Steve. I feel bad when scheduling something for one takes away from the other in my opinion.

Answering the question about coping strategies is easy. I blog here. And frankly, I don’t focus on the problem, I try to keep a positive attitude, and I try not to think negative things about the future.

This has been an interesting experience. I like listening to everyone’s stories. I can handle the scheduling dilemmas because it’s almost over. I think the hardest part of these meetings is listening to your spouse talk about this disease and the changes it has made in them. I know I’m not the only participant who feels this way as there were a few people in tears last time.

I will write again about the panel discussion once it’s over in a couple of weeks. Ending this on a light note, I’ve already decided what I’m going to wear! At least that’s one challenge solved.

In September, we’re saving. Participants in our project will share what they’re joining in our comments section, below.

Would you like to be a part of our Happiness Project? We’d love to have you! For details and to sign up, go here.

An increased need for solitude, and for the company of only a few intimates, is one of the traits Dr. Tornstam attributes to this continuing maturation. So that elderly mother isn’t deteriorating, necessarily — she’s evolving.

Dr. Tornstam’s theory of gerotranscendence also includes an explanation for an older adult’s confusion with past and present.

“People sometimes describe their perspective on time changing,” Dr. Tornstam said. “They feel they can be children, middle-aged and old at the same time.” If an 80-year-old describes this sensation to a contemporary neurologist, the doctor might jot in his notes that the patient seems improperly oriented in time and place.

“What I’d like to tell grown-up children is that your mom or dad might develop into someone different than they were in middle age,” he replied. “Don’t automatically label what they’re saying, doing or thinking as a symptom of something bad.”

Dr. Tornstam does make it clear it’s important to distinguish gerotranscendence from a cognitive decline.

While reading the article, I remembered an email from a family caregiver from several years ago. The family caregiver cared for his father, who spent most of his day just sitting. The family caregiver fretted at his father’s lack of activity. What could I suggest, the family caregiver asked? I suggested that, in the sitting, his father was probably quite content. I also suggested he take advantage of the sitting by spending a few moments of conversation (about his father’s life, for instance) and quiet time together.

I also remember a friend recounting his grandfather’s care of his grandmother. His grandfather took his grandmother out to lunch every day. “She never wanted to go,” my friend said.

We’re a people in a constant state of doing. When we’re not doing, we’re in the process of planning what we’ll do when we’ve finished our planning. And, of course, the last thing we’ll plan is the time during the day when we just sit.

As we age, I think we move to the contented state of being. The doing is done. Instead, we reflect, we take stock, we absorb the meaning of all that doing we did.

What do you think? Do you worry about the amount of time your caree sits? The lack of interest in large gatherings? What changes (outside of cognitive decline) have you noticed as your caree ages?

Related Articles

• Aging’s Misunderstood Virtues (newoldage.blogs.nytimes.com)
• The Five Qualities of a Stellar Family Caregiver (caregiving.com)

It also looks like we will be able to continue with the Medicare paid therapy for Wayne. For awhile it looked like today might be the last day, but now it looks like we will be able to continue. We do not know for sure yet. We should know in a couple days for sure.

Finally, I would like to share a poem that my sister sent me the other day when I was feeling down. I wanted to share it with my caregiving friends, so I have it posted below. I hope it proves to be a blessing to all of you.

Prayer for the Caregiver
by Bruce McIntyre

Unknown and often unnoticed, you are a hero nonetheless.
For your love, sacrificial, is God at his best.
You walk by faith in the darkness of the great unknown,
And your courage, even in weakness, gives life to your beloved.

You hold shaking hands and provide the ultimate care:
Your presence, the knowing, that you are simply there.
You rise to face the giant of disease and despair,
It is your finest hour, though you may be unaware.

You are resilient, amazing, and beauty unexcelled,
You are the caregiver and you have done well!
______________________

Why can’t we also dream during the day? Why can’t we dream of the life we want?

Why bother, you may say, my dreams will never come true. They can’t come true during caregiving.

Maybe. And, maybe not. Dream:

• You stand your ground with grace and self-respect with those who would like to undercut your efforts;
• You see and embrace the moments of joy present each day for you;
• You live a life that reflects your values;
• You continue to enjoy those activities and hobbies that lighten your step;
• You look back at your life and can say: I’m so glad I did that;
• You evaluate your needs and then take steps to have them met;
• You look back at your life and can say: I’m so glad I said that;
• You have a bank account that allows you to make your choices;
• You consider your wants and then go out and get them;
• You have relationships which you love and which love you right back;
• You look good when you walk into a room (any room).

You have so much to dream about. Close your eyes. Dream.

Last week, as I was doing errands, I noticed that it was not often that my eyes met with someone else’s.  We are all in such a rush at times.  So I began thinking about the different looks in peoples’ eyes.

This morning in church I got spoken to!–by my mother’s eyes.  She does not make a lot of eye contact with  me, this is pretty recent.  I was trying to open a piece of candy during the service and I guess it was a little loud.(:   She actually gave me that “mother to daughter” look that I was being too loud!  This is the first time in a looong time that I remember seeing the mother-daughter look, instead of the mother to caregiver look.  It was a good thing!  Made me smile and I actually liked the feeling of getting in trouble by her for something other than a caregiver confrontation.

There is a lady who cares for her husband at the church we attend.  I would say she is in her early to mid- 80s.  We always exchange a few words each Sunday and I look forward to seeing her and her husband (her husband is in a wheelchair, as is my mother on certain Sundays).  When we talk, we talk face to face and I do have a chance to look into her eyes.  I’m trying to find words to explain her eyes… she looks tired, a bit sad, preoccupied, but appreciative for the conversation.  I was thinking how obvious someone’s needs can be when you do look at their eyes.

I think often times a caregiver’s eyes can look like her’s.  So…can those looks ever be changed?  I think sometimes I might look like that, and I don’t want to.  I have been trying lately to not be preoccupied with caregiving (too much).  There is so much to think about that it is hard to think of other things at times.

I have been wondering: Do our eyes reflect what we see the most ?  If that is true, I need to work on filling my eyes with things that are happy, as well as not seeming preoccupied to the kids.

Last night, there was a Riverfest near our town.  As I was taking the trash out, I just caught the ending of the fireworks that they were having.  I called the kids and Greg to come out to the back deck.  We had so much fun sitting and watching the fireworks.  Aware of this post, made me more conscious to talk about the fireworks with the kids and try not to think of what needed to be done next for my mother’s bedtime.  It worked!

I hope one day my eyes will start to show that I can think of other things, naturally, along with caregiving.