“Caregiving is not easy. I can’t imagine care-receiving is either.”

Dana, a new blogger on Caregiving.com, (Welcome Dana!) made the above comment and it reminded me of one of the “joys” of sandwich caregiving especially when your kids are teenagers. My kids see my parents and have heard our family history (on both sides of the family we live a long time (90′s-100′s) and die with dementia). My kids are waiting for me to become my parents; in fact they have already begun plotting.

My son and daughter talk about what they intend to do with me in my senior years when I’m “forgetful and helpless”. They’ve already made passionate promises about how they’re going to take care of me, wheel me around in my chair and how I’ll never have to go into a nursing home.

I would almost think of it as thoughtful, except that they:

(a) like to do it in front of me… as if I’m not in the room and

(b) believe that the forgetful and helpless part has already started to happen.

My response usually runs along the likes of the famous Bill Cosby line, “…I brought you into this world and I can still take you out!”

It does make me wonder however, if this is how my parents felt as my brother, sister and I began our “plot” as we observed changes in Mom and Dad and wondered what to do about it. Our parents later encouraged us to do exactly that, to begin planning, not realizing we had begun several years prior behind their backs. Their parenting style did not lend toward making this a corroborative effort. It was always going to “us vs them” but at least at one point, on some level, they recognized that the need existed.

Care receiving isn’t easy. No one grows up planning on becoming a care receiver. Yet for most of us, that is what we have to look forward to. Fortunately with us aging Baby Boomers, the financial and estate aspects of getting older are getting overdue attention but perhaps more needs to be said about our attitudes as well. How good are we at allowing others to help us?

My kids and I talk about this. I assured them that I’m going to be as stubborn and difficult as possible.  :-)

Still, it’s disconcerting to have your kids hover around you, looking for any sign of degradation. But while they’re watching me for any signs that I’ve become my parents, I’m watching them daily become me.

And they don’t understand why I look at them and smile.

Holly spoke about conversations she and Dave had had after the diagnosis of frontotemporal dementia and about end-of-life. Holly shared her thoughts about how to respond when a caree talks about a diagnosis and death. When Dave talks about dying because of his diagnosis, she responds truthfully. She doesn’t sugar coat the situation by telling him he’s not going to die. Her core value is the truth, so she speaks truthfully about his prognosis.

We also spoke about how doctors can do more to help a family caregiver and caree when talking about a diagnosis. Dave’s doctor discussed the diagnosis, told them there’s nothing he can do. He then shared a pamphlet from the Alzheimer’s Association. That was it.

We talked about how helpful it would have been if Dave and Holly had been introduced to others in a similar situation, how comforting it would have been to know they weren’t alone and that they would be okay. (Note: We’re recruiting former family caregivers to volunteer for just these situations. If you are a former family caregiver interested in volunteering to help one of today’s family caregivers, either in person, on the phone or via email, then go here for details.)

I’d love to know: What conversations did you have with your caree after a diagnosis? What kind of experience did you have with doctors and health care professionals when your caree received a diagnosis? Please share your experiences in our comments section, below.

Reminders: Solitaire Showdown is Sunday (January 15) from 1 p.m. ET until 5 p.m. ET. High score at 5 p.m. ET wins $50. Details are here. If you work and provide care, be sure to download our free e-book, The Working Family Caregiver, here.

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Dad is back in his facility and resting comfortably. No specific caused found his seizure but we’ll be making the rounds of the Dr’s in the days and weeks to come. I learned that the original seizure occurred in the shower so I’m feel blessed that Dad didn’t get injured in there.

I need to buy flowers for the staff.

When I returned from the ER with Dad, I went and checked on Mom. She was sitting comfortably in her room alone, oblivious that anything out of the ordinary had happened at all. When she saw me she proceeded to run down every family member she could think of.

It was a strange list in many ways. She started off by asking me if my mother was alright, to which I answered she’s fine, she proceeded to name my brother and pronounced him fine, she named several of her sisters, many of whom are also dead… and pronounced them fine, and she named several more people, who were actually alive thankfully… and summed it all up with

“… and everyone is fine!”

She’s right you know. We are.

I usually answer vaguely, “It was interesting…”

As you know from my last post the Christmas holiday began with my wedding anniversary which meant a trip to the cemetery and commemorating my wife’s death. Dad’s physical state declined to the point that I wondered whether he was going to live through the end of the month. Several times I came close to calling in family to say good-bye.

Christmas Day my daughter dislocated her elbow. Two words “tram” – “poline”. Nuff said!

The fact that we were at a medical professional’s house when this happened is the only thing that saved us from a Christmas afternoon in the ER. After Christmas we did the rounds of x-rays, MRI’s, etc before she starts physical therapy.

Physically I saw some slight improvement in Dad, which has led me to hold off the family call to my sister but Mom’s mental state is declining. For the first time she is becoming verbally incoherent. Not all of the time but increasingly I’m having a hard time making out individual words.

Overall the kids have classified this as a very good holiday. Even my daughter, arm in a sling, has mostly been happy.

I’m writing this from the ER.  My Dad had a seizure this morning and for a while was unresponsive at the nursing home.  He was rushed to the hospital and I was contacted. He’s stable now and we should get released soon.

I know not to predict outcomes. Dad could be with us for some time to come but after the deaths of my wife and brother…

I’m going to call my sister tonight.

Today I saw new “Welcome Home” banners posted on the fence line outside the base. A unit must be returning soon. I pray they make it back in time for Christmas, it’ll be close. I remember those days and smile, happy for the returning Marines and their families.

Today I took my Dad to yet another doctor appointment. This was follow-up from the latest round of tests. I was actually hoping for something straightforward like a urinary tract infection. At least that is treatable and would explain the symptoms he’s experiencing, the exhaustion and physical decline. Instead the tests were all negative; a good thing of sorts but I’m left with the painful thought that I’m losing my Dad and once again there is nothing I can do. The morning appointment wiped Dad out and when I checked on him in the afternoon he was sleeping again.

Today I noticed Mom is getting comfortable apart from Dad. Given the direction Dad is heading this could be construed as a good thing. It is significant though given their 66 years together. I also notice Mom is having a harder time recognizing Dad. Also significant given their lengthy marriage.

Today would have been my wedding anniversary. I bought a rose and an anniversary card. The card said in part, “For my wife, wishing we could be together on our anniversary… I hope you know how very much I love you.” I laid the rose on my wife’s grave. The card I’m keeping.

Tomorrow is Christmas Eve. I’m ready for today to be over.

Steve’s final words were:

OH WOW. OH WOW. OH WOW.

Kinda gives you goose bumps, doesn’t it?

I was with my aunt when she died. As she died, one tear rolled down her cheek. (My aunt died before resolving rifts with one of her daughters; I’ve always thought the tear was one of regret.)

So, I’m wondering: Have you been with a family member when he or she died? If so, what was it like? Please share in our comments section, below.

Updates

1. Your Caregiving Journey airs tomorrow. On Tuesday morning at 11:30 a.m. ET (10:30 a.m. CT, 8:30 a.m. PT), Elizabeth Lombardo, our happiness expert, joins me to share how a good start to your day can help you create a good caregiving day. And, Tuesday evening at 7:30 p.m. ET (6:30 p.m. CT, 4:30 p.m. PT), our live, call-in show airs. Call us to share your answer to this question: What do you know about caregiving that the world doesn’t? Listen to our shows here.

2. Do you need a package of adult size small Depends? Bette received the wrong size Depends; if you need a size small just contact her through her ad on SharingStore.com here. She’ll send them to you at no charge.

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We talked about the importance of including Hospice in your caree’s care plan as well as its benefits to you and to your caree. Medicare includes a benefit for Hospice and can be used wherever your caree lives—your home, your caree’s home or the nursing home.

Claire described the general guidelines which may mean your caree is ready for Hospice:

1. Your caree cannot dress without assistance.

2. Your caree cannot walk without assistance.

3. Your caree cannot bathe without assistance.

4. Your caree is incontinent of bladder and bowel.

5. You caree can not have a meaningful conversation.

I also added that your caree may tell you that he or she won’t be around much longer or is ready to go. Rather than discounting a caree’s comment about his or her death, consider it invaluable information.

I hope our show helped you feel more comfortable about Hospice. You can never call Hospice too early. But many family caregivers have told me that the regretted calling Hospice too late.

Please feel free to share any questions you have about Hospice in our comment section below.

Updates

1. Do you need a package of adult size small Depends? Bette received the wrong size Depends; if you need a size small just contact her through her ad on SharingStore.com here. She’ll send them to you at no charge.

2. Welcome to our new members! Be sure to send a note introducing yourself to:

–tgg8814, who cares for her spouse;
–jewlz224, who cares for her mother;
–punkie, who cares for her spouse;
–bfountain, who cares for her spouse;
–terrievaden, who cares for her spouse;
–ellen, who cares for her mother.

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Every where my brother went, he made a point of making eye contact and speaking kindly and directly to those who served him. Waitresses, maids, clerks, secretaries, no one escaped his orbit without personal interaction. Heaven forbid if you were wearing a name tag, you were fair game. At restaurants, my brother greeted and spoke to his servers as if he’d known them his whole life.

This has greatly influenced how I treat the nursing home staff who care for my Mom and Dad. You’ve heard how I like to “bribe” them with donuts and gift. Because of my brother, I don’t see them as faceless drones doing my bidding. They’re whole people with needs and concerns and challenges that have nothing to do with their job or my parents.

I also look at the other residents through this same lens. When I hear their stories, it never ceases to amaze me. They are pastors, lawyers, business people, fathers, mothers, in general accomplished people. Yet there’s no hint of it now. Still, they’re important to someone so I make eye contact, pat an arm or hand and by all means I smile and wave.

I learned how from my brother, who never met a stranger who didn’t leave a friend.

I informed my sister. I told my son and daughter. I let friends who had been praying and supporting us know. I didn’t have the heart to tell Mom and Dad.

Interestingly Dad, without prompting, asked me about his oldest son. I stammered an indirect answer.

I’ve been down that road of telling them about the death of a loved one. They can’t process it. It’ll only turn into an endless loop of “he’s dead…he’s dead…he’s dead” and each time they hear it, it is for the first time and it rips them apart each and every hearing.

I’ll probably come up with a more composed one later on.

Today, I’m just missing someone I looked up to as a hero.

Dr. Mast and I spoke about when your caree has had enough testing and, sometimes, treatment. In the beginning of your caregiving journey, you want as many tests as possible to ensure an appropriate diagnosis and treatment. At some point, too many tests cause more problems than adding solutions. How do you know when to stop? And, how do you stop what can feel like second nature?

As you consider more tests, Dr. Mast offered some questions to ask your caree’s physician and health care providers:

1. What will this test tell me?

2. What will the prep time be like for my caree?

3. What will the test be like for my caree?

4. How will my caree feel after the test?

Give yourself time to consider a decision about tests. Dr. Mast suggests the following as you face a decision:

1. Take time away from caregiving.

2. Review what you’ve already done.

3. Review what you already know.

4. Consider: How will this test change what you know and what you can do?

Your answers to these questions can help you decide how appropriate more tests are. You also can ask yourself this question: Is this test for me because I’m not ready to accept a diagnosis? Or, is this test for my caree because my gut is screaming that there’s something wrong?

I’d love to know when you’ve said enough to more tests for your caree. I’d also love to know if you wish you would have said “No” to more tests sooner than you did. Please share your experiences and insights in our comments section, below.

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