The Life & Times Of Wayne Alan Sipe

Now that he has moved to the life hereafter, I am no longer invading his privacy when I tell you that “W” was Wayne Alan Sipe.  Master Magician, Master Puppeteer, Entertainer, ally of children and those whom society often dismisses.  He lived and loved to make people smile and to make someone’s day (or night) a little better.

At the end of August, I held a “Celebration of Life” for Wayne at Peregrine’s Landing at Peachtree Creek (his care facility).  We shared stories, ate ice cream and watched a slide show of his life and times.  I shared stories of his growing up, living all over the world with his military family (Germany, Vietnam, Iran, and Rio) as well as his times stateside in Fortville, IN, and Bazine, KS.  We looked at his college years at Hays State College, his first marriage and service in VISTA, his time at University of Oregon (where he and I first met), his adventures in Hawaii and Las Vegas between his divorce and our re-connection in 2001, and some of our adventures together.  If you wish to see it, you can see the slide show by clicking on the link below.

I am truly blessed to have had this man in my life, and it was a privilege to be able to walk him “home.”

Wayne Alan Sipe Slide show

GRelIEF

I am an odd widow.  I am not weepy, or depressed, or sleepless.  I am able to laugh, participate in events, and carry on.  I feel like people expect more.  More sadness, reclusiveness, angst.

But the loss of a loved one to Alzheimer’s is an odd combination of grief and relief (“grelief”). You loose someone an inch at a time. You grieve the losses an inch at a time. And when it’s finally over, it’s hard to know how to act.  On one hand, your loved one dead…no longer physically present.  On the other hand, it is as if you and they have been set free.  Free to live and dance and let go of the constant anxiety of not doing enough, of split attention between work, home and loved one.  And so, you’re not completely sad, bereft, heartbroken, grieving.

It feels a bit, I don’t know… unseemly?  Inappropriate?

Whatever it is in the eyes of others, it is true for me that the sadness at W’s death is totally mixed with the relief of his long passing.  They call this “the long goodbye,” and I think that’s a good description.

About a year ago, I had a memorial service of sorts for W, because that was the point at which we were no longer sharing the same home, the same bed, the same day.  And it felt like he had died.  This last week, the other shoe finally dropped.  Last year’s service helped me span the gap in time with some ability to be present to my beloved.

 

Cross-fade

Four weeks ago, W was walking, talking and seemed enough “OK” that hospice was planning to discharge him.  Then, about 3 weeks ago, he took a sudden turn for the worst.  Wheelchair mobile only, needing to be fed by hand (like a child), little conversation.  He continued to decline, until August 7th,when the hospice folks declared that he had begun “actively dying.”  (A strange term if there ever was one.)

I arranged for 24 hour care for him at Peregrine’s Landing (his care facility), so that I could get some sleep and make arrangements for our dogs, etc.  I wanted to be there when he breathed his last, but reconciled myself to the fact that HE might not want that.  (After all, a good magician mis-directs folks before they disappear, so that the particulars of the trick are not seen.)

Knowing the end was near brought some relief and sorrow, but it also kept me on edge waiting for the other shoe to drop.  I found myself sometimes wishing he would not keep dragging things out.  (I’m not proud of that, but it is the truth.)

On Wednesday, August 12, it was clear that he was in his last day.  I sat with him all day (the continuing care person no longer needed), watching him breathe, breathe, breathe, pause………. breathe, breathe, breathe, pause.   I kept my hand on his arm or sternum throughout so that he would know that he was not alone.  I spoke to him, telling him that I would be ok, the dogs would be ok, and that he could go ahead and relax into God.

For the last two minutes of his life, my hand on his sternum, I kept repeating, “I love you.  I love you.  I love you.  I love…”  without end.  As he breathed his last, I know that the sound of my voice grew dim, and the voice of God grew louder saying, “I love you.  I love you.  I love you….” without end.

end of life

The steadfast love of the Lord never ceases,
God’s mercies never come to an end;
they are new every morning;
great is your faithfulness.

~ Lamentations 3:22-23

(Source: Shutterstock)

Grace in the Midst of it All

amazing-grace

W is now at the point that he needs to be fed by others and he is unstable enough that he is usually in a wheelchair.  Even as I say that, there ARE days when he is ambulatory, active and alert.  The disease seems to manifest in such an uneven, unpredictable way.  I hardly know what to expect when I see him, or when I receive a call from Peregrine’s Landing.

For the most part, W’s personality has remained the same even as his dementing progresses.  There are some things that are showing up that are a bit of a surprise to me.  I suspect that many of these things are traits that he held in check.  W was never one to be openly vulnerable to others; he liked to be the “entertainer” so much so, that you often felt like you never got to talk to the real him.  And you could hardly ever get a straight answer!

Even though he does still put on his “entertainer” personality occasionally, I’m finding that he’s showing affection and letting himself be seen more than before.  And, honestly, I kind of like that.

For example, W was always not one for public displays of affection, but now he will often reach over for a kiss or want to hold my hand, almost like a little kid, even when we are in the middle of one of Peregrine’s Landing group activities! He once gave me a kiss while he was receiving communion from me… first time that’s happened… ever!

He will also display genuine happiness or joy more than he used to… smiles of satisfaction and pleasure will come (often when he has made us laugh with a joke or a one-liner).  He smiles when I visit, sometimes… once he even said, “When I see you, I go Ahhh!”  That made me tear up, and it made my day!

His religious faith is also more evident that it has ever been.  When he was in great distress (before we got his meds balanced), he kept saying things like, “Is God mad at me?”  “Oh, God… what is going on?” etc.  Now, when we attend worship services together at Peregrine’s Landing, he recites the Lord’s Prayer and sings the hymns… something that he never used to do.

As crazy as it sounds, I’m grateful to the disease for these glimpses of his interior life.  Without it, I’m not sure he would ever have been as vulnerable and transparent.  It’s a bit of mercy and grace in the midst of an otherwise undesirable situation.

Hospice

I recently realized that I had not updated this blog on W’s condition for a while, so here goes.

The week of Valentine’s Day, W was in the hospital.  He was admitted to the ER after having a 24 hour bout of extreme diarrhea.  The ER folks believed that he perhaps had a bug and perhaps a bit of pneumonia.  This is when I failed my first “test” of following W’s wishes.  They asked me if I wanted to treat the pneumonia, because if not, it might mean that his life would end in a matter of days.  I really struggled, but said “yes, treat him.”  Though I felt terrible for betraying his wishes that way, I realized how much I was NOT ready to let him go just yet.

Subsequently, the doctors decided AGAINST treatment of the pneumonia because antibiotics would make the diarrhea worse and further dehydrate him (thus rescuing me from my failure).  So they admitted him and kept him hydrated.  For five days, he mostly slept.  He had no interest in food or water, wouldn’t get up, didn’t respond, etc.  When he was awake, he was saying “goodbye” kinds of things  like “I miss you already”  and flashing back to his mom and dad. I spent most of that week by his side and in tears. In a certain way, I was able to let him go, and reconcile myself to his eventual death.  As the week progressed and he was still pretty unresponsive, I asked the doctor if he thought that W was trying to tell me something…that he was done.  I explained about W’s advanced directive (no artificial prolongation of life), and wondered if it was time to think about palliative care.  The doctor agreed that he would call the palliative medicine person and they would talk with me and do an assessment on W.  That whole process resulted in a recommendation that he be put on hospice.  I agreed.

Thankfully, I have a few clergy colleagues that recommended a local hospice service that they thought did a great job, so I called them.  (Wellstar Hospice).  They helped me get W back to his care facility with a hospital bed and a commode chair.  Their physician is now W’s primary physician, and the hospice folks provide weekly visits by a nurse, as well as other care support services.

The first day or two he was back at his care facility, he was unable to stand.  However, he soon “bounced back” and was walking around, talking, eating and acting like normal. (Well, as normal as he ever is!)  I was worried that they would take him off of hospice after the first 90 day period.  [The Social Security requirements for dementia patients to qualify for hospice are pretty strict… usually require that the patient can’t say three words.]  However, the hospice folks have determined that W still qualifies because his communication is pretty nonsensical and because he has lost so much weight (15+ pounds in two months).  So he remains on hospice even now.

It is very helpful to have hospice involved.  For one thing, we now have a real DNR.  Apparently (at least in Georgia) an advanced directive does not qualify as a DNR (Do Not Resuscitate) order… that has to come from a physician.  The hospice physician provided one for us.  The hospice folks have also been able to review his medications and determine what is really not needed at this point (blood pressure medicines, multi-vitamins, etc.) which is helping to save a bit of money.  It’s also been nice to have another set of “eyes” on W and someone to consult with about what is/is not to be expected.

I will close with a picture of a book that I found very helpful in learning about hospice.  The movement has gone through a number of changes and challenges, but I continue to believe that it offers a wonderful complement to other care that a terminal patient receives…. and it is a gift to the family members of that patient.

ChangingTheWayWeDie_book

Field Notes, Tool Kits and Wishes

Over the past few months, W has had his ups and downs… but the trend is definitely downward.  He has been in the hospital several times, and is now on hospice, though he is still ambulatory.  Here are some of the things I’ve learned over these months.

Field Notes for Times at the Hospital 

  1. Carry a charger for your smart phone with you… you never know how long you might be in the ER/hospital and have need to re-charge.
  2. Follow the EMTs or ambulance in your own car, else you’ll be stranded at the hospital and have to take a cab back to where you’ve left your car.
  3. Carry your Kindle with you so that you have access to books and music while you’re at the hospital.  (I have a play list for W on my Kindle so that he can listen to some of the music that he remembers/loves.)
  4. Have back-up dog care (with a key to your house) at all times, so that your pets can be attended to while you are with your loved one at the hospital.
  5. It is helpful to carry a nutrition bar and/or water in case you get stuck in a place where you are unable to get food.
  6. I have been greatly helped by the ability to post W’s status on Facebook and other social media when he winds up having to go to the ER.  It helps me feel less alone in the situation.  (Our family is about 3000 miles away.)

Tool Kits

IMG_4682 IMG_4685

I have learned that there are some things that I have to do for W, or they won’t get done.  The staff members at his Assisted Living facility either don’t want the liability, don’t want to spend the time,or whatever to do certain things.  For example:  if I don’t trim W’s fingernails or clean his ears, it won’t happen at all.  So… I’ve taken to carrying a “W visitation” kit in my purse.  It contains the following:

  • nail clippers, nail file, and orange wood sticks for taking care of his nails
  • glass cleaner and cloth to clean his glasses
  • Permanent markers (to mark his shoes,etc.)… unmarked things tend to get lost
  • chap-stick
  • cotton swabs for cleaning ears,nose, etc.
  • creams for hands,feet and dry skin
  • antibiotic ointment to treat skin tears, etc.

Wishes/Notes to the Professionals

  1. I love it when the care team shares stories about things that W has done when I’m not there.  I especially appreciate funny or tender stories.  It gives me some comfort that he is OK and happy in this setting.
  2. I wish that care professionals would not talk ABOUT my husband or ask me to talk ABOUT him when he is right there. He is still alive; he can still hear and relate (to some degree). So I would prefer that he be included in the conversation when he is present.  If you want to talk about him, we can make arrangements to step aside into another room, or wait until he is not there.
  3. I wish that the facility where he is living would communicate more with the families.  It would be wonderful to have a quarterly meeting with the staff to get an update on his status, any concerns, etc.

Looking Back at 2014

W’s Year in Review

Mid-way through the year, W had to be relocated to a memory-care only facility.  In the place where we had lived for 8 months, the memory care unit there proved too small (in square footage) for him.  He got very aggressive and had to be sent to a psych hospital for 1.5 weeks.  While there, the doctors were able to adjust some of his meds so that he was less aggressive and/or frightened.  I truly believe that the combination of the lack of appropriate meds and the tight confines made him feel trapped and frightened.  So, after the psych hospital, he relocated to Peregrine’s Landing at Peachtree Creek in Smyrna, GA.  He has settled in very well.  The facility is pretty large, with lots of safe outdoor space, activities designed for dementia patients, several community pets (dog, pig, chickens, fish, etc.), and so on.  W seems to have developed his own routines, has a playful relationship with the staff and is generally doing pretty well.

That said, his dementia continues to progress.  His world seems to have shrunk considerably.  For instance, at one of the facility holiday events, there was a young child present.  W didn’t even notice her, while in years past, he would have gravitated to her and wanted to interact and engage her in conversation.  He often seems to be looking off into the distance or living behind closed eyes (see photo below).  When I ask him what he’s seeing, he can tell me about cats, dogs and other things he sees.  Previously, he’s had a lot of visual mis-perceptions… hallucinations, etc.  One of our doctors said that his eyes are functioning correctly, but that his mind does not translate the data correctly.  So, I have chosen to believe that he is living in a world that his eyes/mind can see because the world in front of him doesn’t make any sense to him.  His visual field for the “real” world seems to be about 4′ though his hearing radius is much greater.

He seems to know me, or at least he knows that I’m someone familiar.  I’ve been able to have several “sleep overs” with him, and he seems to enjoy the opportunity to cuddle and be together.  He also enjoys it when I rub his feet, put moisturizer on his arms and trim his finger and toe nails.  He often says he misses waking up with me, but he doesn’t seem sad or distressed.  He is happy to see me, but not anxious or agitated when I leave.

 

My Year in Review

This has been a balancing act.  It is very difficult to feel that I am giving the appropriate amount of attention to W, our dogs, my work and myself.  I battle a persistent sense of  guilt.  I’ve moved into my own apartment with the two dogs.  The dogs miss the constant attention they got from W and the residents in the Assisted Living facility that was our home for 8 months.  They don’t get nearly enough exercise and play in our current situation, but it’s the best I can do.  I’ve considered surrendering the dogs to a rescue organization, but am torn because the one thing W would want me to do is to take care of the dogs.  And I don’t want to give them anymore stress than they’ve had.  So, we’re finding our way into a new way of being family.

Because it appears that I will need to work until I’m age 100, I determined that I needed to get more fit.  So I joined a gym and work out about three times a week.  I also work with a trainer who pushes me to try new and more difficult things.  I am feeling much better, stronger, and have a lower (I think) stress level.

I am slowly learning to live with a bi-county marriage (and a bi-reality marriage).  I miss W a lot and look forward to seeing him, but at the same time, I find myself anxious and dreading visits, because I never know what frame of mind he’ll be in.  Often I traveled the 30 minutes it takes to visit him, only to have him tell me “thanks for coming, bye” after 20 minutes.  This is a bit frustrating.  I also notice that when I’m there in the evening and he begins to do his sun-downers thing (often Alzheimer’s patients get agitated and restless as the sun sets, possibly from fatigue and possibly from the diminishing light), I want to flee because I don’t like to see him that way and I don’t know what to do.  I hope to grow in my ability to stick with him during these moments.

On the upside, I’ve been able to have  a few “sleepovers” with W and those are wonderful.  I don’t get a really good night’s sleep, but am so grateful for the chance to hold and be held with the man I love.

I also find that I must be attentive to the slippery slope of medical protocols.  W had indicated that he didn’t want extraordinary measures and that he wanted me to let him age the way he was going to age.  So, I am constantly debating with myself about what medications and procedures are appropriate.  I am working on a palliative care model which means that I want to keep him comfortable (pain free), safe and manageable.  It seems to me that the “industry” of senior living and dementia care is seen as an opportunity for fee generation by many of the providers.  Often a visiting nurse or physician will say, “we can get this for W… medicare pays for it.”  Most recently, someone wanted to order diabetic supplies including insulin.  W is not a diabetic –  never has been.  When I asked if the staff had reported any behavior that might indicate an imbalance in blood sugar, I was told ‘no.’  So, I had to explain to the person that I saw no reason to have my husband have to prick his finger every day just because medicare would pay for it.  Likewise, I decided not to make him have his colonoscopy this year… that would just be cruel.

Financially, the year has been an adventure.  I continue to nibble away at my retirement savings, but so far, it seems to be working.  During the year, I was able to sell W’s business, resulting in a reduction of $10,000 per year of expenses.  I’m thinking about the possibility of purchasing some income property so that my money works for me and helps to generate cash flow.

As 2014 comes to a close, I am thankful for the moments of joy we have, even in these less than desirable circumstances.  And I am thankful for friends, family members and caregivers who provide support to me and to W.