Sweet Moments

     I wish I'd had the camera ready earlier this week when 3-year-old David was down on his knees trying with all his might to help Grandpa put on his shoes and socks.  The little guy was not deterred, even when we stepped in to assist.  He stayed right there, putting his little head behind Grandpa's leg to see if the shoe was going on, or trying to help tug up a sock.

     A week or so ago, as 7-year-old Frankie passed our bedroom, he noticed Grandpa trying to put on his slippers.  I could hear Frankie trying to coach Bob to "just push your foot in" several times.  Then, at last, Frankie came to find me in the kitchen and asked me to go help Bob get his other slipper on because he just "wasn't getting it."

     Tonight, when 5-year-old Hope wanted to give Grandpa a hug goodbye, she seemed to realize that he wasn't understanding her intention since he kept wiping off the kitchen counter. She gently took the dish towel and glass from his hands, and then held out her arms so he would sweep her up into his--as he always does.

     These sweet gestures from our grand children are moments we treasure.

One More Step

     Today we began talking about Barby's departure.  She will have been here a full month by the time she heads home next week.  Her presence has been so much support on many levels--more than just helping with household tasks, she has been an encouraging and uplifting presence for both Bob and me.  She has been a great listening ear and sounding board, a strong support in facing hard choices.  I can't begin to express all that her being here has meant, nor ever thank her enough for making this "love journey," as one of her friends called it.
     As Barby leaves, we will most likely be entering another phase of this journey.  This past Tuesday, Bob's doctor referred him for hospice evaluation.  A nurse came today to begin that process and she feels he is eligible.  She still needs to meet with her supervisor and do some more paper work with us, so tonight the decision about eligibility is still pending.  
     "Hospice" is a heavy word, in a way.  It connotes ending, and sadness, dying and grief.  In many cases, it is clear that those connotations are imminent.   But for someone with Alzheimer's, that time is not as easy to predict.  Yes, it is a terminal illness with no cure.   Yes, there are "stages" one passes through more or less predictably.  But each person with Alzheimer's ultimately "writes their own story," as the neurologist in Marquette told us about 6 years ago.  And so, for example, there is a man in our support group whose wife has--as he sweetly puts it--"graduated from hospice 3 times."  She is now in hospice for the 4th time.
     So though we know Bob's journey is coming to an end, as all of our journeys must, we don't really have the more or less certain prognosis that might be available were he fighting cancer, for example. What we have is our lived experience that everything is getting harder at an increasingly rapid rate. And, of course, we have the expert observations of his doctor and the nurse evaluator.  And so we have taken this next step.  We take it, more or less as we all make any choices in life, trusting that we are doing the best we can.  In this case, we trust that we are doing what is best for Bob--preserving his ability to be at home with all of us, his family, who know his history and person better than he does now, and who love him with all our hearts.  We hope that this decision will also mean Bob can continue to enjoy family life and the antics of our grand children--even if only "from the sidelines" and as a spectator.   And so, at least for me, choosing "hospice" is reaching out to as many loving hearts and arms as we can to support us as we make our way through the ever-intensifying demands of living with Alzheimer's disease.  For now, thankfully, that is what we are doing:  living with Alzheimer's disease.

Revelation

    Bob's sister has been here since February 10.  Her presence, support, and help has been such a blessing to me.  The other day I was reflecting on all that she does--laundry, dishes, cleaning, meal planning and cooking, some kid-sitting--and I realized that up until her arrival I have been doing all of those things PLUS all that I am still doing for Bob and to manage our household and continued grand-kid-sitting.  I found myself wondering, "how in the world have I been doing all this?"  

    There is an encyclopedic-type book about Alzheimer's disease which is often referenced in care-giving circles, entitled The 36-Hour Day.  Since Barby has been here, I think mine has dropped back to a 24-hour day.  I have also found the space in my day (and in my mind) to start exploring options for more support, and a way to achieve that goal is beginning to unfold.

Helpful Insights

From an email to friends earlier this month:

      In the midst of all this, I've been trying to "deal with" myself and my feelings, and I have not been very happy with who I see.  I think I have begun to realize, though, that my impatience, frustration and anger are really masks for my grief and sorrow which are so much harder to face.  I've been re-reading a book I read a couple of years ago (Ten Thousand Joys and Ten Thousand Sorrows) by the spouse and caregiver of an Alzheimer's patient.  Early in that book, she writes:  "I felt a surge of impatience, then realized that the problem wasn't a need to hurry but my own grief at his growing disability.  Impatience was easier to deal with than feeling the depth of my grief."   The other night I came across this paragraph about half-way through the book:  "Amazingly, the truth was that even with all the signs--this relentless process of deterioration--some part of me still clung to the sense that under the confusion he was still well, that somehow he might even bounce back.  My mind automatically bargained: maybe this was just a temporary state of affairs.  He seemed so healthy in every other way.  How challenging to accept that this process was final, headed inexorably toward loss of mind, loss of communication, eventually death.  Much to ponder.  Much to open to.  Much to accept."  This paragraph really struck me because I had been pondering for a few weeks now whether I have yet arrived at a place of acceptance or was still (after 5+ years!) somehow meandering around in a place of denial.  That's why her words really reached me; it seemed that if she could have been in so much denial that it was possibly where I have been, too.  And then we got hit this week by Alzheimer's jumping out at us from every corner and in every minute of every day; it made it hard to deny though still very unwelcome!

     My hope is that now that I've recognized the ongoing denial I've been living in about Bob, perhaps acceptance will have a gentling effect and help strengthen the patience I long for, and lessen the frustration and anger.  As the writer of the book referenced above said, "this is the final chapter of your relationship."  I want that chapter to be for us as she describes is possible when she writes: "'Your loving doesn't know its majesty until it knows its helplessness,' Rumi wrote.  Some people may think that is a depressing statement, but upon reflection it becomes arresting and inspiring.  It acknowledges the fact--especially true in old age--that we become increasingly helpless. Fighting that reality causes suffering; acceptance of it frees us.  Although seemingly paradoxical, when we accept that we are helpless to change the realities of living with dementia--or loss of any kind--we may gradually discover the deepest sources of our loving.  For love enables us to handle the greatest challenges that life presents." 

The Changes Keep Coming

From emails written earlier:


Monday, Jan. 30, 2017

I've been looking for time to put all this into words, and then when I had the time, I couldn't muster the energy.  But tonight I may have both, and I feel the need to share.

It's been a hard week for Bob and me.  He seems to have lost a lot of ground this week.  Last Sunday (the 22nd), he took a nap in the afternoon and when he woke at 4:30 he was quite troubled and confused.  At some point, it came out that he did not know who I was and when I told him, that seemed to bother him even more.  He kept saying "that can't be," even after I showed him our matching wedding rings.  This went on for at least 90 minutes.  Hope was here and kept bopping in and out of our conversation, which seemed to help.  Several times, Bob laughed at her 5-year-old antics; I think that actually helped lift the fog for him.  Another thing that seemed to help was that the last time he looked at me saying,"that can't be" I asked him if we could just be friends, best friends even.  He seemed to like that more than that I am his wife, so I let that stand.  A couple of nights later over dinner he asked me "where did you come from?"  I wasn't sure if this was going in the same direction as Sunday, but suspected it might.  So my initial response was "from Illinois, like you came from Pennsylvania."  Then I added that we came here together to be with our grand kids.  That was met with a look of surprise and puzzlement, so I asked if he knew who I was.  He wasn't sure, and when I told him, he threw up his hands and began to cry, saying, "I'm sorry."  I told him it was okay, that it didn't hurt me because I know it is the disease that makes him forget.  Then to lighten things a bit, I tried teasing him about being disappointed that he's stuck with me for a wife,  and not someone else like Marilyn Monroe or Zsa Zsa Gabor.  That did make him laugh and changed the mood.

Then there  were a couple of nights where trips to the bathroom were a real frustration for both of us.  For him because he seemed so confused about what to do and why he was in the bathroom, and perhaps because he was resenting my telling him what to do because at least twice, he flat out refused to lower his pants and to sit down on the toilet--even though that was why he had gotten up.  The second night when this happened, he finally did lower his pants but then wouldn't sit down and kept trying to leave the bathroom with his pants around his ankles.  Worried about his safety, I kept trying to get him to pull them up but he absolutely refused.  I finally gave up and left in a huff to go back to bed.  I was really angry, not so much at him--though I expressed it at him--but at the powerlessness I felt and the terrible cruelty of this disease.  And I was very tired--this was at least the 3rd trip to the bathroom that night.  Fortunately, he returned to bed safely and was soon asleep.  I, on the other hand, could not sleep--full of regret about my angry outburst, but also still feeling angry and scared and helpless.  I did eventually fall asleep but woke in the morning still heavy with all those negative emotions.  Bob was already up and also still on edge.  We tried talking over coffee, but that is next to impossible for him--though he was the one who initiated it.  Instead, we ended up crying, both of us, and that ended in hugs, and was followed by breakfast.  But all that day, Bob seemed very helpless and followed me every where--even when I just went to get something in another room and returned right away.

He has also been tearful frequently each day.  Most of the time, the tears seem connected to something he's trying to do but can't (zip his jacket, put on his socks, for example) but sometimes they seem to come from something he is thinking about but, of course, he can't tell me what it is. Tonight, when we were watching Hope, he disappeared to the back of the house at one point and I heard him crying softly.  When I went to find him, he was standing back by the washer with his head in his hands.  It broke my heart to see him so lost; this has never happened before when the kids were here.  (Hope was busy setting up a tea party in the dining room so she wasn't aware of it, and I got him to come join us for the tea party which seemed to make him happy.)  Because of all this, I emailed his doctor who prescribed the antidepressant and asked whether we could up the dosage a bit. The psychiatrist was out last week, but his nurse said he will likely get back to me about it this week.

In addition, I have noticed a HUGE increase in Bob's inability to understand words.  I have asked him to get the dish towel and he goes to the refrigerator, have suggested he brush his teeth and he starts taking off his shirt--lots of things like this every day this week, much more than usual.  We stopped for a quick lunch when we were out running errands the other day and he had a lot of trouble getting out of his seat belt and out of the car, and when I tried to make light of it, he said he was really worried about himself.  I told him that I am, too, but that I will do all I can to help him and keep him safe.  And when we were out shopping, as well as today walking in the park (for the first time in weeks), he seemed very frail and uncertain.  I took his hand and snugged his arm close to me trying to help him keep up, and also to make sure he had support.

And then, there's the increased difficulty for him to get his medicine down.  I finally asked the primary doctor if there are other formats for his meds.  One of the larger capsules--galantamine, for the Alzheimer's--is available in a patch which has been ordered.  A couple of others are available in liquid form and have been ordered. The other meds he takes are small enough to put in a spoonful of applesauce which seems to work so far.  Bob is also having more and more difficulty with getting dressed and undressed so I'm helping a lot more with that now, too.  One day this week, I stepped out for a minute to get something and when I came back he was trying to put on the jeans he'd taken off ON TOP of his pajama pants.  I've noticed that if I don't remove any other items of clothing as soon as he takes them off (or keep them out of sight until he needs to put them on), he seems to think he has to deal with them somehow.  I even have to keep my clothes out of sight, otherwise he's trying to figure out how to put those on.

Tuesday, January 31
  I want to add a bit to what I wrote the other night about Bob's declension this week.  I can hardly believe how much he has lost in the past 10 days!  Yesterday we picked up Hope at school shortly after its start because she was throwing up.  She spent the day here, mostly sleeping, but sometimes wanting some TLC from me.  At some point in the afternoon Bob appeared agitated and then took off out the front door saying something like, "I'm leaving.  I'm out."  When I asked where he was going, he just shrugged and headed down the driveway.  My mind was racing as I went off in pursuit--is this where we're headed now?  what if I can't get him to come back?  should I call police?  maybe Donna or Steve (our neighbors and friends) could go after him (since Hope was alone in the house)?  When I caught up to him, halfway down the drive toward the road, it dawned on me to try asking him for his help.  It took a little coaxing, but he did come back and I got him to help me make our bed which was still unmade because he had slept from about 9:00 (when  we'd returned with Hope), until about 1:00--very, very unusual for him, too.  This episode was especially frightening to me; it was the first time he ever did anything like it--and I suspect not the last.

And then there's his walking.  The last few times we've been out, I've felt really nervous about whether he was going to fall.  That seemed especially true today.  I had called the VA social worker yesterday to see about ordering a toilet seat riser and/or the hand rails you can put around the toilet (because he's having more and more trouble, especially at night, sitting down and getting up.)  When the social worker called back today, she asked about other things Bob might be needing, too, that we could include in the order.  She mentioned a "roll-a-tor" or walker for when we're out and about.  As luck would have it, there is a physical therapist coming tomorrow (her second visit) so I told the social worker I would ask her what she thinks of the idea.

And while he's still feeding himself, it's getting visibly harder for him to do.  Tonight we had leftover pizza and he kept trying to cut it up with a fork even when I said several times it was okay to use his fingers.  Finally, I cut it up in bite-size pieces and even then, he struggled to eat it.  His bowl of ice cream seemed to puzzle him, too.   I know all of these are signs the Alzheimer's is deepening and he is moving into a later stage.  It's so hard to watch.  He struggles with almost everything now.

Wednesday, February 1

Today began unfolding for us around 3:00 am.  Bob got up to go to the bathroom and I went with him, but when we got there, he absolutely would not sit down on the toilet.  He had a "death grip" on the window sill and once I got him to release that and turn around, with his back to the toilet, he went rigid and wouldn't sit down.  It seemed he was afraid he would fall, so I finally gave up and we went back to bed.  This happened twice more but after the third time, I was getting worried about what would happen once he could no longer "hold it." Around 7:00 am he was again getting up.  I was going to wait and see how he did but then I realized he was having trouble even getting out of bed.  He was sitting on the edge, but leaning over on his left elbow.  He sat and struggled that way for about 5 minutes.  Finally, I got up and went around to help him up.  When we got to the bathroom, same thing as during the night.  This really started my "worry machine."  At that point, I decided I'd get him into the disposable briefs we have as soon as I could.

All this made me really frightened, though.  I couldn't imagine how I would cope if he could no longer use the bathroom.  On top of that, he could not figure out how to drink his coffee at all, and finally gave up, even after I'd switched it into 2 different cups.  Even harder to see was his blank, empty face as he sat across from me.  He was in a different space entirely, and didn't seem aware that I was there.

As I sat there worrying and fearful, I began to think of who I could call, and what might be helpful.  I started by calling the VA, leaving a message wondering whether Bob might have a UTI (I've been reading in an online support group that those can severely change a person's behavior).  Then I called the home health office and asked if they'd found a toilet riser (they were going to check on that for me yesterday) and would they send it out with the physical therapist who was coming today.  They ended up not having one, but purchased one for us to borrow until we receive the one ordered by the VA!!  The therapist even installed it for us.

Then I decided I didn't feel up to facing all this alone today, especially since I knew we were also supposed to take care of David this morning and Esperanza had already had to reschedule her Tuesday clients due to another commitment.  So I called Janice--our friend, a retired nurse, and former caregiver for her mom-- but somehow we missed each other.  Then I called Donna who was just getting up.  When I shared the story, and my fearfulness, she said she didn't have much on her agenda today and would be over.  She arrived at the same time Esperanza and David did!  By that time, Bob and I had had breakfast, but it was really a struggle for him to eat.

Once Donna was here, entertaining David, and sometimes Bob, I was able to get a shower and to make a couple more phone calls I'd been needing to make.  Then I got Bob ready for the day and for his session with the therapist.  Steve came by late morning to check on us and to take orders for anything from the coffee shop where he was headed; he returned later with lattes for all of us.  Donna took David over to their house to see their chickens (he was excited to do that) and kept him busy afterward with a movie, a cookie and snuggling with their dog.

Meanwhile, the therapist came, thinking she was going to share our lunch time so she could decide if there were ways she could help Bob with eating.  Instead, I filled her in on all the things that have been going on since her visit a week ago.  After that, she installed the toilet seat, suggested we put a short bed rail up on Bob's side to assist him in getting up (we already had this, but haven't installed it and she discovered we need a couple of "straps" that weren't included so she is going to try to locate some for us.)  Then she did some exercises with him using a small bicycle-type exerciser she had brought.  She said it's especially important for Alzheimer's patients to get aerobic exercise and she thought this might help Bob do that.  He didn't seem too crazy about it at first, but eventually kind of found his stride and said he liked it after all.  Cydney, the therapist, also strongly encouraged us to consider asking the VA if they would send Bob a stationary recumbent bike to help him keep exercising.  I have already placed a call to the social worker who has been so helpful in ordering things for him.  The p.t. and I talked some about his possibly using a walker when he is out with me but she is inclined to think that might actually be another danger for him if he's not really able to process how to use it correctly.  I wondered if a cane might help, and she is going to come by tomorrow to assess that possibility.

By 1:30, Esperanza was picking up David so Bob and I headed off for a walk in the park because it was a sunny (though cool) afternoon.  While we were there, his sister Barby in Florida returned my call of earlier today.  (Donna had reminded me that Barby has said--more than once--she will come whenever I let her know she's needed.)  The upshot of that is that Barby is arriving in Santa Fe next Wednesday, Feb. 8, flying on an open ticket, planning to stay as long as she can be helpful!  I am so relieved.  This journey, with all its serious decisions to be made, has begun getting lonelier and scarier.  It will help a lot to have another family member here to help me sort through some of these things.  And it will help to have her here so that I can get out to appointments with folks who can give me more information related to those decisions.  AND it will just be nice to have her happy, loving, upbeat self here.  (Her husband used to tease her that if he ended up in hell, he hoped she'd be there, too, because she can find something positive in any situation!) When I told Bob tonight that she was coming, he teared up and then he said, "thank you."  He was glad I had asked her to come, and he let me know that he is also relieved because he has been worrying about me.  I had no idea of that before!

Tonight was the first time I actually helped Bob take his shower.  I have been helping him get ready, and get the water temperature right.  But he has had some problems recently and last night when he was finished and I went in, as usual, to turn off the water, I discovered him holding on with both hands to the newly-installed hose part of the shower.  I decided he probably needs my actual presence throughout the shower now, but wasn't sure how he'd take it--would he feel I was encroaching further on his independence?  To my surprise, when I told him I was planning to help him with the whole shower process, he thanked me--as if maybe he's been a bit fearful himself doing all that.

So our day together has ended.  Bob's already asleep.  Both of us are much lighter tonight, feeling so grateful for the easy, loving support of our neighbors and friends, Donna and Steve; for the practical solutions (for now) to his toileting issues and for the agency's kindness in making that happen today; and for his sister's quick response to our call for her help!  I told the therapist today that it seemed like this Alzheimer's journey had been like a train going uphill, chugging along but not going all that quickly, and then suddenly in the past 2 weeks, the train is careening downhill almost out of control. Tonight, it feels like although it still may be careening, it isn't quite as  unmanageable as it felt this morning.

Into this New Year

     From our Christmas/New Year's Letter this year:

     Here it is, nearly the middle of January, 14 days into 2017.  Christmas tree and decorations, as of today, are stored away until December comes again.  The first couple of weeks of the year have been non-stop busy in our little family.  Still, I want to take time to share a bit of our life these days.

     Since August, our days and weeks have been very full with grand kids—picking them up from school, taking them to appointments or just “hanging out” together until their mom gets off work, and even a number of “sleep-overs” which we all relish.  We love almost every minute of our time with the grands (who are now 7, 5 and 3) and though it wears us out, it's a happy tiredness and a sweet respite from dealing with the effects of Alzheimer's.

     And, of course, as is its nature, Alzheimer's continues to make its presence known in our lives.  Bob has lost many abilities and needs me to keep him occupied.  While he is still able to be “up and about,” as well as “out and about,”  he no longer seems to have the capacity to initiate much.  He enjoys the grand kids a lot, but cannot carry on conversation of any kind, even with me.  He can't enjoy the newspaper, a book, or even a movie because he cannot follow the content or plot line.  He enjoys music, especially orchestra concerts, and we try to incorporate both into our days whenever possible. The aphasia which is part of his particular Alzheimer's makes everything much harder.  It is often very apparent that there is something significant that Bob is trying to say, but what comes out of his mouth is mostly gibberish.  It is almost as if he is “trapped” inside his own body, trying to express what is inside but mostly without success.  This is frustrating, and sometimes depressing, for him and heartbreaking for me.

     Bob fell a few times this past year, with either no injury or minor scrapes.  But that prompted me to get him into physical therapy.  He was blessed with a very skilled and compassionate young therapist who not only helped strengthen his balance, but also taught us both a few ways to compensate for his losses.

     30+ years ago when we said, “in sickness and in health,”  neither of us had ever even heard of Alzheimer's disease much less expected to face its challenges in our own lives.  But we have been blessed with many caring family and friends, as well as with some good resources and a monthly support group.  More, we have been blessed with many years of strengthening a loving bond that sustains both of us today.   We are thankful for all that has been and all that continues to be, and we are confident that we can walk this path supported by our love for each other and the loving support which surrounds us.