caregiving

It is Quite a Task

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It is a task to watch her struggle to walk. She will not ask for assistance or help. One has to brave the storm and help anyway. To me as her principal helper, it is frustrating.

We went to the physical therapist and the occupational therapist today. I suppose I was hoping for some magical solution to Cheryl’s interest and attitude towards exercise. I suppose I was hoping for a story end like the tale of Lazarus. (“Rise up and walk!”)

He suggested to her that she practice by taking big steps and for exercise stomp down on the floor to emphasize a marching motion. He suggested that she practice getting out of and into a chair– nose over toes. Bend forward to stand up. Bend forward and stick your butt out to sit. When you are up – grab your walker. Practice this often and muscle memory will kick in. When we were home she complained of pain in her back. Her core is weak.

He politely suggested that I should coach her to put her feet in the right place and lean forward to stand up. Her has no idea how much friction that coaching causes. (You are always telling me what to do!) I do tell her to lean forward and stand up. I usually put my hand on her back to help her and steady her as she rises. She leans on me pretty hard. She might say stop pushing but if I remove my hand I find that she was leaning hard backward on me and she can easily stumble back and lose her balance. I ignore her complaint mostly and apologize later when I am sure she is stable.

I learned an important nuance today from Justin the physical therapy guy. He had never met Cheryl before so part of the visit was him looking through her records and asking various questions about this and that. He asked about falls. Everyone new asks about falls. I replied that Cheryl falls a couple times a week. She usually falls backwards and it seems to me that it is getting worse. She tends to lean backwards when getting up from a chair. If she passes by a stable solid piece of furniture that she has grabbed for extra support she hold onto that as long as possible even to the point of leaning backwards to maintain contact. Justin told me that is pretty typical for folks with balance issues. (Huh. I was under the misguided illusion that parkies tend to hunch forward. Cheryl never hunches forward.)

I know that there is no magical solution. But I can hope.

Just like I can hope her voice will get stronger with speech therapy.

Just like I can hope for the occupational therapist to be useful to her.

The palliative care clinic is focused on improving her sleep. Part of that is controlling her constipation. If she sleeps well she does better during the day. She can remember who I am for example. She will remember to eat. Perhaps she will quit losing weight.

There is no cure for this debilitating and degenerative disease.

Carpe Diem.

Palliative Care

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Today we saw the doctor whose clinic is concerned with palliative care. After a long discussion about drugs, symptoms and what the palliative care clinic does the conversation turned to what we hoped to achieve from it. My hope is for better existence for Cheryl. She has trouble vocalizing her hope.

From the National Institute on Aging — (NIOA) — the next couple paragraphs are useful general information. The doctor’s question hit me spiritually, what are we expecting? It is a good one — What are we expecting? A cure? Return of mental acuity? A better attitude about living with one’s plight? More mobility? A stronger core muscle strength? — A flood of thoughts entered my mind.

What is palliative care?

Palliative care is specialized medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.

Who can benefit from palliative care?

Palliative care is a resource for anyone living with a serious illness, such as heart failure, chronic obstructive pulmonary disease, cancer, dementia, Parkinson’s disease, and many others. Palliative care can be helpful at any stage of illness and is best provided soon after a person is diagnosed.

In addition to improving quality of life and helping with symptoms, palliative care can help patients understand their choices for medical treatment. The organized services available through palliative care may be helpful to any older person having a lot of general discomfort and disability very late in life.

Who makes up the palliative care team?

A palliative care team is made up of multiple different professionals that work with the patient, family, and the patient’s other doctors to provide medical, social, emotional, and practical support. The team is comprised of palliative care specialist doctors and nurses, and includes others such as social workers, nutritionists, and chaplains. A person’s team may vary based on their needs and level of care. To begin palliative care, a person’s health care provider may refer him or her to a palliative care specialist. If he or she doesn’t suggest it, the person can ask a health care provider for a referral.

Why (a conversation with myself, often) is palliative care necessary and useful? What benefit will come from this method of viewing Cheryl’s worsening Parkinson and her associated dementia issues? These are my thoughts.

Since the beginning of this road all I have wanted is for Cheryl to be safe, comfortable, mobile, and as independent as she is capable. Seven years ago, just before we purchased this condo that we live in now we lived in a neat old five bedroom, two story house with a basement. It was a hundred plus year old house with much space and character. Cheryl’s main complaint was her knees. At first I moved her office area downstairs to the front bedroom. We called it the guest bedroom and sometimes “your Mom’s bedroom.” I rearranged the use of the other extra bedrooms upstairs. I remodeled one and took over Cheryl’s old office upstairs as my own. The upstairs bathroom was accessed through the office. The home office was moved to the guest bedroom downstairs as was the rest of her equipment – sewing machine, computer things, printer, etc. but Cheryl had adopted the upstairs bathroom as her own and regardless of where she was maintaining a presence during the day she went upstairs if she required the facilities. (The hallway to our big bedroom in our condo she now refers to as upstairs or downstairs as her Parkinson and memory issues worsen.) She complained about her knees everyday until we moved to our flat single floor living arrangement.

During the seven year process of moving, adapting, adjusting I put her needs first not thinking about or recognizing what those adjustments would do to my emotional and physical health. Not once did I think about how my life would change when Cheryl gave up driving voluntarily when she could not remember where she was or where she was going. Nor did I realize that she was starting into her creeping memory issues. A couple months later when she became terribly upset and anxious one evening because she could not find $1.89 mistake in the check register that she was still computing by paper and pencil, I did not realize that she was struggling with cognitive issues in addition to memory issues. Her math and logical sequencing was gone or mostly so. She did not admit it to herself or to me and I did not recognize it. (notice – cognition in recognize) It was perhaps two years later that she was unable to follow recipe instructions or sewing pattern instructions. (I found myself reading how to reverse an item so that the seam allowance was hidden.) In retrospect she was probably terrified that she could no longer do those things. She was in fear of losing her mind and it caused anxiety.

My hope or expectation is that she will achieve some level of relief from her anxiety. My hope is that she will sleep more comfortably. My hope is that she will accept her disabilities that inhibit what she wants to do and she will ask for and accept help freely offered by her spouse (me).

My hope is that I will be more comfortable with letting her do for herself as much as she can while she can do it. Whatever it may be. My hope is that I will find the strength and the financial means to provide for her future care. My hope is that I will plan activities and be cognizant of the fact that plans will change without warning and I will not rage out loud when it does not go my way.

My hope is to be able to let go once in awhile for my own mental well being. I hope that this group of clinicians can help with living and life. But mostly I hope to get a good night’s sleep most nights.

Carpe Diem.

Why

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Why do I feel like Cheryl has to try out restaurant restrooms like a small child who has been recently potty trained? Is it my imagination or the real feeling that she is has. She seems to ignore her bladder and her bowels until we get to somewhere that she may get trapped. She has no ability to think or plan ahead for toilet contingencies. And then at other times it is all she can think about.

Why?

Yesterday, the discussion was about some lesson plans and software development for the early computer program that she pioneered in the grade school our kids attended when they were small. We had come to a nearby park for a walk after dinner. She spoke of this as though it was on going. She had to get that organized.

On the way home from dinner in one of her favorite restaurants, there was a near disaster with urinary incontinence and no protection for it. This part of our life saddens me. She will not ask for help. She knows that she needs help but is either unable or unwilling or simply embarrassed to ask for it. When I offer unsolicited help she will become angry and anxious. I understand this completely and at the same time I do not understand it. An urgency in her head is organizing old birthday, Christmas and other greeting cards in her office. Taking a break from that for a bathroom break has no priority. Her “full” signal does not work correctly. By the time her body signals full to her brain, she is stuck because she forgot how difficult it is to get out of the chair. The bouncy motion she uses is not helpful. She will not ask for help.

Why

Tonight when we got to the restaurant she was looking around to see where a couple of our kids were. She thought that they were coming even though there was no mention of them coming or any communication of that sort. An idea jumped into her head from left field. In the afternoon lots and lots of left field thoughts appear. Why is this part of the plan?

Why?

Why in the afternoon? Or is it merely that I notice in the afternoon and it grates on me more after having dealt with her worsening dementia all day? Sometimes her memory is so short it is not unusual for her to forget the previous sentence. Where are we going? – can create great frustration in a caregiver (me) when repeated at two minute intervals throughout the day.

This essay started with me sitting in one of our favorite restaurants wondering if she would be able to get back through the ladies room door. As I now read what I wrote that day and think about where we are with this disease — we is an important part of those thoughts — my meditation drifts off into why do I think I know better? For that matter why do folks generally think that they have the solution to this dilemma or that conundrum and freely volunteer the solution? There is no answer to that last comment. I can, however, parse and control and limit my own contribution to living our best life with Parkinson.

Tomorrow we see a new doctor. Her calling and interest is palliative care with a chronic degenerative neurological disease. Cheryl’s movement disorder specialist suggested that she might be able to help. He also wrote scripts for PT, OT and speech therapy. She has been therapied by these people before. She lied to the PT folks last time when they asked if she tried the exercises that they gave her to do. I do not think her moderately cognitive impaired brain thought of it as lying. She thought about doing the exercises, that was enough.

For my part, I bought a caregiver call button from Amazon. My thought was that Cheryl could press her button if she really felt that I could help her – get up, find clothing, get socks, and a myriad of other small helps with which she is struggling (her mind says no she is not) but does not want to accept that she needs help with (see I did it again.) Her speech is so soft she cannot say loudly, “I need help” or I am not listening. With this doorbell she could press it when she needs help rather than me hovering around the bathroom door asking, “Are you doing okay?” She does have to keep the button with her. That is the next great solution to find.

Admittedly it seemed like such an attractive solution. Ugh!

Carpe Diem

Like Drifting Sand – some days

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Friday – Happy Friday. We have gotten to the end of the week, almost anyway without any major disasters. This was therapy week. Cheryl’s doctor suggested that she might benefit from PT, OT and ST. Those are speech therapy, occupational therapy and physical therapy in reverse order from my listing of initial abbreviations.

These were the initial visits for evaluation of where she is currently. She did this last year. This disease of Parkinson knows no schedule or any sort of time table but my overall observation of Cheryl is that she is deteriorating at an incredibly slow rate. She is nevertheless deteriorating. I put her in a transfer chair in the morning to take her to the toilet and then later to the kitchen table for breakfast. Eventually she is able to maneuver herself around without my help.

No one dies from Parkinson’s disease, they die with it. Some days however their care partners seriously consider cliff jumping without the necessary safety apparatus. (Sarcasm)

The mundane rigor of it all juxtaposed to the chaos is draining. Perhaps we all need to talk more.

The occupational therapy appointment was at 3:45 PM. The facility is handy. It is about a 10 minute drive from our house to the Drake Center. Cassidy asked Cheryl lots of simple questions about where she is physically and what she did with her day. Questions about cooking, cleaning, sitting and standing. Cassidy also preformed some simple strength and agility testing. Cheryl only misspoke once or twice about her role in the household chores.

My grand plan for the day had been to visit the OT expert and then move on to the Board of Elections. More about the Board of Elections later, but the scheduled appointment to the occupational therapist was almost foiled by a trip to the restroom. At 3 PM I suggested that Cheryl visit the toilet – just in case – so that we had time to make it to the OT appointment at 3:45 PM. Only 5 minutes away but there is that “Please arrive 15 minutes before your appointed time” that medical health services always ask you to do for them. (What makes them so special?) Nevertheless I try to abide by their scheduling rules. Parkinson raised its ugly head and said, “bathroom! Now!” After a little bit of argument we managed to get to the appointment at 3:45 PM. Sadly, there was no 15 minute breather.

In Ohio there is a statewide ballot issue concerning the way we modify the Ohio Constitution. The leg-ups and self-righteous in control of the state government are annoyed with the fact that the OMG’s and the gracious are so easily able to call them to task by proposing a constitutional amendment and forcing them to defend their positions in public. Never mind the fact that graft and greed in the form of direct payment for votes has caused the leader (Householder) to be visited upon by the Feds with gaol (old English) in the offing. The amendment process has survived the rise of the special four who attempted to write themselves into the constitution as the only ones to cultivate cannabis in Ohio if it became legal for recreational use. (I wonder if bars will have special places for them with the tobacco smokers?) So, in the end, the process probably does not need to change.

Early voting at the BOE was not in the offing, however, The OT appointment went longer than I had expected. I do not know what I was expecting. The early voting office closed at 5 PM which was about 4 minutes before we got there. So, after a series of snafus we finished at one of our local pizza stores which was located across the parking lot from the Board offices.

Pizza is a go-to for Cheryl when she cannot decide on anything else. We have often come to this particular pizza palace after church on Saturday evening. We succeeded in landing a table at the empty restaurant at 5:16 in the afternoon just as the skies opened up with a late afternoon thunderstorm. It is Ohio and late July. We enjoyed our pizza and drinks and sat to watch the storm wash our car in the lot. When it came time to leave, Cheryl announced as she often does that she had to visit the rest room. All sorts of things zip into my head when she makes this announcement. Mostly there is a flashback to the many less-than-satisfactory trips to public bathrooms. She refuses to recognize that she needs help more than merely occasionally in the ladies room. I have been in many over the past few months and yet I think she is unconvinced that any help is required. (So I sit and wait to see if she can get back through the door with her walker and seethe while I do it.) Public bathrooms and their cleanliness and the equipment or lack there of is often the main topic of the drive home conversation. (Not the quality or the enjoyment of the food.) It is no doubt just me and my internal opinion but often it seems she is acting like a newly toilet trained child who needs to try out all the toilets they come across because they have this new found ability.

We left the pizza store and drove to one of our favorite soft serve ice cream places for dessert. She wanted to use the toilet there also but theirs was marked closed for repair. I wonder how they get away with that with the health department rules we have.

When we returned home, she spent many hours sitting in her office touching and reading her cards. We eventually went to bed at midnight. She seemed to know where she was then although she had spent the better part of an hour in our from guest bathroom. (Lots of bathrooms are in this story.)

She awakened today at 9:30 am. Spontaneously! I attribute that to a new medication her neurologist prescribed along with the OT, PT and ST. He felt that some if not all of her sleep problems were due to smoldering anxiety and depression issues.

After breakfast and after getting cleaned up and dressed we had a funny little discussion.

“When did I get involved in this play? Who was that girl that put me in it?”, she asked after we had discussed the weather and Jill’s Christmas in July party tomorrow. I thought she was kidding about her situational awareness of her disease. I was wrong. She believes she is in a play that may never end.

All the world’s a stage,
And all the men and women merely Players;
They have their exits and their entrances,
And one man in his time plays many parts…

As You Like It — William Shakespeare

Carpe Diem.

Occupational Therapy

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Today we go to OT. Next week we see the speech therapist for the second time as is true for the physical therapist.

On Tuesday of this wek the speech therapist gave me as caregiver a homework assignment. I am to keep track of what Cheryl eats and whether she has a coughing fit while eating whatever it is.

Yesterday I wrote: She had scrambled eggs and bacon with toast and orange juice for breakfast. I aways put water on the table near her just in case. She did not cough (or hack) while eating any of this. Earlier when I gave her the morning meds she coughed a bit while sipping water through the container with a straw. This often happens but less so when I get her to sip a little water before she takes her meds.

She coughed not at all again until our late afternoon grill out on the patio. Again when she was sipping a little water.

I have to admit that I have paid little attention to how Cheryl eats. She eats more slowly than I do. I am a wolfer. She is not. She drinks very little liquid while eating.

Thinking back, her mother drank very little at supper time when we had her over. Her mother had a swallowing problem as she aged, often her throat worked bacwards for her. (She would become embarrassed and refuse any kind of help. I would take her home.) I wonder if Cheryl worries about this problem her mother had. I wonder if Cheryl worries that she might develope the same problem.

On this morning we had Pillsbury refrigerator rolls. These are a favorite of hers so I try to make sure we have some hanging around in the refigerator. She always has orange juice but this morning I also gave her some applesauce. She has been requesting this more when she takes her pills. After eating the applesauce and two and most of a third roll she complained of “nausea”. I do not know what she is actually feeling. She has not vomited since I went to visit my sister two years ago in California. (Then she was extremely constipated.)

She coughed for a bit and I gave her a chewable Tums smoothie with which she sipped a little water. All was well afterwards.

It is remarkable how little water she uses to take her meds. I encourage her to drink more water. It is remarkable how repetative it all is. It being daily life.

Carpe Diem.

Today – Is it Christmas?

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Yesterday evening when we went to bed she told me that today she wanted to put up the Christmas tree. My response was sure tomorrow is a good day for that. She slept undisturbed overnight.

Earlier after a breakfast of pancakes and fruit she told me that today she wants to put up the Christmas tree. We have a niece who has a party theme of “Christmas in July” around her newly rehabilitated back yard pool. (Jill lives five doors north of Sherlock Holmes. For those who read Sir Arthur you can deduce her address.) I have been keeping Cheryl apprised of the decorating progress as Jill has posted pictures on her Facebook Party page.

We went to Jill’s party last year. Of course we will go again this year. I will not remind Cheryl about her idea to put up the Christmas tree. I want to see if she remembers it for a longer period. (Overnight does not count. She often remembers her dreams from overnight.) And to be honest about it I do not want to put it up. Only I will be doing it and I have to rearrange furniture to do it.

So today I will live in terror of having to put up the Christmas tree. Or I could embrace it. The jury is still out.

Carpe Diem.

I Suppose it is True

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One cannot be certain where the day is going when the person you care about most is dealing with Parkinson, memory loss and rapidly developing dementia. I have not spent much time away from Cheryl in my mind lately but Edie’s words made me think.

NEVER REGRET A DAY IN YOUR LIFE: GOOD DAYS GIVE HAPPINESS, BAD DAYS GIVE EXPERIENCE, WORST DAYS GIVE LESSONS, AND BEST DAYS GIVE MEMORIES.

— from Edie Kynard (a friend on Facebook)

The past few days are oddly jumbled up in my head. Yesterday we continued to track down Cheryl’s cousins-that-she-has-not-seen-for-awhile and had lunch. We picked up Lois and in keeping with our plan went to eat in a restaurant we had not been to before. Wild Mike’s it was called. Sort of a cross between a diner and a sports bar. In Cincinnati how you tell that is the place sells boneless chicken wings, real chicken wings, hoagies and hamburgers. It was a good time and we stopped in with Lois for an hour or so and Cheryl went through her family reunion book with Lois.

This afternoon two of Cheryl’s friends came to visit for awhile. I went to the barber for a much needed tune-up. I enjoyed the camaraderie of the barber shop that I have been going to for 50 years or so.

In the evening I made dinner in the oven as rain was predicted and I did not want to grill out in the wet. We ate on the back patio waiting for the rain that never did come. Cheryl pronounced it good and ate most of it. We did not argue. We enjoyed a random conversation about plants and rocks and things in the woodsy area behind our condo. She told me about some kids in the trees that I could not see. I asked her what they were doing. Just hanging there she said.

And today, although it was not best, is a good memory. Tomorrow she said as I helped her to bed – I want to put up the Christmas tree.

Carpe Diem

Cheryl likes Cookies

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Today is Snicker Doodle Day again. These are simple sugar cookies. I added a new twist and put in a teaspoon of almond extract into the cookies dough. (Maybe two tsp. next time) I also added a tablespoon of psyllium husk power for added fiber. Parkies need as much fiber as they can get.

This basic recipe comes from the Betty Crocker Dinner for Two Cookbook. Cheryl has been making these cookies for 50+ years. Her face lights up when I make them.

Carpe Diem.

It is a Messy Disease

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Cheryl never likes it when I suggest she should take a shower. She accepts that information as me telling her that she stinks. She does not but I keep track of how often she washes herself in the shower. She can no longer remember that information. So, when I ask if she needs any help taking a shower and getting cleaned up and she snaps at me, I ignore it as I am able to do.

It hurts occasionally and I react to that sometimes but I feel in my heart she does not recognize the hurtful comments she makes sometimes.

Another “goal” is to keep her safe and not walk away no matter the vindictive.

Carpe Diem.

What are My Goals?

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My sister said that maybe I should reevaluate my goals for Cheryl. I interpreted that as not specifically goals but what am willing and wanting to do for her care. Considering myself and my health in that same equation.

Hmm, lots to think about there. Recently I bought a new transfer chair to help me maneuver Cheryl around various places that I felt were too far for her to walk. My original thought was graduation and parties. We had some of those coming up.

It was a convenient method of transport so much so that I opted to take it to Florida on our little trip and not Cheryl’s super-walker from U-Step. In retrospect it was both a mistake and a smart move. I did take her “in house” walking frame. She had support at night and in our rental condo. A beach wheelchair was free for the asking we merely had to make a phone call to the life guards.

I pushed her across the street to get ice cream a couple times. that would have been a car trip if I had not had the transfer chair. — Convenient. Getting her into and out of the ladies handicap bathroom/stall — INConvenient. Live and learn mom used to say. We will keep using the transfer chair. It is how I get her out of bed to the toilet to the kitchen. It works great for that. I have not had any back issues. She does partially support herself.

I have started to think — actually I have for some time — I need to get my act together before I start helping her get her act together. In that instance I am not in a hurry for me and I can be calmer (I am still not good at that part.) at least while I am helping her. I have learned to anticipate her moves.

When we were at the neurologist earlier this week he asked if we would like to talk with a doctor associated with their practice that specializes in palliative care. We will see how this all plays out. Are we near the junction with another road?

Carpe Diem