Cost of extra care

How do you know?

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How do you know when it is time for an extra care facility? Maybe it is time when she brushes her teeth with Noxema and is not repulsed by the taste?

Maybe it is time when a magazine arrives in the mail and she immediately takes it apart to sort and re-sort the pages into a file.

Maybe it is time if she suddenly at 12 AM becomes interested in calling her long dead grandmother to find out where she lived when she was a little girl and is inconsolable until she can find the phone number.

Maybe it is time if you recognize in yourself that much of your patience with God’s plan is no longer available.

Maybe it is time when she is no longer eating enough to sustain life and you begin to think that perhaps others may be more knowledgeable than you at finding a solution to nutrition.

Maybe it is time if you simply want to help her more than you are capable of doing.

Maybe it is all or none of these ideas. Maybe there are other thoughts that have crept into your mind as you realize how deep your love is and how shallow your skill set is.

Living apart will probably be as hard as living together for the first time when we joined ourselves in matrimony fifty-three years ago.

It makes me sad and anxious.

Carpe Diem

Mundane

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It is hard to describe, for me anyway, how uninterested I am in doing the boring everyday tasks to keep our household running. Typically I write about our life and Cheryl’s symptomatic display of different nuances. A day or so ago I was a little down in the morning and I started these notes while I was lining up in my mind what I needed to accomplish for the day. I did not want to do any of it but it was either I do it or it does not happen.

This morning while I was thinking about it some more and helping Cheryl to get dressed, I got a Messenger-message from Cheryl Hughes asking how was I doing? (I sort of poured my heart out to her a week or so back when I was worried about some new behaviors Cheryl was presenting. Today she checked up on me.

I responded, — Not too bad. Cheryl slept mostly overnight. She got up once and told a long story about a play she was in as a child called “My Fair Lady’. I know the play. I had not heard the story about her and a couple of her siblings being in it. I helped her to the toilet and we wobbled back to bed. Sometimes she has funny and vibrant dreams that makes her talk and occasionally she wakes. And sometimes I become part of her dream(ing). I am looking forward to the day that her room is ready at the memory care section of Bridgeway Pointe near me. Between my generous sister and myself I think we have the financial resources figured out. My Roman Catholic church upbringing hovers around in the background and tells me I should feel guilty about that. It has taken me a long time and a lot of blog words to convince myself that it is best for both of us. It will happen in the next couple of weeks. (It’s saddening that the previous occupant is now in heaven.) This week we saw the nurse-practitioner who works with her MDS neurologist. Cheryl’s weight is down to 110#. She has lost 24# since the NP weighed her in March. She sleeps more. Today I crushed her morning meds into applesauce because she told me she does not like the pudding that I have been using. I have been crushing her pills for a couple of weeks now. Today I am fine and you are helping me to gather my thoughts about the mundane day to day tasks associated with living. Why do those seem overwhelming on some days and on other days not?

It seems as though time just drags. And all of these activities: laundry, cleaning, cooking, filing, checking, shopping for supplies and other little day to day things are just there to give me another thing to do while caring for Cheryl.

These are mundane but necessary. These are not my whole existence. It sucks to believe that this is the reason I am here. Let me whine a little. I write this for me.

Filing

I have never been a good filer. Librarians are good at this and finding things back. I am not. Frankly it is a scary task that I ignore for too long and then it is overwhelming. Categories – that has to be decided first and it has to be more specific than “stuff” or “stuff to-be-saved”. Later on more anxiety creeps in as one must decide “how long to keep the stuff?” Why is there no manual?

It is just history anyway. Only the IRS can ding you into giving up your records of stuff.

Many folks have a hobby of scrap booking. I have several note books of scraps of my journaling along through life. Does that count? I have not given them the pitch nor have I organized them in any fashion. They merely sit upon my desk in full view of the monitor.

In a previous life our purchasing department had a wonderful clerk who filed all invoices by date of purchase order and then alphabetically by vendor. Once a quarter she would empty the drawers and scan them electronically into files saved in the same order in a database. It made my life easier as an engineer. I could easily find the PO # and from that I could find the vendor and warranty information. A much better system than my “root through the drawer” technique I have now. Life needs a database.

Checking

I have written about this before and I consider this to be a great accomplishment. Early on I decided that it was unnecessary to maintain Cheryl’s shoe-box method. My files are all electronic. The absolute first thing I did was to find a piece of software to maintain my checkbook separate from the bank’s system so that I could check them and my spending.

Categories rose its ugly head early as I had to decide what I wanted to call various expenses and income streams. (Just in case the IRS decided to ding me.) I got through it. Why am I unable to do the same with a drawer full of paper. Maybe because the system I learned from Mom was put everything into an envelope called “Paid Bills” date it and put it in the drawer? There might also be coupons from J C Penny in there too.

Cooking

I actually like to cook. Generally I like my cooking. I also like to experiment with things. Sometimes the disasters are not edible. When I am cooking for Cheryl and me I do not experiment. She eats less and less these days. I have no desire to have her feel bad about not eating what I have prepared. It is harder and harder to figure out what she might eat at any one time. Breakfast was usually safe. That is no longer true.

Laundry

I do laundry almost every day. It is usually a mixed load of towels, underwear, shirts and pants. Cheryl is a pack rat when It comes to old used Kleenex tissues. She blows her nose and then puts it away in her pocket. I have become pretty adept at discovering where and in which pocket she is hiding the Kleenex. She only has two pair of pajama bottoms that have pockets. I am onto those odd pants and check them first before they hit the basket.

Today a new crisis has arisen. Who would think that a corn muffin would retain its shape through the entire hour and seventeen minutes of the washing machine cycle. I am pretty sure it is no longer edible and some of it did fall apart so now it is all over the inside of the washer. Sticky. It was folded up into the dish towel I used as a place mat the other day. (UPDATE – if you let the washer air out for a couple hours the sticky loses its tactile strength and the muffin parts can be sucked up with a dust buster or other suitable small vacuum.)

Every day is a learning experience.

I outsource the cleaning duties to my niece.

I actually like shopping for supplies either online or in the store. If I have to take Cheryl with me I cannot spend as much time shopping but it is still an enjoyable experience. And she gets out and feels like she is helping. I am disappointed that Boxed Up has gone out of business. Amazon is a big help as is Kroger’s.

Carpe Diem.

At Peace

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One evening this week our three children came over to discuss what is best for their mom. It is a hard discussion. Cheryl was part of it. As we came to understand and accept the few decisions about Cheryl’s future care, I sensed a peace, a calmness descend upon my soul. Cheryl needs more help than I can give her consistently. I do not function well with little sleep.

That meeting took place a couple days ago. It may be my imagination but I sense that Cheryl is slipping away. She slept unwell overnight which in and of itself is not unusual but today she is sleeping the day away.

Carpe the next Diem. This one appears to be lost.

Maybe my night is lost also.

Writing that last line has put me in mind of controlling the things I can and letting go of trying to control the things that I cannot.

Carpe tomorrow.

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.

Inspiration, Thoughts and Ideas

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As we progress down the sad road of Parkinson and intermingled dementia I am always looking for ways to help Cheryl or get help for her and me. This web blog by Cheryl Hughes is and has been a source and an inspiration to me.

For the past few days as Cheryl has struggled through various mental clouds I have begun to ask about and look for trusted home health services. She is coming off of a UTI which I am getting pretty good at recognizing just by behavior. Some sort of mild sleep disturbing cough (thankfully not Covid related) has messed with sleep cycles for her and me. All of that is easing as the antibiotics have been used up. We are slowly drifting into our weekly sameness.

The past week of April has been beautiful in Ohio. On Tuesday I road my Rad City bike out of our drive onto the public roads. This is something that I have spent the winter gathering the courage to do. I rode around late morning to early afternoon on residential streets near me so that I did not have to deal with rush hour frantic antics. I greatly enjoyed my ride and although it was not long I realized that I was relaxed when I returned. My cousin-in-law was sitting in the kitchen with Cheryl having lunch and I was pleasantly fatigued.

It is time for me to get some consistent considerate help. It will cost money but there is that story about camels and needles that reminds me of my real responsibilities. Financially rich is not a good description of us but I am acutely aware that Cheryl’s care will cost more as time goes on. I may be too concerned about that but it is something I think about often.

Cheryl Hughes has pointed me to DailyCaring.com which is now sending me email newsletters. This website may prove invaluable as I try to learn more about helping Cheryl. Other friends have pointed me to a home care group that I will contact in the coming week to get established.

Carpe Diem

Great Unknowns

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For the past couple days Cheryl’s watch has been missing. It is THE WATCH. As a routine each night we place the watch on what I call the little hat. It is actually a little ring holder that was given to her by Anna. She put her rings and her watch on it but a little more that a year ago I purchased for her a gold chain to wear her rings as a necklace. She had lost enough weight in her hands that her rings would fall off in the car or a chair or the restaurant. This last was the scariest.

But I have digressed. –THE WATCH – has been missing since at least Wednesday. Kathy came to visit on Wednesday. I first noticed that her watch was missing in action when I made dinner and Cheryl and I sat down to eat it. She is right handed so she wears her watch on her left wrist. I noticed it was not on her wrist but I did not say anything because sometimes she does not wear it. Later when we went to bed I noticed that it was not on the little hat. For a couple days I would surreptitiously search for THE WATCH.

About noon today as she was preparing to take a shower and I was searching, I found her watch. She often puts rubber bands on collections of random items in her office. Her watch was on a book shelf in her office near some items that had been banded together. My heart leaped for joy. (I have not been following my own rule of looking around her office to see where things might be.)

Lately, however, I have become anxious about Cheryl’s mental health. The watch story is not about that, it seems to me to be slowly worsening as time goes on. And I think that I am getting used to it. (That idea makes me anxious and adds a fear of not recognizing changes immediately.) My daily notes about bedtimes, falls and other behavior are no longer daily. I note falls and other anomalies. Bedtimes are between 9:30 and 10:30 typically. Her impostor delusion (a noted behavior) seems to appear if she is up later than 11 PM and disappears into her office to “work on stuff.” Last night was one of those nights. I drove her around a four mile loop in the rain as she anxiously gripped her purse waiting to get home.

She was okay with me helping to change her clothes and get into bed when we got back. She wished me farewell and safe driving home. I left the bed room and open and closed a few doors as though I was leaving. I took off my jeans and sweatshirt that I had put on over my pajamas to make the drive. I turned off the lights and gently eased into our bedroom as her husband coming to bed. It worked. I worry that one time it will not work. So far my fear is unfounded but I still worry because I do not have another plan except for sleeping in the living area on the pull out sofa-bed.

At one time in the past I asked her if she remembered any of that. I learned that a reminder in the morning of odd behavior is unwarranted and perhaps even stupid. Introspection of failed ideas is useful.

I still wonder (and worry) about her failing memory and confusion and general mental heath. And of course how to pay for it all should she need extra care that I am unable to give her. Maybe I need some counseling? Or something to ease my mind? Engineers spend too much time what-iffing the situation.

On the morning news the U.S. Congress spent much of the taxpayer’s dollars annoying the CEO of TikTok. That social media platform gets more time per average viewer that Facebook and Twitter. Alas when will we discover the unimportance of Facebook and other social media? … except as another form of 1960’s TV.

Carpe Diem.