Tough to breath

The nursing staff from the care center called both father and I today following up on breathing difficulty that Mom had over the weekend. 

After several episodes of coughing, shortness of breath and general difficulty breathing the on-call physician ordered a chest x-ray this past weekend. Not surprisingly the film showed no visible problems. The nursing staff has continued to work with breathing difficulty through today, Monday, and this evening the physician ordered a "nebulizer treatment" and Mom was able to calm and go to sleep. 

My lay-person opinion and thoughts. 

Mom has been diagnosed with Wegener's Granulormatosis for more then ten years. She has been on Septra for extended periods of time (years at a time) and she ended the Septra treatment about two years ago while the vasculitis was in remission or a calm period. I think it is back and the pre-admission physical Mom had back in May confirmed that some of the symptoms had returned including subcutanious bleeding and upper respitory distress and fruitless coughing. 

Quoting from vasculitis.med.jhu.edu

Wegener's can affect virtually any site in the body, but it has a predisposition for certain organs. The classic organs involved in Wegener's are the upper respiratory tract (sinuses, nose, ears, and trachea [the "windpipe"]), the lungs, and the kidneys. Listed below are the organs commonly involved in Wegener's Granulomatosis and the specific disease manifestation(s) in each organ.

• Ear
• Eye
• Nose
• Sinuses
• Trachea
• Lungs
• Kidney
• Skin
• Joints
• Nerves

The care nurse I spoke with this evening referred to COPD, which is Chronic Obstructive Pulmonary Disease. 

Quoting from lungusa.org

Chronic obstructive pulmonary disease (COPD) is a term referring to two lung diseases, chronic bronchitis and emphysema, that are characterized by obstruction to airflow that interferes with normal breathing.  Both of these conditions frequently co-exist, hence physicians prefer the term COPD. It does not include other obstructive diseases such as asthma.

Me again:

Obviously this is also a possibility but with the history of Wegener's I am no at all certain that COPD is the current condition.

We are a long way from a care plan and there is no diagnosis of the current condition but this is truly a complication for Mom. She is not mentally in a condition to understand care that might include nasal oxygen or other hoses or appliances. I would imagine she would pull and tear at any hose or tube used for breathing assistance. 

I had better stop speculating.  

The reality of thinking of other things

Oh dear. I have not thought of Mom for several days.

I mentioned this once before but it just struck me how quickly I am
sliding into the new reality that she is where she is and Dad is
where he is and I am at home and work and this is the way it is going
to be for awhile.

I am not discontent with this, it is just an interesting feeling to
go, "oh, Mom is probably in the hall way of her care center rolling
along in her chair mumbling confusion to herself, that should be
upsetting me, shouldn't it?"

But it is not as upsetting as it was a week ago or a month ago. This
is the new reality. Our lives are beginning to go on.

Dad is struggling. He pointed out that they have been married 52
years and the missing companion is what he misses. He went to visit
her a few days ago and she recognized him for just a few seconds,
told one of the staff, "hey look, there is my husband", and then it
was gone, about that fast. He knows the reality that there is no
sliding back to "normal" but the mind and heart play tricks with the
head and he found it quite upsetting. He cried and he does not do
that often.

A number of family, cousins and such of my mother's are being very
supportive. Several older relatives are staying in touch with Dad,
with me, by phone and email, Thanks Jerry and Dorothy.

Makes me wonder

I visited Mom again today. How many times have I said that, how many
times have I written it...

Since I was last here much has happened. Two weeks ago Dad and I
moved Mom from Petaluma back to Clearlake to the nursing home she
started her journey in last May. She is back within ten miles of
Dad's home and I again can visit both Mom and Dad in the same trip,
no driving opposite directions to see each of them. The 80 mile
journey back to Clearlake was thankfully uneventful, Mom was quiet,
almost sleepy the entire drive and we needed to make no un-scheduled
stops of any kind. The staff in Clearlake were ready for our arrival
and Mom was in her new bed in no time at all.

Sadly her emotions and responses were essentially flat the entire
day. While at ease and comfortable with Dad and I she also had very
little reaction to either of us on any emotional level. When we
arrived at our destination the staff provided a wheel chair to our
car and it took us many long minutes to get Mom up, standing, turned
around and seated in the chair. She was unable to take direction,
unable to understand the mechanics of turning around and was very
nervous regarding standing and walking. Quite discouraging.

So, I was back for a visit today. I walked in to the center, was
greeted by staff that recognized me and I made my way to Mom's room.
I found her in her wheel chair in the hallway, foamy wedge seatbelt
in place, she was fiddling with a foot rest on her chair. I said, "Hi
Mom", said it several times, she did not particularly respond, I
turned her chair and moved down to her level and said "Hi" again. She
recognized me on some level, took my hand and I walked with her
rolling along down to her room. Each open door we came to she wanted
to turn in since this was "her room", I kept us rolling along until
we arrived at her door.

Her bed is is a "low bed" with a floor pad, no restraints, just a
nurse station motion alert and a floor pad for rolling out of bed. I
guess I would rather not think about the nights right now. I sat on
the bed, faced her tried several simple attempts to reach her, "hi
Mom, how are you...", "hi Mom, are you having a good day?...", "Mom,
is today a good day?". She never responded. She removed her sandals,
I put them back on, she turned her chair around and rolled out of the
room. That was it. She went out to the hall, turned right and slowly
cruised down the hall to the first available room, where she turned
in. I stood at the door of her room, leaning against the door jamb,
watching her go, I considered crying. I walked down the hall, met the
nurses's aide for the hall, the aide said, "where is Marjorie?", I
said she just rolled into her neighbor's room. The aide said, "oh no"
and trotted down the hall. I walked out the front door.

Total time, eight minutes, what a great visit, what a great son.