the other side of the road

I have decided  rather than close this space since my role of caregiver has ended, I will instead post on other aspects of being a caregiver to elderly parents. I am looking at it from having traveled and reached the other side and maybe, just maybe, I can provide encouragement to those who are still walking that unique road.

It's certainly not a resignation nor is it a termination due to poor work performance...it must follow that  the time and the work has ran its course and has expired.

Among other things I am in the process of dropping the role of caregiver from my status. Funny, it is not as if I have been doing this job all my life, but the past seventeen months of full-time caregiving for my parents has defined me in ways that absolutely nothing else ever could. It has been the "best of times and the worst of times"....but it has marvelously enriched my life like nothing else could. Unless you have had the privilege of having such a call as being a caregiver to an aging parent, it will not make a true connection with you. You may try and may even think you can put yourself in that place and understand all that it involves...but it will fall short of how consuming that role is in your life.  It embodies heart, soul, mind and strength. For some it might have been a gradual change, for others is was instantaneous.

                                                                               November 2010


I had a little of both. Mother's brain-altering disease was gradual... years of climbing hard places alongside her and my primary caregiver father. Then when Daddy got sick and needed constant care,  it became as a speeding train with decisions having to be made quickly.

                                                                              February 2011      


Would I have changed anything, the manner in which I acted or the processes I mentally and emotionally walked through? Yes, most certainly. I am for the most part still processing many things as I get back to my life before the caregiving role became a huge part of my daily life as well as my family's life. What was then considered normal.

I am not sure I like the normal in that sense.

waiting

"I go to prepare a place for you..." John 14:2

She has had no food today. The little sip of water attempted choked her. But even without the pain meds there is no pain that we can sense, though there is a horrible sounding cough which acts up from time to time due to the congestion in her lungs. It causes us to wince. But other than that she rests quietly for the most part.

My sister and her husband came this afternoon from out of town. My husband, Charlotte, and I went out for lunch then on to a few random errands. I believe with all my heart my mother knew my sister was here even though there was no words to let us know that was true.

 I am wearing a path from her room.

We wait.

a baby spoon

The past two days have displayed a mood of dreariness outside my windows. It is cooler and the sun has taken a vacation behind the clouds.

 It fits perfectly with the mood in the rooms on the inside.


 Mother has not been well. A spell which we believe might be the beginnings of pneumonia. She is not eating. The only amount of nourishment is a tad of applesauce. She  will open her mouth just a little bit which allows me to slip a baby spoon with applesauce containing her medications. In the evening she clamps her lips shut and will not take anything. I know I have backup suppositories, but then I must roll her over and in the evenings she is not feeling her best. I despise her pain.


She will open her eyes when you call her. She speaks little. Today I smiled at her and told her I loved her  and I knew she understood.

peering into my day

Quiet here does not mean that it is, even though mother has had some sleepy days lately and that certainly makes it quieter from her end. My favorite quote that gives so much understanding to these cheesecloth days is, "The only thing that is predictable about a day is that it is unpredictable." Sorry. I do not know to whom credit  is due for that statement, but I have some kind of consolatory thought it could be someone taking care of a sick loved one.

She eats less and less. A larger woman in her day, I find rolling her is no longer a physically difficult thing for me to do. Always trying to "read" her, because part of caring for a person with dementia is knowing what they are trying to tell you; sign language with no one ever having written the how-to manual. And her vocabulary is diminishing so the fewer words she speaks mean more. And there are those times she comes up with her own words, "thinasisha wataban."

If we did not laugh at some things if would be unbearable. So is that why sometimes I just feel a need to go into a corner and have a good ol' belly laugh?  And is there anything wrong with that?

Christmas 2004

However, pulling out photos from the past bring such joy.

purposeful silence

The silence here has been purposeful. I didn't know when to stop all the busy activity or how to type the words that convey what my heart is feeling. It was so much easier to just move on, get the next thing done, whatever it might be, keep moving and do not stop.

Knitting helps. It can put me in a different world for a moment, but even that has taken a backstage assignment these last few days.

 Suffering is a fact of life and the tenacity of the flesh to cling to life is unbelievable. But watching the daily suffering of someone you love is emotionally draining. The never knowing what the next day will bring is the only thing that is predictable. Then the hardest of all, the decision not to use the strongest pain medications, in spite of what some might say will provide relief for her. I have increased mother's pain meds, actually her "pills" and other meds are always changing. There is a wonderful apothecary that delivers to my door so there isn't even a need to run out and get the medicine that we are hoping will provide the comfort needed. Singing to her sometimes helps, along with numerous standing-by- the-bedside head rubs. We also pray, quite a bit. Some of my aids have become sweet prayer warriors right alongside me in the care of my mother.

And right now as I as am sitting here in my sun room typing this post I hear, "Mama, come here!"

Better go.

the fine details

She remembers.

But she is not sure what she remembers. I walk into her room and she will ask me when am I moving or on other days I can tell by her confusion she is trying to ask me something. When I explain to her that she will be coming home to live with me next Monday, we spend the entire visit talking bout it.

"Okay, I am ready to go."

I continue reminding her," Monday, not today, but Monday".

"Tomorrow?"

coming home

"Honor her for all that her hands have done..." Proverbs 31:31

google image

I am like one that has reached the shore after a long swim across rough waters. The shore is uncertain too at times, but finally the time has come to do what has been in my heart to do for a long time.

I am bringing Mother home to my house to care for her.

To honor her...

a tender spot foiled

 I have decided to record here some of the stabbing issues that loving a person with dementia produces.

 The days of excitement we are accustomed to seeing when we visit my mother have come to an end.  She use to light up like a Christmas tree when we would visit, her eyes smiling with warmth, the delight in seeing me her daughter and her grandchildren could not be contained, it was genuine and flowed from her very essence.

Some things ending might be good, but this is not one of them.

 I have been ignoring this one, not willing to admit it because I keep thinking it will pass and perhaps there will be a return to the way it has always been. There is a definite passing, but just like the disease which has taken so much of her from us these past years, the realization of this particular kind of passing is very difficult to witness. This one wants to cling tightly like super glue. I feel myself wrenching it away. It doesn't help when we tell ourselves, "It's okay...she is not herself...it is understandable, a product of the disease". It is yet another level of her decline, and it deeply hurts in an area that has been assigned to her alone, for her special kind of love, in a place that only she can fill. A place that she has always filled in the past.

But here is the true heart wrench ...when an aide or nurse walks in, I see that look in her eyes for them. They have become her pride and joy.

After a meeting with the staff at the nursing facility where my mother resides, we all came to the agreement that it was time to call Hospice. The signs are there and the extra help provided would be the best thing for her and for us.

As I walked out into the blaring sun's rays I slipped on a pair of turquoise blue sunglasses.  Unheeded tears could fall. I am not ashamed of the tears or even surprised by their intensity, but I wanted to hide behind something.

Father's Day

It certainly was not planned. No where was it projected that I would drive on this day the last car my father drove before he got sick.

While he was still alive we sold the nicer car, but his everyday around town car has been parked at Witt and Claire's, until this weekend. It is time to sell this car too and we are thinking about purchasing it for Alan. Alan's car is older and a gas guzzler, a smaller gas friendly vehicle for him would be a good thing, especially when he begins to pay his own bills! We will not get into that matter here, he still has one more semester of school before that becomes a reality.

I got behind the wheel, turned the key in the ignition, put the car into reverse and backed out of my driveway. The children and I headed over to visit with my mother and the emotions that washed over me came unexpectedly as if I had caught the back draft of a hot and heavy wind. I viewed the tiny compass he had placed in the car, I had Alan open the glove compartment to see if I could possibly see something of him and grab a bit of his essence once again.

After all it was Father's Day, and it had not been necessary to purchase him a card or present...I missed him.

Grieving

There are no set rules for grieving. But I am equally convinced, just like snowflakes and dying, everyone has their own unique participation in grieving.

Yet there are similarities too: Empty rooms, possessions to dispose of, aching.

I find myself wishing I would have had at least one more day with him.

silence

I listened this morning. No one coming in the back door. Christina, my morning daily help, wasn't coming back because her service was no longer needed.

Just as we became accustomed to our new routine with caring for Daddy in my home, now we must acclimate ourselves to what seems like empty pockets without him.

No more morning phone calls from Hospice setting their day's schedule. No food trays to carry upstairs. No visits from aides.  We could even go off this afternoon without anyone being in the house.

Changes once again.