Wednesday, October 21, 2020

Dignity, Safety, Choices and Family Care

 Woo boy! It's cold out there! It's ice-scraping weather. It's so cold I have to warm the clasp on Millie's leash in my hand before I can open it.  

INSIDE, however, is toasty warm.  Michael began our first fire of the season last night and between the two of us tending to the sleep patterns in the home, we were able to keep the fire going as well. I do love a blaze in the morning.... In previous winters I sat in the rocking chair by the stove and enjoyed my cuppa tea and Scriptures. I had to move the rocker due to walker, wheel chair and oxygen concentrator...but the fire is still cheery. 

There is not a lot of fun and interesting things to blog about tonight...but I have been contemplating a few things, perhaps I'll just indulge myself and share my musings. 

Yesterday, Tuesday, Dad had an intake with home health physical therapy. It became apparent if I'd toughen up, he IS able to do more than I was requiring. LOL  The therapist ignored the faces and groans  I give in to.....and so today we used the walker more than the wheelchair. He didn't walk far, and always with one of us right there...he does tend to tire all of a sudden and would fall without us there to get between him and the floor...but it was huge progress. I am thankful for the PT's who will be in our home twice weekly. 

Today, Wednesday, a new OT came to the house. She had a different attitude than the others have had, this pulled out a different tone in my response.  I'm praying to walk in more love on Friday. She accused me of discounting Dad's pain and dignity...and quite frankly, this is just not true. 

She changed several things - which didn't make sense to me.  (Deleted another paragraph) I asked if she had access to others notes in Dad's records. She said she did.  If she had READ Dad's file before she came to see us, she should have seen  his history of falls, his underlying diagnosis of dementia, the fact I had called two of their nurses on Monday to discuss the pain Dad was expressing and what I'd been told to do about it, the fact a nurse and PT had both been out and inspected the care we are giving Dad and feel it is the best place for him to be.  She told me to change elements of Dad's care (use of gait belt, exercises, MEDS). 

She called 10 minutes after leaving. It seems she had NOT read Dad's file before the visit and I should keep doing what I was doing and Dad should not do any lifting over his head. (I have deleted another couple of paragraphs, we were aware of the limitations due to surgery).  I am hopeful the "tone" and "attitude" (of both of us) is different when she returns on Friday. We aren't sure dad needs OT - he simply needs to build strength to be independent. We considered telling the company we were waiving OT. In the end Dad felt it may be the only job she can get and we should give her another chance. ::snort::  Since I am already fighting the perception of being a trouble maker by removing Dad from the nursing facility early....I'll play nicely. 

I am noting trends as we walk through this season. For some "dignity" seems to be the priority in care for the elderly.  I agree. And yet,  dignity is defined by how THEY as a 30 - 50 yo would feel about the situation.  This is flawed as a 50 yo would not react the same as a 79 yo. Another key fact is NOT ALL ELDERS WILL FEEL THE SAME. Past experiences and expectations will come into play.  It seems to be the accepted norm in America, that it is more "dignified" to have strangers care for you than family. People take out policies to pay for long term nursing facility care. I get that and it is probably a wise move - but I think we've forgotten how generations before us cared for the elderly in America. As a child, I knew a few families who had grandparents living with them. Dignity matters.  Safety needs to be considered as well ....and I think safety is sacrificed for the sake of dignity, i.e. no restraints, daughters not taking care of fathers etc. 

Our choices are not the only choices and are certainly not a benchmark for choices other families make. However, we are NOT discounting Dad's desires or dignity. He wants to be home. He wants to be cared for by family rather than strangers. We chat with him about shared memories, we play games, we read the paper together, we follow politics together (oy vey - MERCY), we hug him, we help him. He needs 24/7 supervision. We arrange our sleep and waking schedules to provide it. He is able to do more and more for himself, but he needs someone in line of sight when he does these things. We are happy to provide this.  He needs to learn what is safe in his current condition. It IS caring and respecting of his dignity to help him learn those limitations...rather than let him suffer repeated falls. 

Independence. Honestly, I think for 30 - 50 yo this is a BIG DEAL. We do NOT want to rely on others - for anything.  Dad has been independent. He is happy to have family he can depend on in this season. 

I understand many in America would rather have strangers care for them than family....we are blessed  Dad has been exposed to many cultures, as have we. In every other country we have lived in the norm is to accept the elderly into your home unless it is absolutely not feasible to do so. Honoring your elders includes caring for them at the end of life.  To put them in the care of another, when you CAN provide the care, would be considered shameful and undignified. 

Yes, we bless dad. BUT Dad BLESSES US. We are being formed into the image of Christ as we interact as a family. 

Yes, having Dad here disrupts family rhythm. Yes, we've lost some space. Yes, it's work...but by enfolding Dad into our family, we've all grown. I'm a little less self-centered (and I dare say I'm not the only one). We've had the incredible blessing of our grandchildren knowing their GREAT grandfather. We learn patience and endurance as we watch dad deal with ever-changing health issues. We learn, sometimes, stubbornness is just plain needed. We learn forgiveness and restoration. We learn a bit more about what it means to, "Honor your Father and Mother."  Mary wanted to stay home - honoring meant moving to her town and caring for her. Dad was willing to move into our home. The heart to love and honor remains the same - the choices may look different. We learn to work closely with each other, to watch out for each other, and to care for each other.  As an example, Stacia had youth group tonight. Michael and I had a meeting.  Nolan and Alex are happy to forego sleep (work comes at 0430) on Wed nights to watch movies with GG.  We don't stay and visit, but get home so the guys can get to bed. We are learning new levels of cooperation and care for one another, as we care for Dad. 

Dad loves us, and we are able to give back that love. This season is a gift. I wish all his health care professionals could see the gift, rather than a set of protocols they've decided are "right" for all elderly. Dad is happy, loved, respected, valued, honored, and cared for - here in the midst of family. He is an integral part of our family unit. He brings value to our lives. We bring value to his. 

One "lesson" I've learned in the past week is how Mike's PD disability rating is a blessing in this season.  We could never provide the care Dad needs without both of us home. I've heard "it takes a village," and it does...but we should never discount the importance of the family unit in that village...or even the family unit as a village. 

OK - I DID delete many paragraphs...but this is where I am on this Wednesday night. 


Jen said...

I have encountered that perceived dignity before. People accusing others of being “abilists” and not considering the dignity of others. When really, they are assuming that the person feels like they do, when in reality, the person is grateful for being helped to live a fuller life. The new generation is so busy trying to make life “better” or “equal” but have a hard time separating their feelings from others. Just because YOU would be mortified in a situation doesn’t mean everyone is mortified by it.

Good on you for communicating with your dad and caring for him in the best way for him and your family as a whole. I love your multi generational home!

Unknown said...

You can request a different OT person if she is not a good fit for your family. I had to when mom had knee surgery. I learned a lot from watching OT that helped in caring for mom. Learning positions and helps for everyday living were a huge benefit. My mind set changed as I realized that those everyday self care jobs were so beneficial to her as a type of physical therapy even though I could do them faster and easier. Being a caregiver and advocate is hard and I am praying for you all.

Stephanie said...

I think that you are a "homeschool" care provider. Meaning that the mind set and belief system in caring for and raising children extends into caring for and helping our aging parents. It also seems God's charge on the issue is the same. As a society we have changes to a selfish, not-my-problem mind set. Don't get me wrong, like with schooling, being at home isn't necessarily the best choice in some situations, and I am thankful there are facilities to help, however, in home, no one else loves and cares for the elder the way the family does. I agree that dignity is subjective and we can't but a young persons standard on that. You are doing a great job, and know that you are in my prayers!

DeEtta @ Courageous Joy said...

Thanks all for sharing your perspectives. Yes, things got better on the second visit with the OT - she'd read Dad's chart and realized I DO care for my father and he is not being neglected or "discounted." I've learned with Dad it is much more beneficial to observe his actions than to go solely on a "number scale."