Saturday, November 28, 2009

Settling In

Its been 2 1/2 weeks now since dad went into the care center. We are all adjusting to the new circumstances, and developing new routines.

The care center gets the residents up fairly early in the morning.  That means that dad is awakened and dressed by about 8:00 AM for breakfast.  They have activities for the residents during the morning.

Mom usually comes to visit for lunch time, which is served at about 12:15 each day.  Dad needs some assistance with his eating.  He need someone to cut up his food for him.  Usually if someone will feed him a bite or two of food, you can hand the fork over to him -- and he will usually feed himself.   Mom usually says with dad until after lunch, then he usually is transferred to his bed for an afternoon nap.  After dad goes down for his nap, mom usually goes back home for a little while.

At dinner time, mom returns back to the care center.  She usually arrives at about 5:30 PM.  She spends some time with him before dinner.  She brings magazines and newspaper sections that dad likes to look at.  Once again she helps dad with eating dinner.  As I mentioned before, he usually will feed himself once he gets started.  However, there are times when he seems to forget how to use silverware.  On those occasions mom feeds him.

Mom usually stays with dad until about 8:00 at night.  By then dad has been transferred back to the bed, and is usually resting comfortably. Then mom returns home for the evening.

This routine has its pluses and minuses.  On the one-hand, mom now has much more freedom that she had before dad was placed in the care center.

On the plus side, mom can go shopping when she needs to.  She can schedule Dr.'s appointments for herself in the mornings.  She can transact business as she needs to.  She also can sleep at night without having to keep one eye and one ear open all night long worrying about dad getting up and hurting himself.

On the minus side, making two trips a day from home to the care center (roughly 10 miles each way) can wear on her too.  Making two trips each day complicates the daily schedule.  Also, it means driving home after dark, now that we are in the winter months.

Mentally, the stress on mom is of a different kind.  Whereas before, the stresses of being a primary caregiver are constant and demanding, there is a different kind of stress with having a loved one in a care center.

This new kind of stress involves a combination of questioning whether or not you have made the right decision to place a loved one in a care center -- as well as working with the care center to make sure that all of the resident's needs are being met.

Mom has been concerned about having to place dad in the care center.  Mentally she knows that it was the right thing to do.  However, it takes time for our emotions to catch up with what we know in our minds.  Mom wishes that that we could have kept dad home longer.  In reality, there is a difference in the care one receives at home, versus the care you get in a care center.  At home, you have complete control of the schedule, you know your loved ones needs intimately, and can address those needs.  Your loved one has 24-hour one-on-one coverage by someone who loves them.

This is not a slam on the care center, or their staff.  So far, our experience has been that most of the staff are very dedicated, caring people.   However, they have many patients to take care of, and they can't physically be in more than one place at once.  Sometimes you might have to wait a little while for the staff to help you with one thing or another, while they take care of other patients.  Also, they have to work on their own schedule to organize their efforts and resources in the most efficient way.

Mom has been in the process of communicating to the care center staff what dad's needs are, and what works best for him.  They have been listening, and have been incorporating mom's concerns into their care routines.  Also, the staff has been learning thing about dad, and how they can best handle him, and have come up with some ideas of their own as well.

As for emotions catching up with logic (or the heart catching up with the head), mom is getting there as well.  This past week she has received some spiritual assurances that taking care of dad at home would truly be more than she can do -- there are essential things that the care center can do for dad, that we can't do at home.  Dad is truly getting the best care possible at this stage of his Alzheimer's Disease by being in the care center, rather than at home.  This spiritual confirmation has given mom a greater measure of peace in her mind and heart -- that the right decision was reached when dad was placed in the care center.

Dad has his good days, interspersed with the occasional bad day. Some days he is more cooperative, and some days he is more combative.  All in all I think he is doing well, for the most part, and is adapting to his new circumstances.

Friday, November 27, 2009

Joel's Bio

At the care center, they have little display cases outside the doorway to each room.  There is space available there to tell about the resident -- their life, interests and achievements, and to display little knick-knacks from their life.

My daughter Amy is decorating a little poster board with some applique's and I wrote a short bio for dad to include in the display.  (When it's done, I'll post a photo here.)

In the meantime, I thought it might be nice to publish the bio I wrote about dad here as well:
Joel Carpenter was born in May of 1935 in Evanston, Wyoming. He grew up as the youngest of 12 children.

He Served a Mission for the LDS Church to the Hawaiian Islands (Lucky Guy!) from 1955-1957. He learned the Hawaiian Language – in fact you may hear him still say a few phrases in Hawaiian even now! He continued to serve in the church throughout his life.

Joel Married Myra Hatch, from Randolph, Utah in October of 1957. They are the parents of 4 children and of 7 grandchildren.

Joel the served in the US Air Force from 1958-1962. He was stationed in Mississippi, Florida, Johnston Island (in the Pacific), and California.

Later Joel received training as an electronics technician, and worked at Tooele Army Depot for about 25 years. He would often have to travel for extensive periods of time with his work, which took him to Alaska, Washington, Oregon, Colorado, New Mexico, and to his beloved Wyoming.

Joel Retired from Civil Service in 1995. After his retirement, he and his wife, Myra, were able to make a cross-country trip in their motor home, which was always a life-long dream. Joel always liked tinkering with his motor home, and would always stay up on the latest in RV equipment and improvements.

Joel’s interests were many and varied. He enjoyed photography, and loved to develop and print his own pictures – he even built a darkroom in his basement! He enjoyed tinkering with and repairing electronics, and loved to listen to his shortwave radio. He took great interest in trains, especially locomotives. His dad was a fireman on locomotives, and his great-grandfather worked for the railroad, and was present when the Golden Spike was driven. Joel enjoyed traveling, and had an extensive collection of maps and guidebooks. He has visited all 50 of the United States. Joel loved classic movies, and over the years he collected hundreds of movies on video tape. He was quite a handy-man around the house. He did all of his own framing, drywalling , painting, plumbing and electrical work as he finished his basement.

Joel enjoyed oil painting. In fact, one of his paintings is hung here, on the wall of his room. Stop in and see it sometime!

Joel was always a kind and thoughtful person. He taught his children well, and is loved and respected by his family.
There was much more I could have included, but I had to keep it down to one page.  I hope dad would be pleased.

Wednesday, November 11, 2009

Garden Terrace

The van from Garden Terrace came at about 6:00 PM last night.  Mom and Mark had been busy getting things ready for dad to move into the nursing home facility.  Marking clothing, labeling personal effects and equipment.  Collecting medical information to communicate to the nursing home.

Earlier in the day, dad's doctor faxed in the order, and medical history required for dad's admission into the care center.

We had one last supper together at home.  Mom made her chicken gumbo soup sloppy joes.  It has been some months since dad has been able to sit at the kitchen table to eat.  He got so that he could not get up out of the kitchen chair.  So instead, mom and Mark set up a card table in the living room (complete with table cloth) and scooted the card table right up next to the recliner chair that dad would use in the living room. Then they would set up some folding chairs around the card table, and have dinner together in the living room.

We all gathered together last night.  Mom, Mark, Jeannette and myself (Dave).  Our brother Doug I'm sure would have been there too if he could have been, but Virginia is a little too far a commute.) We like to think that he was there in spirit.

We had one last prayer and blessing on the food together at home before dad was to be transported.  Dad quite enjoyed his meal. He even told mom that it tasted good!

At six o'clock, the doorbell rang.  The driver from Garden Terrace had arrived.  He brought a wheelchair into the living room.  We put dad's coat and shoes on.  We positioned the walker in front of his lift chair (recliner) and then got dad moved to the wheelchair.

Mark and I were prepared to help the driver get down down the stairs from the house.  However the driver was very expert in his wheelchair handling skills, and had dad down off the porch and into the van in no time on his own.

Mom and I rode with dad in the van to the care center.  Dad got along pretty good.  It was dark, and he watched the lights go by as we drove.  He didn't appear anxious or unnerved.  Mom told me that dad had not been out of the house since last June for a doctors appointment.  He has not been able to get up and down stairs since then.

When we arrived at the care center,  they took us right to his room.  Dad has a roommate now (Fred).  We had one of the CNA's, a stout young Hispanic fellow, help dad get out of the wheelchair, and onto the bed.  We put a blanket over dad, and he appeared to rest comfortably.

Mom and Mark went with the intake nurse, to collect medical information about dad.  Meanwhile, Jeannette and I stayed with dad in his room.  Fred, the roommate made an appearance.  Fred could walk and get around just fine on his own.   He just came into the room, lied down on his bed, and promptly went to sleep.  Fred didn't move again for the rest of the evening.

Eventually one of the CNA's came into the room and helped us get dad undressed and ready for nighttime.  They put an alarm on dad, in case he tries to get out of bed.  It will alert the nurses to come and check on him.  One of the great fears we have had (both at home, and in the care center) is that he will try to get out of bed, fall, and hurt himself (such as a broken hip).  The care center's approach to this is to lower the bed as close to the floor as possible, place cushions on the floor in case he tries to get out of bed, and have the alarm attached to dad.  Hopefully that will prevent injury. 

Mom and Mark sat with dad until about 10:00 PM.  Dad was drifting off to sleep.  I hope he was able to sleep well. 

Tuesday, November 10, 2009

Last Day at Home

Dad's condition continues to decline.  For the last few days it has taken 3 people to handle him at home. Two people to help Dad stand up from the bed or a chair, and one to change his clothes, brief, etc.

Mark and I have been coming home from work 1-2 times during the day to help mom get dad moved from place to place within the house.  I have been going over each evening at 9:00 to help mom and Mark get dad into into bed for the night.

It has become physically impossible for one person at home to be able to handle him, and get him moved safely from place to place.

For the last week or so, we have been touring and interviewing nursing home facilities in the Salt Lake Valley.  We decided on Garden Terrace, for the time being.  Garden Terrace is a skilled nursing facility that specializes in Alzheimer's care.  They organize their patients (or residents) in various groups according to how far advanced the Alzheimer's disease has progressed. Being an Alzheimer's specialty facility was somehting that brought some comfort to mom.

The only downside to Garden Terrace is that they are private-pay only (meaning they don't take Medicaid patients.)  For now, that's OK.  Dad doesn't qualify for medicaid right now anyway.  However, once his resources have been depleted, we will have to move him to a medicaid facility.  We are still investigating medicaid skilled nursing facilities for a potential move in the future, should it become necessary.

Over the last day or two, after we initiated the process of having Dad admitted to the nursing home, I couldn't help realizing that a lot of things may be happening for the last time:

Dad's last night at home, in his own bedroom.  Dad's last meal together with the family (sloppy joes and steamed vegetbables.)

In reality, dad may never return home again.  The home he has lived in for the last 45 years.  He doesn't really have a comprehension of what is about to take place.  With his hearing loss, and his cognitive loss from the Alzheimer's,  it is very hard to communicate and to get through to dad.

In our hearts, we don't really want to make this choice. We wish that we could continue to care for him at home, where he gets personalized attention.   Mom and Mark have been worn down physically, emotionally, and mentally to nearly the breaking point.  Mom has hurt her back trying to stoop, bend and lift too much.   However, it has become impossible to take care of  dad at home any longer. 

Tomorrow will be a day of great change for all of us.  But especially for dad and mom.  Tomorrow will begin a new era in their lives.

Wednesday, November 4, 2009

TIA Weekend

We believe that dad may have suffered a TIA Stroke last weekend.  We noticed a slight droop in the muscles of his face on his right side.  His ability to stand and balance himself was greatly diminished.  We believe that he has suffered TIA strokes in the past.  Each episode affects his memory, and his ability to perform normal daily tasks.

For example, normally first thing in the morning, mom has him sit up on the edge of the bed (feet on the floor) to get him ready for the day.  She hands him his electric shaver.  He knows how to turn it on, and then he proceeds to shave.  The only thing is that he doesn't really know when to quit shaving.  Unless someone intercedes, he would just keep on shaving indefinitely.

On Sunday morning, mom let dad shave himself.  When he had completed shaving, mom had him give her the electric shaver.  She next handed him his toothbrush, with a little bit of toothpaste on it.  Instead of brushing his teeth, as he normally does, he instead started brushing his face with the toothbrush.  Toothpaste got smeared all over his face.  I believe that he thought he was still shaving, and was trying to use the toothbrush as a razor.

Dad's balance, coordination, and overall strength was diminished as well as a result of the TIA.  It took three people to get him up from the bed.  Two were needed to hold him up while his clothes and brief were changed. 

He also has forgotten what to do in the bathroom.  It is tricky sometimes to get him to transition from his walker to the toilet.  We have hand rails in the bathroom so that he can let go of the walker, and then position himself on the toilet.  Mark recently added a riser to the toilet seat, so that it was not so far down for him to sit down, and to stand up after doing his business.

The only problem is, that somedays he will refuse to sit down on the toilet.  It is like he has forgotten why he is there, and what he is supposed to do. Even if you can get him to sit down on the toilet, he doesn't know what he is supposed to do once he is there.  Dad's hearing loss, along with the Alzheimer's Disease are playing a role here.   Dad has to wear briefs (Depends)  now, and is incontinent most of the time.

Dad's strength and balance have improved somewhat from last weekend, but each time he has a TIA stroke, he usually does not fully regain all of the functionality that he had previously.

We are beginning to look into care centers in case we need to go that route.  Really it looks like it's only a matter of time before that will happen.

Saturday, October 31, 2009

The Long Goodbye

My father, Joel, has Dementia.  We believe he has Alzheimer's Disease (AD).  Dad's doctor tells us that the disease has progressed to what is clinically called stage 6e

Dad's world has shrunken to three rooms of the house.  His bedroom, the bathroom, and the living room.  Special accommodations have been made for him in all three of these rooms too keep him safe and comfortable.

My mother is the primary caregiver for dad.  Like dad, her world has shrunken as well. Her service is with all her heart and strength.  The stress and strain on her tremendous.  What a Saint she is.

My brother lives in my parents' home, and is of invaluable assistance to both mom and dad.  She could not care for him at home, without Mark's support.  My sister also provides support and help to mom and dad.

As for me I am the eldest son.  I have a wife and family of my own to care for.  But as needs the needs and demands of this situation have increased,  I too, am getting more involved in this family effort, to help support my parents and siblings in this family effort.

It has been said of  Alzheimbers Disease, that it is the Long Goodbye.  No one really knows what the Alzheimers Patient thinks or feels, as the disease progresses.  Unfortunately, they are unable to communicate their thoughts and feelings in the later states of this illness.

It is the fate of the families and caregivers of this disease to see the person they once knew and loved slowly slip away, and melt into oblivion. 

As we strive to love and care for our father we see him slipping further and further away from us.  We don't now how much time we have with him.  We are determined to care for him the best we can, however, we must balance his care with the demands that this care places upon our mother.  We must protect her health and resources too.

This blog will be about our family's efforts to look after the needs of my father and my mother, as we say goodbye to my father.  I have chosen a blue template for this blog -- because that was dad's favorite color.

I hope that what is written and expressed here will benefit other families who may find themselves in a similar circumstance either now or in the future.

Fare-thee-well, my father.