What It Was Like To Finally Say Goodbye

clouds

Superman Has Finally Returned to Krypton

Last Saturday, I visited dad, as I have every weekend since he moved here in 2015. When I arrived, he was sitting in his wheelchair with his head slumped over as if he was fast asleep. I have found him like this before but usually, I am able to awaken him. I tried everything – I took him outside where it was cool weather, assuming he would wake up and complain…I placed his dog, Coco on his lap….nothing. No response at all.

As I left him at lunchtime, I learned from the staff that he had been this way all morning and that they couldn’t get him to eat breakfast. I assumed he would wake up and eat lunch, so I left. I called later and learned that he also didn’t eat lunch, so they put him in bed. From that point on, he never left the bed. He essentially went to sleep and never awoke again.

He went 4 days without food or water before he passed. He was sleeping comfortably, so no morphine was administered until the very last day, when his breathing started to look a bit labored. So at 4 pm they started him on morphine. By 9:30 pm, he had passed away.

My brother visited him at around noon and reported no response at that time. He tried playing Frank Sinatra in his ear…nothing. When I arrived at 6 pm, I saw his breathing had become a little “weird” meaning he was breathing short breaths strictly from his belly. That was when I was told that they had started morphine. At that point, I decided to have “the talk.”

The Talk

I leaned over to him and said “Ya know, you’ve lived a long and happy life. It’s time for you to go. It’s okay. We’ll all be okay. No need for you to suffer any longer. You have my permission to go.” And then 3 1/2 hours later, he passed away. I had heard of others who had tried this approach, so I figured I had nothing to lose. It has been torturous to watch his decline, knowing that I could do nothing to stop this train wreck.  I was happy that he didn’t seem to suffer in the end. He literally appeared as if he just went to sleep and never awoke again.

I was happy that I was the last person to be with him. He and I were a team. I don’t even know what I will do without him in my life. Even though we haven’t been able to communicate in the traditional way for about 1 1/2 years, I knew he knew who I was and appreciated everything I had done for him. I was his cheerleader just as he had been mine my entire life. It was time for him to go.

How Did I feel?

Relieved. Happy. Satisfied. Sad. Elated. Depressed. Anxious.

A mixture of emotions. The truth is, I mourned for my dad with every visit. Every step down in his capabilities, I mourned. I cried countless times after I left him. So many tears over so many years. When the time finally came for him to really pass on, my first emotion was “THANK GOD, HE IS NOW FREE.” It’s ok to have mixed emotions. This has been the hardest thing I have ever undertaken. The most time consuming, the most emotional and the most labor intensive. It really was a full-time job. But I did it. And although I probably complained throughout the entire time, I wouldn’t have changed places with anyone. To have witnessed the full circle of life not only prepares me for what is to come but also was such an honor to have been able to give back to my father, who gave so much to me. R.I.P Dad. Mom has been waiting a long time for you to arrive.

Advertisements

Reflections on John McCain’s Funeral

Senator John McCain lies in state at US Capitol, Washington, USA - 31 Aug 2018 How Lucky Senator McCain Was

I listened to Meghan McCain’s eulogy for her father on my drive over to visit dad today and cried the entire way. What an incredible eulogy! It got me thinking how lucky John McCain was both in how he chose to live his life after enduring such tragedy in the Vietnam War, but also how he chose to and was able to live his last days. He could have come home from his POW experience and had it eat him up inside with anger and revenge, but instead, he channeled it towards helping to make the world a better place for all of us. Now, I don’t agree with everything McCain stood for but I definitely came to appreciate his forthrightness and his ability to acknowledge when he was wrong. I, like the Senator, stand up when I see something wrong and do not worry about what others think. I am, like McCain, a direct communicator. I am proud of that as much as I am frustrated by it when others do not communicate with me as directly as I would like them to.

Senator McCain was so lucky because he got advance notice that his days were ending so he could choose how he wanted to live out his last days. My mother was not so lucky, succumbing to a heart attack in her sleep at the young age of 57. The Senator was able to spend time with all who meant something to him so that he could communicate his love for them as well as how he wished to be remembered. He could communicate his wish for how he envisioned his funeral. He could communicate a strong call to arms for the nation to stand up to fascism and tribalism that is enveloping his beloved nation. In short, he could communicate.

Communication

To be able to communicate is so integral to our identity and self-worth. What happens when you can no longer communicate, as my dad has? Since his fall in May of 2015, his ability to express himself has deteriorated to the point where now he not only cannot express himself at all, but I do not believe he understands what I say either. How must that feel to him? He is alive, his body is still working, but he is trapped inside his own skin, unable to ask for help, unable thank anyone, unable to say he loves me or anyone. I believe he still knows who I am as when I arrive, as sometimes I still see that twinkle in his eye and when I leave, sometimes I get a kiss goodbye, But in between, I get nothing. I think about the McCain family and how they got to say goodbye to John, and how John got to say goodbye to them. It was a full circle moment and as sad as I am sure it was, I have to think the family was at peace. Being able to communicate is so central. To have that stolen from you is no different than solitary confinement, only you are relegated to confinement inside your own body. Senator McCain – how lucky you were. R.I.P

 

Teach Your Children Well

father_and_kid

Throughout our lives, we learn from our parents and I hope that I am always teaching my children, despite them not really being children anymore. Although my father is no longer really able to express his needs or really communicate anything clearly to me anymore, I am still learning from him.

Grace and Gratitude.

My father continues to show everyone he meets that he has a sense of humor about the world and that he accepts what is because he cannot change it. As a result, he doesn’t fight having people help him. He accepts all help with grace and gratitude.

How to Grow Old.

He is old. There is no denying that. At the ripe old age of 91, he has outlived his entire family. He is the last living relic of his generation. Yet, he is okay with that. Even grateful. Whenever I say goodbye after a visit and I say “I’ll see ya later,” he always responds with “I hope so.” He doesn’t take anything for granted. I know he hates bingo and some of the activities they offer in his facility but he participates anyway because, why not?

How to Live The Last Chapter of Your Life With Dignity.

He never complains. He generally is happy. And he appreciates all the help he is given. He loves getting attention, but doesn’t demand it and is grateful when he gets it. He continues to smile and treat people with respect, just as he has always done.

Never Stop Trying.

Despite his body being riddled with Parkinson’s and despite the difficulty he has in getting out of a chair, he continues to be willing to get up and take a walk (assisted) daily. I can tell it isn’t enjoyable for him, but he continues to do it because he knows that once he stops, he will lose the ability to walk. So he keeps at it.

Keep Singing.

In a memory care unit, music is playing much of the time because the brain never loses the ability to retain a song. He will often start singing along with a tune that he hears. It’s wonderful because it is often one of the few times I hear a coherent sentence come out of his mouth.

Here is my hope.

I hope that the example I am giving my own children will resonate with them. I hope they will understand the importance of taking care of family, no matter what happens, no matter the inconvenience. I hope they will understand that it is a privilate that I am able to do this for my father. Sharing these last few years with him, although a huge disruption to my life, will be something I will cherish the rest of my days.

 

 

Who Do I save?

I Cannot Save Him

Caregiving is a marathon, not a sprint. I learned this first-hand, because for the first two years after I moved my father here, I visited him literally every day. I mean EVERY day. For TWO years. I was convinced that if I didn’t visit him and show my presence at the facility where he was living, that he wouldn’t receive the kind of care I felt he deserved. After all, we all know that the squeaky wheel gets the attention. When I started my business, however, I could no longer keep up that schedule and, frankly, it had worn me down. I had no life. I couldn’t go away, Go on vacation without worrying about him. Weekends were never about me or my family, it was always about making sure I got my visit in. It was only when I was forced to curtail my time, that it dawned on me. There was nothing I could do, no matter how many hours I put in.

I wasn’t going to save him.

He has a degenerative disease called Progressive Supra Nuclear Palsy (PSP) and because it is degenerative, every time I see him, I see a little less of him. This disease, when combined with Parkinson’s Dementia (which he also has) has robbed him of his language skills and physically walking has become very challenging. I haven’t had a coherent conversation with him in about 18 months. He is walking less, sitting in his wheelchair more, sleeping more during the day. This is the progression of his disease. It will march on, no matter how many days I visit him.

I am not going to save him.

He still lights up when he sees me. He still knows I am someone who loves him. Sometimes I am his wife, other times I am still his daughter. But I am certain he appreciates my visits. And I am now sure that he appreciates them even more, now that I am visiting less. It’s better for both of us because now when I come, even though we still struggle to communicate, at least I have something to tell him. Even if I am no longer certain that he understands me.

Now I visit him roughly 3 days a week. It seems like the right number. I’m not able to walk him every day like I had been or make sure that he is getting outside when the weather was nice or make sure he is being stimulated with activities. No. I cannot do that anymore. I have to trust that the facility is filling in those gaps. And I am still a very large presence there, even when I’m not there. They hear from me by phone, email and text when I need to tell them something. I am much better off and I know he would want it that way if he could communicate that to me.

I cannot save him. But I think I am saving myself.

The Maze of Medicare

mazeAhh…The Maze of Medicare

Sometimes it amazes me (no pun intended) how I stumble on this information.  I shouldn’t have to stumble. This information should be readily available and it’s not. I hope that, through this blog, you will pause and ask questions when you encounter a situation so you can learn about your loved one’s Medicare benefits in a more expedient manner than I have.

My dad was on Medicare Part A last fall after he came back from rehab after his hip surgery. He was getting physical therapy and nursing services for wound care. When he went into the hospital this last time, I learned about a specialized Physical Therapy practice that had particular expertise in Parkinson’s so I made a note to myself that when he came home, I would sign him up for their services.  What I learned was that because they came into the facility, they fell under “Home Healthcare Services” according to Medicare, which falls under Part B.

You cannot access Part B services at the same time as Part A services.

So I had him discharged from Part A because I really wanted to try out Dynamic Home Therapy, the specialized therapy provider.  I was not disappointed.  They provided superb therapy, both physical and occupational therapy services and went even further to suggest that he look into a different wheelchair. I was exceedingly pleased I had made that decision. Once he was discharged from Dynamic Home Therapy, I figured I would eventually move him back onto Part A for skilled nursing services as he always seems to have a skin tear that requires nursing services.

Last week, I finally got the paperwork together and today, the nurse stopped by to tell me that she would be starting next week and would be providing him with wound care.

And this is the KEY THING SHE SAID: She casually mentioned that when she opens a new “incident report” it comes automatically with 20 sessions of Physical Therapy!

There is no dollar limit like there is with Part B but there is a 20 session limit PER INCIDENT. She can re-certify him every time there is a new incident and, in my dad’s case, simply having Parkinson’s would qualify him to stay on because there is no longer a need to show improvement. And, he pretty much always has some sort of skin tear so nursing would always be able to re-certify him for that. This means he will have ongoing physical therapy. There is an in-house therapy team right where he lives which is convenient. It’s not the specialized therapy that Dynamic Home Therapy provided me, but I look at it as a way for him to continue to get structured one-on-one exercise 3 times a week, compliments of Medicare Part A.

Your welcome for the information.

6 Tips for Living to 90 With Grace & Humor

90_year_old_designs_invitations

Dad will turn 90 tomorrow. As I reflect on a life well-lived, I can honestly say that the way to live to the ripe old age of 90 boils down to these personality attributes. This is what my dad has taught me and more importantly has reinforced for me in the last year when I have been his caregiver.

  1. Don’t worry until you need to worry
  2. Most things pass, so obsessing on something will only cause unnecessary angst.
  3. Be content with where you are in life and look for the positive things about your current situation.
  4. Be grateful
  5. Always find things to laugh about
  6. Even though you are frustrated with your declining abilities, there is always a way to find humor even in frustration.

A prime example of #6.  My dad’s declining language abilities often will mean that he creates made-up words in lieu of the word he is trying to find. What comes out of his mouth can be truly funny. One way to look at that is to be sad and frustrated with his circumstance. What I have found with my dad is that if I can keep my demeanor positive, he reflects that back to me. So one day I suggested we create a Paul Light “dictionary” for all his made-up words.  He loved that idea and laughed at the thought. So every time comes up with a new word, I remind him that it will be going into  the “dictionary.” He laughs every time. (#6 on the list)

Where he is living, at Daylesford Crossing,  is generally a very positive environment.  The staff has picked up on this positivity and reflects it back to him regularly.  As a result, despite his declining abilities, he remains happy and positive (#3 on the list).

Although his cognitive state continues to decline and he has good days and bad days, occasionally he reaches out to me and instigates a hug, or says “I love you” or thanks me. It is on those rare occasions that I know everything I am doing for him has been worthwhile (#4 on the list).

And finally, my dad’s mantra throughout his life has always been “This, too, shall pass” which has meant that he really isn’t a worrier and he doesn’t get caught up in something unpleasant that is happening in the moment because he knows it is temporary. I think this has meant a much less stressful life overall. (#1 and #2 on the list).

Lessons learned.

5 Techniques for Caring for a Dementia Patient

memory-loss

I have been caring for my dad for about 4 years, 3 of which were remotely and the last one locally. Like everyone dealing with caring for a parent or other loved one, there is no advance cramming you can do to prepare for this job – you wake up one day and suddenly you need to be an expert in all things elder-care. It is the ONLY job that doesn’t come with a manual and there are few resources to help you other than learning on the job.

I thought it might be helpful to share some of the techniques I have developed and learned over this time period. These work with my dad, and I hope that they might be useful to you.  Unfortunately, there are over 70 different types of dementias so your loved one’s situation may be different from my fathers, but all dementias have many crossovers, so it’s worth trying some of these techniques.  You have nothing to lose.

  1. Pay attention. Be observant. To everything. I missed so many red flags when he was deteriorating.  I was so concerned with pushing him into assisted living that I stupidly was relying on him (someone who I now know had the early stages of dementia) to tell me when he was ready.  If you aren’t there, every day, then make sure a neighbor is watching out for signs.  Some of the early signs that I DID KNOW about didn’t register to me as signs.  Here they are:
    • Losing the ability to “work” the remote control on the TV; or conversely, saying that his/her TV is broken. Again.
    • Difficulty doing tasks that were, before, second nature.  In my case, my dad could send emails, was on facebook and was pretty “with it” for a guy in his mid-80s. The day I spent one full hour with him on the phone trying to instruct him how to open a browser window, should have been more than a red flag; it should have been a rocket blast. But it wasn’t.  Because I didn’t know anything about dementia.  I thought it was simply, short-term memory impairment.  It is so much more.
    • Impaired judgment.  One day, my dad decided to reheat a slice of leftover pizza. So he put the tin-foil-wrapped slice right on top of the burner and turned the burner on. Can you spell F-I-R-E? Again, didn’t register as a red flag.
    • Word finding difficulties.  This comes with aging for all of us.  It doesn’t necessarily mean dementia, but it is a possible pre-curser.  So if you see signs of this, be even MORE tuned in for other signs.
    • Forgetting doctor appointments or to take medicine. My dad even forgot that he brought his walker to lunch.  After lunch, he went crazy looking for it in his room because he had literally no recollection of it every leaving his apartment.
  2. When you enter the room where your loved one is sitting, make sure you are directly in front of them and have made eye contact.  First offer your hand (even if you plan to hug them next). By offering your hand, you give them time to process who you are. Processing slows down with Dementia.  Their vision narrows and eventually becomes binocular so don’t come at him from the side as you may startle them.  The instinct to shake hands will never leave them and by extending your hand to them, they will take yours instinctively.  Then tell them who you are, even if you think they should know you. And make sure to tell them your relationship.  “Hi Uncle Paul, it’s Bev, your niece.”
  3. Always tell them what you are about to do or where you are going (if you move them). Their world is very scary right now.  They want advance notice of any changes. The fewer changes you can make, the more comfortable they are.  If you never take them from the facility where they are living, they won’t care, as long as their routine isn’t disrupted.  For them, routine means safety.
  4. If you are a healthcare provider and want to take their blood pressure or re-bandage a wound, make sure to tell them what you are going to do and why and then, most importantly, ASK THEIR PERMISSION TO DO SO.  They have so little control left; they want to retain control over their body.
  5. Try to focus your activities on things they can still do.  Music is a wonderful activity as it is retained in a part of the brain that is unaffected by Dementia.  Dance together.  Do karaoke. Play name that tune. Play catch with a beach ball or a football, even from a seated position.  Hand eye coordination seems to stay in place and it can be fun!
I will continue with more techniques in future blog posts, so check back.  And if you haven’t subscribed, please sign up so you’ll get the next blog post delivered to your email. And finally, if you have any techniques that have worked for you, PLEASE SHARE THEM WITH ME!  I am always learning on this job.