Walking a mile in my shoes

Some time ago, a friend of mine in her blog, wrote the following entry;
http://thehollytree.bravejournal.com/entry/21587

I am reminded of that entry now, as I struggle with some decisions that other people say "I have to make." Decisions that are some of the toughest I have ever done.

A brief history lesson is needed to explain why I am having such a tough time. Picture it---the spring/fall of 1998. My Grandfather was diagnosed with Prostate Cancer. (Actually I didn't find out until late in that year and then the news was delivered to me by Gram---Pal knew it would rock my world). It did, it rocked my world, but I want us all to stop and think for a moment of what it did to Gram. This was a man she knew since she was 6 and he was 7. They grew up together, they went to school together, they fell in love, got married and at the time of his diagnosis had been married for just over 6 decades (60 years).

So while the rest of us leaned on Gram for the strength we need to be there for Grandpa, who did she lean on? Who did she turn too for comfort and support? No one (and I include myself in this) because we were all too wrapped up in making sure Pal had our love and support. Was that fair? No, Gram could have used some too. And she should have had just as much as Pal did.

And unfortunately, things just continued to turn upside down for the two of them. Before Pal could start treatment for his cancer, his ticker (heart) began acting up, to the point where he was hospitalized in the CICU (Cardiac Intensive Care Unit) with an angina attack, just after Christmas of 1998. Again, the family looked towards Gram for strength and courage, instead of allowing her to look to us for her strength and courage.

During that time, not only did the family fail Gram, but the medical system did as well. You see Grandpa's angina attack was caused by a leaky valve. The only way to repair that valve was for him to undergo angioplasty. And the only hospital that does that type of procedure is VGH (Vancouver General). And this was where the system failed both of them. Instead of being able to come home and rest and then check himself into VGH for the procedure, Pal had to remain in the Cardiac Step down unit at Surrey Memorial. Had he come home, then he would have been placed on a waiting list and not had the procedure until approximately August of 1999. As long as he remained in Surrey Memorial, then he was further up the wait list and in fact, would be considered almost an emergency type of case.

Again the family (myself included) leaned on Gram instead of the other way, especially when we were told by Pal's cardiologist that even if he had the procedure, it was no guarantee that the problem would be corrected. And worse, if we chose to wait until August, no guarantee he (Pal) would live that long. So early January 1999, Pal was transferred to VGH, had the procedure and was home a few days later.

But at this time, things went from bad to worse. For one of the medications he had to take from then on was IMHO the absolute worst he could have been placed on. It was called Prednisone and the following link explains in detail all the information;

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601102.html

IMHO this drug needs to be banned from use. Surely with all the technology/research at scientist's disposal, someone somewhere could come up with a drug that works the same as Prednisone but without the deadly side effects. Perhaps later, I'll open up the blog for discussion about the dangers of Prednisone, but now back to the history lesson.

We settled into somewhat of a "normal" routine, and things seemed to be going along quite smoothly. There was even talk of Gram and Pal resuming their ballroom dancing outings for seniors (outings that had been interrupted by knee replacement surgery for Gram). But it was not to be, for on June 3, 1999 our world was once again rocked by an unexpected medical diagnosis. It was nothing to do with Pal, this time it dealt with Gram. She had been diagnosed with Parkinson's (see the following link for information);

http://en.wikipedia.org/wiki/Parkinson's_disease

Again with Pal's health continuing to deteriorate, Gram couldn't look to him for support or to help her deal with this devastating news. She couldn't even look to the family (most of us were still so wrapped up with dealing with Pal---who was trying to decide the best course of treatment to deal with his cancer---as for me, I was dealing with my own personal crisis of trying to find a job). So Gram just soldiered on alone, which as I found out later is the absolute worst thing a Parkinson's sufferer can do.

So fast forward to May of 2000. Once again Grandpa had to be hospitalized with heart problems. IMHO, they were probably caused by the damn Prednisone. About this time, although as a family we were never officially told, (Gram possibly had been---to this day I haven't had the heart to ask her), Pal began showing signs of CHF (Congestive Heart Failure). In fact, Gram and Grandpa's 61st Wedding Anniversary was spent in Surrey Memorial. If Gram had been told about the CHF, this time she chose not to tell the family, because she knew she wouldn't be able to depend on us for support.

Now come forward even further to September 2000, September 14, 2000 to be exact. That day I met with Dr. Kalsi (Gram, Pal and I shared the same family physician) on what I thought was a routine personal matter. Well it turned out to be anything but routine. To this day I don't know what possessed me, but I found myself asking Dr. Kalsi how much longer Pal had. Dr. Kalsi told me that Pal had at most 6 months, which meant if we were lucky, he would live to see his 84th Birthday. I chose not to say anything because I knew that Pal was scheduled for his own appointment the next day, and felt it best that he and Gram hear the devastating news from a medical professional. In a way, you could say that I was protecting both of them. You see, although Pal had the angioplasty and was advised to cut down on red meat, he wouldn't, instead choosing to live by his favorite saying "I'm living on borrowed time anyway."

So knowing that we had a limited amount of time left, I spent it worrying and trying to help Pal (again forgetting Gram and her needs). In fact, by this time Pal, had become wheelchair bound, the Prednisone having weakened his body so much. And in a way, it had weakened his immune system too. He, Gram and my Mother had been out somewhere earlier in July and he had unfortunately taken a tumble and had some scrapes on his arm. Well, we treated those ourselves and thought they had healed on their own. Unfortunately, because of IMHO the Prednisone, and unbeknownst to us, Pal had become susceptible to infections and didn't have the immune system to fight them with. So, on Sunday Sept 17th, 1999, we had to take him to emergency after his arm became swollen and infected in the general area of the scrapes from the fall.

Again, the health-care system failed him and Gram. He was diagnosed with septicemia (following link for more information; http://www.nlm.nih.gov/medlineplus/ency/article/001355.htm) and instead of being admitted to the hospital for aggressive treatment, he was treated as an outpatient. And on Monday September 18, 2000 during his treatment, Pal died. Mind you, as Gram told Gary and I later, she speculated that the medical team treating Pal, were talking about taking his arm off surgically to save his life. Well for anyone who knew my Grandfather, to live without an arm, would have been to him a fate worse than death.

And again, the family (me included) instead of reaching out to Gram and letting her grieve the loss of the man she loved and had known for close to 8 decades (76 years---married for 61), expected her to support us and our grief.

Come forward to today, almost 7 years after Pal died. As I said earlier, the worst thing a Parkinson's sufferer can do is deal with stressful issues by themselves. The result is that the tremors become so bad, they can hardly hold onto anything much less help the caregiver help them. So having realized that through researching the disease as well as trial and error, I not only encourage Gram to talk about what is bothering her, I try not to make any decisions that could cause the tremors to flare up.

As you know from my previous post, we found a stray Mother Cat and family in April, with the additional brood born one week ago today. Now well meaning family and friends have told me we need to get rid of some and I have to play the heavy and do it. I won't. The decision as to which cats will stay and which will go, has to be done by my Mother upon her return. The biggest reason why I can't/won't is the effect the cats are having on Gram. She's more cheerful, she talks more, wants to do more things. Where before we had the cats, I feel she was just marking time until she rejoined my Grandfather. Even Dr. Kalsi has noticed a marked improvement and this from a man who was ready to write Gram's obituary for about this time next year.

So to my well meaning friends and family and ultimately the point of this entire post, is do not under any circumstances expect me to make decisions for Gram or about Gram that will have a negative affect on her Parkinson's. And for those of you who insist on telling me "you know what I am going through." You don't!!! Not unless you have lived with a Parkinson's sufferer 24/7/365. Until you have walked a mile in my shoes dealing with this problem, please don't claim otherwise.

More Later I'm sure

PS. As I finally type the last few sentences, Vic, and Figaro Jr. are on top of Gram while Tiger tucked himself beside her left shoulder and arm after I put her to bed. Very comforting for a woman who hasn't had a true reason to enjoy what life has to offer since the spring of 1996