The Funeral Director

Yesterday, I stopped in at the funeral home to sign the paperwork. Can anything be so morbid? Or a slap in the face reality check?  I was picking out his casket. Somethings are just easier to do when not blinded by grief...this is one of them. The good Lord knows I've been in that spot too many times.

I've known this funeral director for over 30 years (she's only 47). She went to high school with one of my younger, adopted sisters. Her daddy buried my mother before he got political ambitions. Yep, it's a family run business rather than a corporation run funeral home and it's a dying breed if you'll excuse the pun. I'll deal with independents rather than corporations any day. They are a tad bit more expensive, but the add-on value is fabulous. They have more wiggle room and better customer service. We've used them eight times already for family and more than I can count for friends. I just wish I didn't only see her or her sister when there is a need for their service.

The casket

I knew my hubby wanted a cheap casket. He wants to leave me with as much money as possible from the insurance. Of course.I have other sources of money too upon his death, but I won't go into that here. I asked the funeral director to show me the cheapest besides the pauper's funeral one ( a plain, black, plastic box). She showed it to me, and then I asked to see the next higher one in price. It just so happened to be in my husband's favorite color, blue. It has silver handles and fittings which made for a nice contrast. It was like a gift that was perfect. The difference in price was $300 so I splurged.

The mahogany one in the background has a price of over four grand. While gorgeous, I couldn't justify the price to bury his empty shell. I mean everything I love about my husband will not be in his body anymore.

I've seen television commercial about how expensive burials are, but the final tally shocked me a bit. By the time you add in the flowers, minister fees, organist fees, head stone, etc... my husband's burial will set me back $10 grand. And, I was being modest and thrifty! Put in perspective, that's 1/8 the original cost of my house. I'm not complaining, mind you, but still. It's a one shot deal.

The burial plot was free, thank goodness, because we are members of the church. We had chosen ours to be by his parents at the time of their death. The only cost involved is a maintenance fund but that's for the entire cemetery. This fund is huge because some of the graves go back to the 1700's. As a historical landmark, the church is also entitled to State funds to preserve it. But it is private and open to church members only. I decided long ago that I wanted to be cremated so to save expenses when I die, but my husband has a different mindset. Lord knows, I don't want to be haunted by his angry spirit after he's gone. So the funeral is set just waiting on him to draw his last breath.

Each time he wakes up, I'm greeted with a cheery, "Hi ba-by! I love you!" It doesn't matter if it was five minutes earlier and he'd drifted off to sleep in between, or hours. Although his speech is slurred and marked with aphasia, I understand every word. He has such a peaceful smile on his face once the pain is deadened. I almost envy him. It's taking almost 70-80 mgs of morphine every couple of hours to maintain that serenity now. Angels are whispering in his ear. One of these times, he will go with them. But everything that can be prepared in advance is finally finished. Now I just answer him back with my own "Hi! I love you" and meaning every word.

Comfort Only Time

The hospice nurse just left. It's comfort only time. Just keep him sedated. I don't have to worry about food or fluids. This stage could last a day or a month. My Irish leprechaun just wants to keep on fighting to be here though. I don't know whether to sigh with relief or cry. I always hate this stage. 

I've been here too many times with too many loved ones.

Yesterday, thirty-six years ago, my mother hit this stage. I've got an odd sense of dejavu and am struck by the irony of the timing.

Thursday's Tumbles and Stumbles: Dry Needling Finally!

As you may have read a few weeks ago, my dry Needling PT had to return to Scotland because his mother had a bad turn health wise. Well, she passed on to Glory so my appointment was postponed until the 20th. I was in limbo between my Botox injections kicking in and the next scheduled appointment with my therapist. As a result my spasticity returned to where my elbow locked into a 45 degree angle and my foot inverted enough to raise a sore, reddish spot on my foot, it did not rupture. Thank God, but it did make getting about a bit more difficult. The elbow locked with spasticity almost nonstop was a far cry better than it being tight against my chest so the dry needling is working.

Also as a result of my therapist working to release my steel trap (trapezius muscle in my shoulder), it worked so well that I began noticing the tightness of the other side. More like a chronic ache more than pain. My trap on my affected side was still tightening, but not near as much as my unaffected side. Mind you, I'm not complaining. It's just an observation.

The spasticity wasn't even back square one when my therapist came back which is a HUGE blessing. So I'm hopeful that maybe this new therapy for my spasticity will work for the long term. At least that's what I'm praying for. But honestly, just getting full relief of any sort has been a blessing. I've struggled with the pain for far too long. You just can't imagine how liberating being free of pain really is unless you've dealt with chronic, long term pain.

An update on my hubby dearest, Spring has sprung with a little bounce back. He has lost another pound. :(  But in spite of that, he's in good spirits. He even played a game of "Go Fish" with our 13 and 8-year old grandsons last week before he had to rest.

This past Monday, he asked if he could sit outside on the front porch. This is the first time in 18 months that he has actually been outside the house for more than five minutes. It's been in the 70s/low 80s here during the day. So it is Spring. The No-See-ems (gnats) were out in force once the sun set though. Yeah, I'm allergic to those too with the same kinds of reactions as to mosquito bites. So I brought him inside again, but he was relaxed and almost chipper. He was also ready for another nap. The fresh air did him some good because his skin was not the usual gray colored.

He asked if he could go for a drive sometime next week. No, not him driving. I just have to figure out how to get him into the car with his oxygen with only one hand so I'm glad her's given me a week. He hasn't been for a drive since I brought him home from the hospital 18 months ago too. I mean gasoline prices here have dropped from almost $4 a gallon to $2, but everything else has doubled in price since then.

I'm not hopeful at these signs of enjoying life again by him. I fear it's the high before the crash. I've seen this too many times before. But I can revel in it while it lasts.

Credit

My BFF, I've got only one, lives in New York. Don't get me wrong. I have friends and a few very close friends, but she is my only best friend for life. We've been friends since 1968. It was about the only time I went a full year in an American school when we met. We became fast friends, pen pals, confidant, and a host of other things despite the distance and years.

We never saw each other again until 1977 and I was pregnant with my oldest daughter. But even so, we were the same fast friends. What our dads called "gaggy girls." It was like no time had past. I spent two days reminiscing with my old
friend. To date we haven't seen each other since, but the letters, phone calls, and emails traverse the country back and forth.

Well, she suffered a stroke last year with no permanent damage. Once again, the emails flew. In January, she had another stroke. She was lucky and unlucky with the second. Lucky because one she survived, and two only minimal sensory damage. She was unlucky because she now suffers with aphasia. While she can actually speak the words aren't coming as easily as before and tend to be disjointed.

Now I wouldn't wish a stroke on my worst enemy let alone on my BFF. But, once again we share in this. She's older than me by a couple of months, but she calls me wiser. Why? I've always been able to break things down so they make sense to her. By me having a stroke first this time, I can help her heal, understand and recover. But in the meantime, I can give her love and support just like I always have. Who knows, maybe we'll see each other again in the future. Until then there's emails and Facebook.

So how has your week been?

Thursday's Tumbles and Stumbles

Ah, yes, it's Thursday again on The Murphey Sa-a-g-g-a-a. What would be a week without tumbles and stumbles in our lives...could I dare think normal? Don't worry, we ain't normal.

Oh, and Happy Thanksgiving y'all! Today was my grandmother's birthday. There's not a month that goes by when I'm not remembering some story about Grandma or being at her house. She was a feisty librarian. Wow, she would have been 114 today if she were still alive.

Well, I got my long awaited Botox series of shots. Eighteen in all with only six in my leg. The rest went into my pectoral muscle and arm. These shots are pleasant. They hurt big time. Think of a needle piercing the skin, going deep into a tight muscle, it wiggles around to hit the area that is spasming the worst and then, injecting Botox into it stretching it. Each and every shot is like this.

Why would someone purposefully subject themselves to this torture every four months? The relief it gives is worth all of it and more. The pain that sometimes reaches 9 out of 10 becomes a 2 at best.The muscle is relaxed, but still functional or at least it can move. I'm not yelping every time I try to move my shoulder. Ever try to bend forward to stand up and not have gravity pull your shoulder?

Needless to say, I left the office feeling like a pin cushion with red freckles at the injection sites. What made it worse was the sites on my lower leg was where my AFO rubs. I got home and grabbed a large bag of frozen peas and slid it under my arm. I could still move my arm away from my body six inches without screaming in pain. That's an improvement over previous shots.That's the nice thing about frozen peas or corn, it conforms to the space allowed. Twenty minutes under my arm and back in the freezer it goes until the next hour comes. Yes, I mark the bag so I don't cook them and eat them, Silly. I was still going to bruise thanks to the blood thinners I'm on.

You know that game teenagers play where they punch each other in the upper arm as hard as they can? From experience, I know that's how my arm and leg feel for several days after my Botox injections. My roughly seven pound arm will feel like fifty pounds. But the frozen peas help, because I can't take anti-inflammatories. Each day after the injection pain wears off, I'll try to stretch and move my arm. I use it as a gauge to know when to start therapy again. I had my first therapy session yesterday. The Botox is still sorting itself out in the muscles, but I can lift the arm almost 90 degrees from my body. Yeah! Yippee!

My darling hubby, DH, has some vision problems. He says that looking out of his left eye is like looking out of a frosted window. When looking out of his right eye there are black dots and sparkling lights. The left eye is cataracts. I can see them. His right eye is something different. It could be simple floaters in the eye or on the worst end he could have a partially detached retina. The poor man is already deaf. He doesn't need to go blind too. Both problems can be easily fixed without heavy anesthesia and outpatient. I had an appointment for him with the ophthalmologist, but Murphy's Law stepped in.  The transport wasn't arranged as easy as I thought. Both the hospice social worker and I dropped the ball. Next available appointment is January 2015, if he makes it that long.

Credit

He is also showing some neurological problems. He started with tremors in both of his legs and hands. I'm sure it's the tumor in his brain is causing this. He has also started lucid dreaming and it is difficult for him to tell if he is awake or sleeping. This is probably the morphine. He jumped out of bed chasing an intruder in our home. He didn't know he was dreaming until he hit his butt hit the floor and he knocked his head on the bed frame. His hospital bed has a metal frame. I heard him hit. By the time I got to him, he was still groggy, holding  his head with one hand and his hip with the other.

I checked him out for a fractured hip. Nope, he checked out fine. I checked his head for blood. Nope, just a goose egg starting to rise. He was definitely going to feel like crap later in the morning. The only thing needing a bandage was his upper arm where he sliced it on the bed on the way down.

At this point I'm seriously considering putting the rail back on, but once up I can't lower it one handed. I'm also considering moving my lift chair into the living room or actually having the kids do it. It sleeps fairly comfortable. I slept in it for four weeks each after my Achilles tendon repair surgery and after my abdominal surgery. I would definitely be closer to him. I'm not sure which is the better option.

My DH weighs 93 pounds as of yesterday. He's dwindling down. The recert nurse calculated his BMI on Monday and his number is 18.3 (19-24 is normal) Of course, the 19 is based on a small bone structure. He is large boned. My DH's weight upon coming into hospice service, his BMI was 24. The fact is that he is burning over 8,000 calories a day just in his breathing effort. He might, on a good day, take in 9,000, but those are rare even with all the chocolate he can eat, and Ensure.

Hospice drew blood for the first time in over a year, his values looked really good considering. Highs and lows where we expected them to be given his health status. Speaking of hospice, they out did themselves on Tuesday. The aide came to give him his bath, etc. Following on her heels was his nurse. Right after the nurse left, the social worker came by.  Then, the recert nurse called and wanted to his re-certification. I told her no. She could come the next evening instead. She agreed.  The social worker didn't leave our house until 7 PM. I should mentioned at this point that my DH's recert nurse is my neurologist's nurse practioner also... so it's all in the family. The only two missing from his team that didn't call was the clergy support and the doctor!

So we continue on for another week with tumbles and stumbles.

Stroke Class with Susan ~ Late Again, Perpetually

One of these days I actually going to attend the live class. Now, for the third week in a row, I was absent. I did manage to squeeze the 45 minutes in yesterday.

But then again, that's the beauty of this type of class. It fits your schedule. Mine is terribly hectic. That's why I think this exercise class will be a lasting thing with me except it's not a free trial anymore. There is a monthly subscription rate of $19.95. My personal pledge to do the exercises twice a week has fallen by the wayside this week with my new AFO fittings, OT, hospice, my hubby's pneumonia, and assorted other things. It's a real shame too since it was the last one I could attend.

I just can't get my life back to the orderly world I once had. My master juggler status has been a long forgotten feat since my stroke. I thought being a mom of five, two careers, caregiver for three elderly parents, and being an author was tough. I had no idea what tough was. My earlier life was just a primer for today and I'm failing miserably. Well maybe not failing, but only succeeding with a lot fewer balls. In some ways, I'm supremely thankful not being able to work.

This would be a salad plate

Part of the problem with not attending the exercise class is my husband's new eating schedule. We now have our big meal around one-ish instead of around six. The reason I say one-ish is because the time will vary because of when the aide, nurses, and appointments happen. Stroke Class is at 1:30. It may be closer to three before I can set a meal before him. But he's eating better. He's actually gained two whole pounds in the past month since the change over and his calorie intake has gained a whopping 300 calories per day. Yeah, I keep track. He now weigh 97 pounds. Five out of eight grandchildren now weigh more than he does.

I'm still measuring food by the tablespoons for him. We also do a reverse weight loss thing for him. It takes twenty minutes for the stomach to register it's full. So he crams as much food into his stomach for that amount of time. Granted he feels stuffed to the eyeballs afterwards, but he's getting almost twice as much calorie intake.

Yes, I could make it easier on him and myself by buying Ensure, but have you seen the cost of these nutrition supplements? $7.99 for six cans and that's for the store brand. It's not covered by insurance or hospice. It's cheaper to cook for him and give him vitamins. But I do give him one supplement about 11 PM to take with his bedtime medicines. For him, it's got to be dark chocolate and ice cold. It may mean going to up to three stores to find it-maybe on sale for a buck cheaper for me, but he's worth it. It accounts for one-third of our monthly food budget. But he's got to have it. The dying process is full of hidden costs between dying and dead.

Meanwhile, I watch what I'm eating the same way. I'm hoping with my new AFO to start exercising on my machine again because I can stand without pain for longer than thirty minutes. You'd think with all the stuff I do I'd lose weight, but no. Unhappily, I haven't. Round is still the shape I'm in. Between combating fluids with 40 mg of Lasix and a poor eating schedule, I still weigh more than I should. But since the Stroke Class with Susan is out of my price range, but my machine is available to me that may not be my legacy.

Nothing is impossible with determination.

St. Simons Made the List!

I was browsing yahoo news snippets this morning, and saw a familiar picture. The article was titled "America's Most Romantic Towns."

Sure enough when I opened it, my very own St. Simons Island was list #1 of 10! As if there was any doubt judging from the number of marriages I've officiated at before my stroke.

                      "No. 1 ST. SIMONS, GA • America’s top town for romance strikes the right balance between seclusion and accessibility. Located on one of Georgia’s Golden Isles, this southern-style beach town has both white sands and live oaks, and was a hit with readers in romance-friendly categories such as picnicking and charming cafés. You can rent bicycles, browse antique shops, and check out another undeniable marker of romantic destinations: the local lighthouse. Stay at the 34-room St. Simon’s Inn, and you’ll get a clear view of the 19th-century landmark. goldenisles.com (Photo by James Schwabel / Alamy)"

 

For me, coming in second was Driftwood Beach on Jekyll Island listed as #10 globally as most romantic beaches.

 

In other news- My purse is $1,300 is lighter today than it was yesterday. (My portion after insurance) It takes 5 months to save that much money on a fixed income. I had another series of Botox injections. 300 CCs worth in my lower and upper arm plus my pectoral muscle. Eighteen EMG guided needles probing (digging) for the exact spot. It should alleviate some of the spasticity in the arm relaxing the muscles some and breathing will become easier again. It only took two hours to accomplish that feat. Post stroke life is such a joy! 

 

Oh and I forgot to mention the private sitter fee for my hubby that is paid out of pocket. Yesterday was expensive but worth it! Fifteen dollars an hour times three hours. YOU HEAR THAT SOCIAL SECURITY? And, they say I should work outside the home instead of caring for my hubby. That savings isn't considered income though because it isn't taxable or deductible. Forgive me for ranting without warning.

The good news is that I've met my yearly out of pocket limit with this and a carotid artery scan I had done in January so after this the insurance will cover 100% for the rest of the year. It's really quite sad to reach your out of pocket expense for the year in February, but that's life post stroke and having a bad heart.

Another piece of news- My DH is on the mends of sorts. No he's still dying in slow increments, but he seems to have rallied a bit. It may be his body adjusting to the added morphine, but he's more lucid than he was. He is sleeping only about 18 hours a day which is a blessing to me. We are able to spend a couple more hours of together time. Every second is a blessing. Although he has more episodes of severe difficulty breathing, with that taken into consideration, he is smiling and laughing more.

Just thought you'd like to know.