Help Helps \ by Valerie Halla

As I continue my role as my husband’s caregiver, I see and learn and appreciate a lot that I was never expecting. First off, after 7 months of constant caregiving, I’m hopeful. All this after being ticked off at first that my freedom and life were gone. Why am I angry? Because I’m working 24/7! Why can’t I get in the car and just drive to the beach? Because I cannot leave my husband alone. Will I ever have fun anymore? I need some fun! I forget what it’s like. Can I get up four times a night to help my partner and lose sleep and survive? Barely. Something has to change.

I have learned how to lift properly using the Gait belt, I have gotten equipment to help ease the situation, dealt with the many medications and organized them,given my mate baths with a handheld shower, gotten strong support with a health care company and approached the situation less strictly, because after awhile you just get through the day the best you can. You have stains on your sweatpants? Nobody will notice. We will wash them next week. Your nails need to be clipped? Let’s do that tomorrow. You throw caution to the wind and turn inward. You realize – I’m alone in this and I’m sorta functioning, but a little voice bounces back: I need help. How do I ask for help? Why can’t I do this? I need to try. Asking can’t hurt.

The brightest lightest crack of hope came when I went to lunch with two friends about one month ago and spilled my guts about how I felt guilty yet angry for having to care for my husband 24/7 which felt like forever/7! They were both telling me, urging me, pleading with me to get help. I shouldn’t feel guilty they told me. They even googled places to contact. They added up out of pocket costs and who to ask. They made it clear that I could get support.

Now I have been doing research myself and reaching out to agencies for caregiver assistance. I’m self educating myself about laws and regulations for help. I’m starting to feel some relief. I’m starting to research where to go and how to ask for support. A caregiver is coming next week to help four days a week. Hallelujah.

Some of my neighbors also have been asking how they can help and I used to just say, “I am fine,” but now I give them a date and time to specifically ask if they could come sit with husband while I go do errands or go with friends for coffee or lunch, People want to know how they can help. It helps to give them a chance to help. They actually want to help in a small way or even a large way. They’re all offering different kinds of help. I’m not shy nor stubborn about getting help any more. It’s pure sunshine coming into my previously dark life. Even our family has stepped up. I’m so glad people are so supportive, patient and kind. It makes me feel that I am not alone. Help is appreciated and needed. Just try it – go ahead.

I have been fortunate while caring for my husband who has melanoma brain cancer, that neighbors have stopped in once in a while and stayed with him while I take a walk with the dog or go out with friends for lunch or do errands. It’s nice to take a break and just short ones can go a long way in renewing your energy. We have one friend who brings treats and snacks.

This friend brought over homemade chocolate brownies with chopped walnuts. We chatted a bit then suggested we go sit in the sun out on the patio out front where it was sunny and warm. I got Ken down the two steps on our front porch going backwards just like the kind young Occupational Therapist had trained me to do. We two sat in lawn chairs and my husband sat comfortably in the wheelchair with a baseball cap on just soaking up the delicious sunshine. What an idea to simply take our conversation outside. The move immediately lifted our spirits, helping not only the patient but helping the caregiver and visitor. Then I decided to bring the brownies outside. Not only were we in sunshine warmth but now we reveled in chocolatey heaven, munching on chewy delicious brownies. It did us all good.

The breaks you take don’t have to be long nor far away. The simplest ones feel like a long nap, rejuvenating every sore muscle and aching back. Our brownie backing phenom is an angel in disguise. While my husband and I get frustrated sitting at home waiting for the next meal when I give him his next round of pills, this good friend comes by with treats and stories to share while we sit in the bright spring sunshine. He has also brought a giant jar of biscotti, a plate of chocolate chip yum cookies, a frozen lasagne, and also shared books he finds helpful.

Another neighbor came over this week to say hi to us as we sat outside and walked casually over to the front porch.

“You haven’t gotten ramps made yet for the wheelchair. I can make them. I’ve got the supplies,” he said nonchalantly. He pulled out a tape measure and started measuring the doorway, then the first step down out the front door. The next step at the porch end he measure next as talked the whole time. He is known in the neighborhood as a real chatterbox and you don’t get much chance to cut in once he starts gabbing. We just let him go. As he left with measurements recorded on his phone, I mentioned we could maybe pay him or reimburse him for materials. Geez, was that a mistake. He wanted to help us out since we were having to go through cancer and tough times in our old age.

He brought one ramp the next day and the last one the following day complete with indoor/outdoor carpet lining both ramps. They were definitely homemade but did the trick. No more struggling to get my husband in his wheelchair out the front door and into the car for appointments. This neighbor definitely is a true helpful person. We had put off getting ramps and just struggled through for months. This kind man helped immensely with just a simple gesture and our life was easier in just a couple days time. We are so thankful for our neighbor.

When people have cancer, you know they are on a lot of meds plus they are dealing with maybe chemo or immunotherapy treatments. Prescriptions pile up. We have one entire shelf in our kitchen stocked with medication, vitamins and dare I say it? Yup, laxatives. Old folks get to be pretty familiar with the subject.

It can be embarrassing, emotional and moving, quite moving, when it comes to – dare I say – constipation, another difficult word. It’s an education in itself knowing which laxatives work. There are little pills in bright colors, liquids, gritty powders, white milky concoctions, one even combines the words MIRACLE AND LAX, and there are flavored candy ones, and don’t get me started on the difference between laxatives and here goes, stool softeners. I will admit you can get involved more than you intend with reading labels and finding which products work. And you might need time to determine if a laxative, pardon me, produces results. Don’t give up though, however frustrating the search can be. Constipation is uncomfortable to experience as well as discuss on any level, especially if you’re young.

There is also a tea you can drink to help get unstuck. It’s called Smooth Move and it is a laxative also. It’s a soothing, hot and relaxing drink. I think the word “laxative” comes down to another word: relax. It’s important to relax and let the relaxative work.

When I was younger, I would’ve fainted with embarrassment discussing constipation, laxatives and being regular. Those were dirty words which I avoided like other terms: bowel movement, diarrhea, colons and so on. Heaven forbid even thinking of those, Who needs those bad words in their fresh young mind?

Our 40 year old son recently helped grocery shop and accidentally bought a popular laxative for us (if laxatives can even be popular) since they weren’t what we wanted. He brought home by mistake suppositories not pills. We asked him to please return them. He kindly obliged. Taking the bottle of suppositories and the receipt back to the pharmacy counter, he explained to the young man behind the counter that he didn’t want this laxative type – suppositories. The pharmacy sales representative looked confused and said they WERE a laxative – why weren’t they satisfactory? So our son explained that they were suppositories and tried to crudely explain how they’re used but our son got cut off. The sales representative held up his hand halfway through the explanation and stopped the conversation.

“Say no more, please,” the young man replied and proceeded to refund our son the money and take back the bottle of suppositories, no more explaining needed.

Here’s hoping you’re doing well in the regularity department and can be just a regular person in more ways than one.

I gotta go now and drink my prune juice. Hey! Don’t get me started again.

When you have someone dealing with cancer, you need to have the right equipment and resources. The professional physical therapists, occupational therapists and home health care nurses know what’s best. They are teaching me, the new healthcare giver, so much. It’s not easy teaching an old dog new tricks and being an old one who knows, it’s not easy teaching this old dog any tricks at all. But I’m trying to learn. The pros who come into our house to help are fantastic. They know how to help and support my husband as he deals with melanoma brain cancer and all that goes with it.

We have lived in our house since 1986 and added on plus remodeled but for my husband to get around we added a tension pole, a special arm release toilet that goes over the regular toilet and a shower tub bench. A useful tool in helping him move from wheelchair to couch or chair was the Gait belt. The PT is also using a side walker or hemi- walker to get my husband up and learning to walk around properly.

I’m in charge of the medications so these pill organizers have helped me stay on top of when he needs pills and what dose. I use one for nighttime meds and one for daytime medications.

I have to stress the importance of professional help. I was at a loss when my husband was diagnosed with cancer then had cyber knife treatments, started immunotherapy and later had seizures and couldn’t walk well. We were overwhelmed at what to do but a home healthcare company saved us! The physical therapist recommended equipment and aides then he came and installed it for us! The occupational therapist also helped with the best setup for our house and above all the safest setups. He gave suggestions and examples on how to get my husband stronger, more mobile and comfortable thereby increasing his self confidence at the same time.They both practiced exercises and movements for him to do to improve his overall strength. They were downright amazing.

The pole is a conversation piece when people come to visit and a few have even taken pictures. Some mention pole dancers but we’re just keeping it simple for now. Don’t think we should need to put up signs: NO POLE DANCING ALLOWED – at least not for now.

When my husband and I were called one day soon after his melanoma brain cancer diagnosis by the admitting department at Stanford, we jumped at the chance like two Jack rabbits on steroids, taking at least 4mg of steroids twice a day…with food. His primary care physician had referred him to a neurosurgeon at Stanford and we thought it would be months to get in but it took only a few weeks. We were beyond grateful. We were told to go to admitting at Stanford Palo Alto the next day.

We had previously attended an appointment with a neurosurgeon who accepted my husband after seeing brain scans also and he definitely expedited the process as well. In September we set out on a journey where Ken drove from his hospital bed on a bumpy road in a wheelchair trip for a biopsy under one arm which confirmed an unusual under the skin melanoma which metastasized to his brain. Many tumors were found in his brain He was often picked up from his bed by hospital staff to travel by wheelchair many times for CT scans and MRI tests. One time they took him to a specialist who made a mask for him. Not your normal Halloween mask. This mask would be fastened down on a table where it would hold his head still and would help with pinpointing radiation. This was called cyber knife treatment. We had never heard of cyber knife treatment. Was a true knife used? Was it really developed in cyberspace? Was it made popular by some sci fi movie? No and no. No. It sounded really awesome but no real knife was used and cyber is added to the term since it sounds cool. It was developed in the 1980’s and in 1991 used at Stanford. We were impressed. The best news was that no surgery would be needed on the 13 brain tumors…for now.

The treatment was used and after nine days in the hospital, with our wonderful kids and others visiting my husband, he was discharged and was going home. At that point he could walk and make sense in conversations. Things have changed since September. We have had our lives change. We’re still on the journey but our vehicles have shifted from fast moving sports cars at first to slow moving model T style vehicles slogging along with many flat tires along the medical roadways. We’re in a routine now and feeling more settled dealing with cancer, seizures and mobility issues. Our model T is parked out front. It’s gassed up but not going anywhere. We’re having setbacks and roadblocks. Will keep you posted.

When I found out my husband had melanoma metastatic brain cancer, it was at first not sinking in. No, the doctors and scans must be wrong. That cannot be true.

After more tests and a sobering visit to a Stanford neurosurgeon, complete with computer images showing the tumors, and detailed explanations, it did sink in, and the shock was felt and was overwhelming us and carrying us away on a tidal wave of emotions. Sometimes we’d be on the crest of the giant wave of feelings and other times we would come crashing down, covered in watery frothy clouds of despair. We’d be down a long time. Not drowning but barely keeping our heads above water.

Ken said one day to me that our lives would never be the same again and that’s true. Within about six months we went from Ken driving us everywhere to me driving. Over the months he had trouble walking which is the most difficult part of this change in our lifestyle. After treatments on the brain tumors and experiencing seizures, Ken is unable to do many things he could navigate just a few weeks ago.

We have been installing and learning about useful items to order or get through advice from a visiting physical therapist and occupational therapist since we signed up with a home health care company. We have gotten a wheelchair, special toilet that fits over regular one, a pole that works with tension so Ken can hold on and pull himself up, a shower tub bench, safety bars installed in a shower, a gait belt with handles to move him more easily, and a gel cushion for sitting comfortably in the wheelchair. There’s more, but it’s overwhelming to figure out how best to use all these items. It’s a lot for me to learn since I am the caregiver. I didn’t have to fill out an application, nor send in my resume or email my experience and qualifications for the job. I got it and I’m receiving on the job, hands on training. Ken is my best patient, my best partner and my only one. He can’t fire me and I can’t quit. This is part of being 70ish. I’m ready for the challenges even if I wasn’t ready a few months ago.

Neighbors, family and friends are helping by saying or texting things like: let us know if you need anything or we’re here for you any time of day or night or whatever you need don’t hesitate to ask/ if you need a walking buddy, groceries or food delivered, let us know. These people have been amazingly supportive. I’m definitely leaning on them for moral support as well as supplying trips to the grocery store, treatment centers and doctor’s appointments.

The Big C cannot be erased from our lives, but we can deal with it. I wouldn’t say we’re fighting cancer. We’re delaying it and sidestepping it. We’re learning how to live with it, as an older couple in their 70’s. Ready or not, here it comes.

If you have ever been to the gym or physical therapy, some trainers have crazy names for certain exercises or stretches. For instance, I usually do a floor exercise called the Dead Bug. It’s hard to explain let alone carry out but the other day I was trying to do 15 reps of 3 sets and I hurt myself. As I lay there saying ouch and some other cool words a few times, thinking about a possible scenario if I had to see a doctor, this came to mind.

“Doctor, I was trying to do 15 reps of the Dead Bug on the floor and hurt myself,” I would say.

“You mean you were on the floor after going after it and stomping on a dead bug?” the doctor might reply.

“No, I was exercising doing the Dead Bug and I think maybe I pulled a muscle. It hurts.”

“So is this bug dead? Were you trying to kill this bug? Did it hurt you?”

“No, Doctor. I was just lying down on my back with my knees bent and my arms straight up and doing the Dead Bug,” I explained.

“Ohhh, the dead bug is a dance!” this doctor might counter. “Or is it a Yoga pose?”

I was done trying to explain, in my imaginary meeting with this ghost doctor. I next would tell him or her about other exercises I knew.

“Doctor, I’m 70ish and trying to regularly exercise and I do a series of things like Cat Cows, Donkey Kicks, Clam Shells and the Bird Dog,” I informed him, like I knew what I was talking about.

The doctor would firmly say, “Here’s a prescription for pain. Next time don’t come see me. See a veterinarian!”

You know when we hit the 70’s in age, there are many things we need to face and experience especially regarding our health, not just exercising.

I went to the eye doctor last week finally. I hadn’t been to get my eyes checked for four years. The pandemic had kept me away plus a large dose of procrastination plus fears of facing the truth about my failing, fuzzy, unclear vision. Was I ready to see what was on line four at Dr. Lester’s office? Was I ready to take all those tests of my peripheral vision, recognize dots that move around on a field of white, have lights flashed in my eyes and answer questions challenging which letters I could see?

“Here’s one, here’s two. Which is clearer- one – click – or two? Click. One or two? Can you read any of those?”

“They both look pretty similar,” I replied to the doctor. I had to look through these lenses with a contraption pushed up against my eyes and nose. It was kinda like wearing a Halloween mask without the fun. He continued to project lines of letters all of which didn’t spell one darn word.

“Okay, here’s three, and four. Which is sharper, not just darker, but clearer?” He kept asking me this as he projected the lines of letters over and over. “Three or four?” Was that one a capital B or an 8? I’m not even sure there were numbers mixed in and why did some lines look like secret codes spies would use? I got more and more confused. Couldn’t they just flash lines of song lyrics or something fun to read instead of random letters? Jokes would work for me. Who writes this stuff? Probably some retired first grade teacher who studied the alphabet in reverse then got vindictive and threw in some numbers here and there.

Obviously I wasn’t passing these tests which is understandable because I hadn’t studied. When we were almost finished, the eye doctor exclaimed as he shone a tiny light into my eye and told me to look past his ear. “Oh my! Yup. It’s a cataract cloudy and thick. No wonder you cannot see out of your right eye very well.”

He said the other eye wasn’t as bad but I would need to go have cataract surgery on both and then return in a couple months for new glasses. He went over certain other tests and explained the anatomy of the eye which I sure hope he doesn’t test me on because I was getting pretty tired by then and would fail that also or maybe pull off a D-.

I was like a happy kid walking or rather skipping out of there into freedom and a chance I wouldn’t have anymore tests for some time. The questions had been tough and the exams were long, but the point is: get tested and see your doctors. It is important. Don’t be like me and put it off. So keep exercising and get your eyes checked regularly. Thank goodness for great health, experienced doctors, veterinarians and yoga instructors. Down dog!

BUT WE DO NOT LIKE VETERINARIANS.

Met up with an old friend today who my husband and I have known for 37 years. We see him more often now since his wife passed away and he needs good friends supporting him in these tough times.

We talked for 3 and a half hours at a local coffee shop discussing our recent holiday trips. All of us had seen family and had been going new places. We shared all the things we had done lately. Then since we’re 70ish we brought up old stories and people from our past. When we’re 70ish, it’s comforting to talk to friends who are 70ish.

We both hugged our friend as we first walked into the local coffee shop, I lifted my head up and said, “I don’t want to get makeup on your jacket!”

Our friend said, as he often does, “it’s all right. Oh, I have a makeup story!” He has lots of great stories with a solid memory to back them up. He started to tell us about when he was a teenager growing up in New Mexico and was dating a twin. His friend and he went double dating to their high school prom with Vonna and Donna. The twins tried to switch places but the guys knew they were trying to trick them because the twins had slight differences in speech and one was nearsighted and kept asking, “Who is that coming toward us?”

The twin our friend dated also wore thick foundation and loads of makeup. Our friend had borrowed his father’s white dinner jacket for prom night and when he got home, it was all stained on the shoulder with makeup. His Dad didn’t say anything to our friend’s relief and took the dinner jacket to the dry cleaner. Then in another few days he took the same girl to her prom because she went to a different high school. He asked to borrow the jacket from his dad again and without a word, his dad handed him the white dinner jacket, clean and bright. Boy was he happy.

Our old friend can tell stories all day long. Just mention something like “makeup” and he’ll tell you a story. Or like one of us mentioned how our hearing is getting worse since we’re 70ish. Boom. He told a story about his wife a few years back making him go get a hearing test. The doctor said that he had lost a little hearing but overall passed the test and can hear well. Going home that day after his doctor visit, he shared this with his wife. She was so ticked off and angry. She said,”So if your hearing is fine, then you just must not be listening to me when I talk.” He said he tried to listen to her more closely after that.