CAREGIVER HINTS FROM ONE WHO KNOWS
If you happen to have the privilege of giving care to any of your loved ones, here are some suggestions:
(To keep this on a positive note, we will name the patient Peter as Peter (Pan) never wanted to grow up. His loving wife is Tinker B.)
Remember that one goal is for Peter to get well, (always think positively), but one must be realistic. Peter is in Hospice Care because the doctors in the hospital believe they could do nothing more to help him.The other goal is to provide comfort and ease the pain.
FIRST OF ALL, HOSPICE IS THE BEST
If it has been determined that Peter is not going to live much longer, Hospice comes to the rescue. Their care usually brings a doctor, nurse’s assistant, bath aid, social worker, volunteer (so that the caregiver can run to the store), and a friendly religious counselor. Sometimes they even can get a volunteer harpist to play and a massage therapist for a relaxing massage. Hospice brings a motorized bed (be sure to ask for the lift bar so the patient can lift himself up), a portable commode, a wheel chair, a bedside table (which can extend over the bed allowing Peter to place a drink or food on it), a walker and all of the meds needed to manage pain. Hospice workers also are available at any hour of the day by phone for emergency questions, even in the middle of the night. Their goal is to make the patient comfortable. They are NOT Doctor Assisted Suicide which takes a bit more time to set up in a state where it is legal. The other wonderful thing Hospice does is to get your meds delivered to you so that you are not constantly running out to the pharmacy. Hospice care costs are covered by Medicare (through the Medicare Hospice Benefit), Medicaid (in most states), and the Veteran’s Health Administration Hospice.
LOTS OF PILLOWS
You will need many different sizes of pillows (small, medium and large) as they help position and cushion Peter. Repositioning Peter constantly in his bed protects him from bed sores. When you move him, be sure to tell him that, “I am going to move you on your side” or whatever. In case he is sleeping, you might scare him. Our favorite pillow was the small pillow (neck pillow or small rectangle) which could be heated up in the microwave (only 1 minute). Heating the pillow was also a task which could be performed by one of the many folks standing around and feeling useless but still wanting to help. The brands include ‘Bucky’s’ and ‘The Warming House’ Original Herbal Packs and Neck Wraps. Some are filled with buckwheat seeds and can be frozen, too. They are pricey but provide heat fast.
The more small buckets… 4” high and 6” diameter …the better. This can mean coffee cans (keep the lid), large plastic milk containers, or those for water or vinegar. If the containers are too tall, cut off the top and put plastic bags inside them. You will not believe how useful they will be. Put a reserve bucket or two under Peter’s bed for occasional clean ups when you change bandages or drainage tubes. One can also be on the edge of the mattress under Peter’s arm for quick throw-ups. Tinker B came up with this idea and it is a superlative one.
NOISE… OTHERWISE KNOWN AS MUSIC
Your Peter might want to listen to his/her favorite CDs (get a boom box and yes, they still sell them at Best Buy). Much to our delight and surprise in these final days we found that Peter’s hearing had dramatically improved. Even if it is the TV broadcasting the Olympics or that CD, you may find yourself turning down the volume to a whisper! Loud noises irritate Peter. The other interesting tidbit is that as his hearing has improved, Peter can now hear your quiet conversations about his medical status even though you are talking far away in the kitchen when he appears to be asleep. Be careful what you say!
DISTRACT THE BRAIN FROM THINKING OF PAIN
If Peter is not lucky enough to be able to watch the Olympics color and action, maybe a nature show would give him something to look at… with the sound off of course. Anything is good if it takes Peter’s mind off of the pain.
EASY CLOTHES SHORT-CUT
While a fresh shirt sounds great, putting it on can be a challenge if Peter is lying flat on his back in bed. That is why Tinker B invented the hospital/t-shirt. Do you remember the open backed hospital gowns? Take an old t-shirt, preferably with long sleeves, and slice it open down the back from below the collar down the length of the shirt to the bottom. Then, you can easily put it on by putting the collar over Peter’s head, the arms through the armholes , tucking in the sides. Yes, the back is open but that is the side next to the sheet so it does not matter.
They keep Peter’s tender feet warm because he surely has “cold feet, warm heart.”
KEEP A LOG/DIARY
This might sound like busy work but you will be very glad that you kept this record. Hospice will too. Keep a log in a bright colored small notebook (attach the pen so you won’t be searching for one) and record everything. It will include what the situation is (date and time, how Peter is feeling, his temperature, how much JP drainage there is, body shaking, bowel movement and urine output, and complaints of pain, blankets making too hot or too cold, sleepiness or whatever). Then record what you did (list of meds, ice pack to forehead, hot pad to back or aching area) and the reaction (pain decreased, talking more, and responding to conversation, singing and other stimulation like looking into your eyes and being more aware of the world around him). Then, when you talk to Hospice, you will have exact records of Peter’s situation and your response.
SPONGE BATHS ARE A PIECE OF CAKE
Sponge baths are easy when you use “no rinse” cleansing foam or liquid in a spray bottle. You also can use the “no rinse” shampoo.
JELLO AND GATORADE
While it may not be super nutritious, these are tasty liquids which are easy to digest. Peter also liked small pieces of ice, water and warm and cold milk. Be sure to buy a bunch of big “bendy” straws. Hospice will provide the sponge oral mouth swabs.
During the time we are giving care, we are still optimists and hope that our Peter will survive (miracles can happen)! We try to amp up the protein he eats by giving Peter Bone Marrow Broth (by Ancient Nutrition). We added it to rice, soup, yogurt, smoothies, applesauce, Ensure, and practically everything except water. Peter noticed the taste and liked it. We tried both the Pure flavor and the Turmeric flavor. It takes time to make Peter stronger …. we may not have enough time, but we never give up trying until we get to the point when he can only digest clear liquids. If you have any leftover, you can give it to your favorite hard core athlete.
OTHER GOOD STUFF
Colorado Cousin Chris, a Cancer survivor, gave us good advice to take advantage of the legal medical marijuana in Oregon. Peter was able to relax and get less agitated while vaping (smoking weed) and eating the marijuana chocolates. The marijuana oil is very good in a massage. Peter does not say “far out” or ask us to play Black Sabbath’s Sweet Leaf or any Grateful Dead! We massage him with Turmeric too from a lipstick type tube. What the heck…you never know what will work.
BEST FEEL GOOD TOOLS
The simple things work the best. They include foot rubs, nursery songs, and other rubs on legs and backs. One morning, we interviewed Peter with a small hand-held recorder with his son present. We included questions about his life, the many places where he had lived, how he met his wife, and high school, sports, and college stories. His son and wife had never heard some of those stories before. Peter also loved it when his cat hopped up on the bed to visit.
REMEMBER THAT THE CAREGIVER NEEDS HELP TOO
Ask a friend or relative to stop by for 2-3 hours one or two times a week. This will give you a chance to wash your hair or take a nap or just walk around the block. If anyone asks “What can I do to help?” tell them that it would be lovely if they could come for lunch or dinner and maybe pick up something from that fun Chinese take-out place for you two to share. Just having someone to talk to is worth millions.
The other advice, which is sad but helpful, is to prepare for the worst. If you have a computer techy friend, they can help with some emails and other communication. Call the bank, the mortgage company, the car loan folks, Peter’s employer, and tell them the situation.
Be sure to get Peter’s passwords to everything. You might need to transfer titles and file for retirement.
Make sure your Peter’s cousins and best buddies know his situation. Also, make a list, in advance, of anyone you should call if anything happens.
Make your cremation or funeral arrangements in advance and you can find out what it costs too. It is much easier just to be able to call a phone number with a brief message when the time comes than have to set up everything when you are upset. With Hospice, you do not have to call 911, just call Hospice. They will record the approximate time of death as Peter is under their care. You should also look at the Obituaries in next Sunday’s newspaper and see what type you want. You can call to find out the cost, find a photo and write the details except for the last date. Even if it never gets published, you are ready and this is the best and easiest way to let folks know. Have you ever lost a friend and only found out months later? If you do not want your house bombarded by flower arrangements, think of Peter’s favorite charity and add a note to the bottom of the newspaper obit that “In lieu of flowers, please send a donation to http://www.neverlandanimalrescue.com.” Keep in mind that you are not asking for money for yourself. You are just trying to turn this sad time into something positive to honor Peter’s memory.
And last but not least, let your immediate family know now even if you think that Peter might have a miraculous recovery and will live to fly again. You would not be happy with yourself if you minimized the risk that Peter will pass away before the people who want to say goodbye can come or call or write.
It is difficult when all of this responsibility falls on the Caretaker but there is a special place in Heaven for those kind folks who help in this way.