In The News:
If you haven’t already seen the letters to the Editor in the Valley News be sure to check out the links below! Patsy (with the help of one of her caregivers who did the typing) wrote a personal letter and there was also an article that praised all those who contributed!
Patsy’s thanks letter: http://www.valleynewstoday.com/opinion/letters_to_editor/patsy-s-thanks/article_617330f0-c677-11e3-af6f-001a4bcf887a.html
P’Sghetti for Patsy Praise article:http://www.valleynewstoday.com/opinion/letters_to_editor/p-sghetti-for-patsy-praise/article_7885d77a-c677-11e3-8d9a-001a4bcf887a.html
May for the Martins
May will be a difficult month for the Martin family. On May 9thHolly has to have surgery. (I know what you are thinking … yes, this family has had more than their fair share of Murphy’s Law of what can go wrong will go wrong!) She’ll be having three to four different procedures to correct issues with her sinuses and deviated septum. This will take Holly out of work and away from being primary caregiver for Patsy for at least a week if not for more. Our Volunteer Coordinator, Teresa Simmons, has worked incredibly hard to be sure we have coverage. We still have some evening and weekend times left so if you are interested do contact her!
Now I know “Hospice” is a word that will make many of you very sad. As you probably know by now, ALS has no cure. We’ve all known that this horrible disease will one day take our Patsy from us. The average patient only lives 3 – 5 years after diagnosis. I personally didn’t know what hospice really was until recently so I thought I’d give you a little more information. I’ve learned the biggest difference is in the treatment philosophy. Home Care is about caring for a patient with stable or improving health. Patsy did improve a bit because of the medical care provided through her v-pap machine (helps with breathing at night so getting more oxygen) and her feeding tube. To be on Hospice a patient has to show a steady decline in health / function. Hospice is about keeping a terminally ill patient comfortable. You’ll often hear the term “palliative care” along with “hospice”, this is because they go hand in hand. Here’s some great information from Heartland Home Care & Hospice (Patsy’s care providers out of Red Oak, IA):
What is palliative care? Palliative care supports patients and families.
Palliative care, or comfort care, helps improve quality of life and relieve symptoms for people who have serious, chronic medical illnesses. This type of care focuses on decreasing pain and suffering by providing comfort, support and treatments to help relieve symptoms. Palliative care uses a team approach that involves doctors, family, social services and other health care professionals.
Hospice care, which can be an important part of palliative care, involves helping terminally ill people and their families during the last period of life.
According to the American Medical Association, palliative care services may include:
•Managing pain by finding the source and relieving it.
•Managing symptoms by relieving problems such as nausea, weakness, bowel and bladder problems, confusion, fatigue, and difficulty breathing.
•Supporting the person emotionally and spiritually.
•Changing the environment to make the person more comfortable. This can include elements such as lighting and music and activities such as reading aloud.
•Educating the family about the illness, and teaching them how to give medications and recognize symptoms that might require immediate medical attention.
•Providing home support services, such as transportation, shopping and making meals.
•Providing support to the caregiver through respite care.
•Helping with financial planning.
Providing this care often requires a team of health professionals. Typical members of this team include:
•Home health aides.
•Physical and occupational therapists.
Patsy will not see a huge difference at first as she switches from Home Care to Hospice. She has already been receiving visits three times a week from Ashley, her Home Care Aide. Ashley helps Patsy bathe and works with her on range of motion exercises / stretches. She will also continue to see Celeste, her Registered Nurse. Both are beloved by the family! And of course Curtis tries to feed them every time they are here! We already have the durable medical equipment:
Shower Chair: This is a plastic chair that has a toilet like seat & wheels. It allows Patsy to be rolled into the shower & the caregiver to reach the majority of her skin to be able to really get her clean.
Hospital Bed: This has been a great help as Patsy cannot sit up on her own any longer. The bed lifts on the top to raise her up into a sitting position. The lower half of the bed also raises up to support the patient’s knees – allowing her to be more comfortable since she is forced to sleep on her back and cannot move or adjust herself during the night. The entire bed also goes up and down, which helps the caregiver depending on what task they are performing.
Wheelchair: This is an impressive piece of machinery! Patsy is able to control it with a joystick with her one arm / hand that still has mobility. Not only can she move around but also she can adjust her position even to the point of lying flat in the chair. It is sturdy enough that she can drive it around outside so now that the weather is nice she’s getting out a bit. We hope to have the cement drive put in shortly to make this even easier.
V-Pap Machine: This is a machine where there is a mask that goes over Patsy’s mouth & nose when she sleeps. It pushes air into her lungs all night. It’s no fun to sleep in – not exactly comfortable … but she can tell the difference in how she feels the next day. She has much more energy because of the increased level of oxygen she gets with the machine.
Sit/Stand Machine: This machine lifts Patsy from a seated position into a standing position. It’s a little hard to explain … Basically there is a harness that we put around her waist and then hook it to the machine. This lifts her under her arms so that she is standing on the machine. It has wheels so the caregiver is then able to move the machine & Patsy with it to the wheelchair and then lower it to sit her back down. As her mobility has decreased this machine has truly been a blessing for the caregivers and for Patsy. It makes it so much easier & safer to move her.
Portable Commode: This is a light weight portable chair with a toilet seat. That way every time Patsy has to go we don’t have to maneuver her into the small bathroom. We can use the Sit/Stand Machine and transfer her to the commode – bringing it to her vs. her to it. Patsy now has a urinary catheter so we only use this for bowel movements.
Eye Gaze Machine: This is a tablet computer that is designed to allow the patient to use their eyes to control it. We are just learning it now but it will allow Patsy to not only get on-line and do everything she would on a normal computer but also she can choose words & phrases to have the machine speak for her! Just by using her eyes! At this point she can still talk, though it is much slower and slurred so we know we need to be ready to use this machine soon. Like all new technology it is a little daunting but we’ll get there!
Unfortunately transitioning to Hospice doesn’t allow us more in-home care for Patsy. In case of an emergency they do allow for 5 days of in-patient respite care … but as you know our goal is to keep Patsy at home for the remainder of her time with us. So we continue to rely heavily on volunteer caregivers. We have supplemented the volunteers with four paid caregivers (three CNAs and an RN), but each have families & other jobs so their hours are limited. And with one day of paid care costing up to $180 we try to save money by using volunteers first. So whenever someone asks “what can I do to help?” my first answer is VOLUNTEER! But there are many ways you can help & support the Martins:
1. Volunteer to be a caregiver! We have morning (8AM – 12PM), afternoon (12PM – 5PM) and evening (5PM – 8PM) shifts every day. We are now also including shifts on the weekends. If you are not comfortable coming alone you can pair up. We can teach you all you need to know and usually there is someone around to answer any questions. Ed still can’t use his one arm because of his shoulder surgery but with farming he’s in and out. Curtis works nights so is usually there for a while in the morning taking care of all of the meals until he heads off to workaround noon. Holly comes home from work between 5PM and 6PM. The extra set of hands for these three is crucial. Plus remember, Patsy can still tell you what she wants / needs! Contact firstname.lastname@example.org to learn more!
2. If you aren’t in the area / can’t volunteer to be a caregiver then please donate! The out of pocket costs for the Martins remain significant. While the money we’ve raised has helped it has only made a dent in the total of their out of pocket costs. You’d be shocked what insurance and Medicare don’t cover. Even a small amount is a big help! You can donate on-line, send a check or drop your donation off at the bank in Shenandoah. Details atwww.youcaring.com/Peace_of_Mind_for_Patsy.
3. Send letters! Patsy loves to get the mail! What do you say? Just tell her what is going on in your life. Don’t dwell on the disease … she gets the “I’m so sorry”, “you are so strong”, etc. constantly so just having a normal letteris a joy and a distraction from her struggles. Right now as she’s learning to use her eye gaze machine sending a letter through the US post is easiest as her caregiver can open & hold up for her to read. Remember, Patsy’s mind is not at all affected by the disease. She’s as sharp as ever, she just can’t communicate or move as she once did.
4. Schedule a time to come out and visit her! We have to limit visitors simply because Patsy gets tired very fast but that does not mean that she doesn’t want them! Just call the house and see what would be a good time /day. Be aware that your visit probably needs to be limited to an hour or so and that we’d have to work around the times of the day that are easiest for Patsy.
5. Gifts: While treats and food are a wonderful gesture know we have a full on Chef in Curtis who is always prepared to feed an army! Ed is a diabetic so can’t have many of the goodies people bring. Holly is allergic to gluten so also has to watch it. And Patsy is now on all soft foods soeverything has to be blended. If you’d like to make a gesture of a gift vs. a donation here’s some ideas:
a. HyVee or Walmart Gift Cards
b. Massage gift certificate (Not only is it good for her but Patsy also loves them!
Rick will come out to the house! 712.621.4554)
c. Amazon.com gift card (Patsy reads a lot on her kindle)
d. Send cards with old pictures, funny stories, and inspirational quotes – the little things are what touch Patsy the most.
And of course one of the most important things you can do is just to be present. As your busy days go by keep the Martins in your prayers and do not hesitate to reach out!