Palliative Care is a newly discovered resource that is supporting my family’s health.
The goal of palliative care is to help people with serious, chronic illnesses stay out of the hospital. It prevents or treats symptoms and side effects of disease and also provides treatment. Palliative care also treats emotional, social, practical, and spiritual problems that illnesses can bring up. When the person feels better in these areas, they have an improved quality of life and they are less likely to need trips to the ER.
Palliative care can be given at the same time as treatments meant to cure or treat the disease. In other words, you can continue to see your regular doctors. However, since a doctor is now coming into your home regularly you might not need to continue with some doctor visits. Palliative care is not hospice.
Kent, Michael and Chad are receiving Palliative Care through Quality Home Health. Palliative Care is proving to be a worthwhile program that takes pressure off of me for monitoring my family. Doctors visit my family members once a month, or more often, if needed. They also have access to a social worker whenever they feel the need.
We are trying to get Andrea on Palliative Care but she is on Medicaid and the company that we work with doesn’t take her Healthy U Medicaid. We have tried to find other palliative care teams that take her insurance. Since Palliative Care is fairly new, the services aren’t uniform with all Home Health Agencies. So far, there is no other Home Health Agency that I have reached out to that comes in to the home like Quality does.
When a patient such as Andrea is considered home-bound they qualify for a lot more services. The definition of home-bound is someone that does occasionally leave their home but the experiences of leaving the home are so exhausting that they can’t be done on a regular basis.
When Andrea leaves home it takes everything out of her and it usually takes the rest of the day to recover. Plus, when Andrea needs to go somewhere either I drive her or her partner Mark drives her. These are some of the situations that classify Andrea as home-bound.
Last week I drove Andrea to an appointment with a new company for a MOCA cognitive assessment. Of course, Andrea tested well. After the results of the assessment were calculated Sarah, the person doing the testing, turned to me (within earshot of Andrea) and said “Andrea is doing well. But now we will be able to chart her decline over the next few months.”
Who talks about the imminent decline of a patient in front of the patient? What nerve and callousness on Sarah’s part. Plus, Andrea won’t decline that rapidly. DM doesn’t work that way. Typically there is some decline but then the patient plateaus for a long time period. I was blown away by the comments that were made in front of Andrea. Andrea and I talked about it after and Andrea said that she was eventually able to shrug it off because it is so common for professionals to be clueless about DM. Andrea feels that she has no choice but to move on.
Everyone in our family got a virus about 6 weeks ago. Chad’s ended up as a sinus infection that needed to be treated with steroids and an antibiotic. After these medications Chad was able to turn the course of the infection that occurred after the virus. Kent’s virus caused him to have lethargy and low oxygen levels. The virus rapidly settled into his lungs and he was diagnosed with pneumonia. He ended up back on oxygen and his X-ray’s showed the ground glass appearance that happens with Covid. Kent was put on steroids and antibiotics, a Z-pac. After the weekend we took him back to the doctor. He wasn’t improving. They started Kent on a different antibiotic, Rocephin (ceftriaxone sodium). After 3 days of injections he finally started improving. After multiple doctor appointments and medications he started improving. At least this time he didn’t end up in the hospital.
After the pneumonia was treated and Kent was improving he woke up in the night and couldn’t keep his balance. He fell, thankfully onto the sofa, which woke me up. Kent couldn’t keep his balance enough to get into the bathroom. After a visit to the toilet with me by his side helping him keep his balance, he successfully got back into bed. This happened again a couple of hours later. In the morning he still couldn’t keep his balance. This time I contacted his Palliative Care doctor. It was nice because she came to the home and I didn’t have to take Kent to the doctor. I wasn’t sure if I could even get him there with his lack of balance.
One of the contributing factors was that Kent was dehydrated. We still aren’t sure what else has been causing his balance issues. He was outside last week and tripped over a solar light and fell onto the cement sidewalk. He ended up pretty beat up and with a black eye. His doctor had him get a CAT scan. There was no internal bleeding, thankfully. Kent is working at staying better hydrated. His goal is 100 oz. of water/fluids a day. He has been successful at that the last few days.
We are still monitoring him closely. He seems to be improving but we have to be very conscientious about his walking. His Palliative Care doctor ordered him some walking sticks, he hasn’t received them yet. Hopefully he will improve and not need them, but if he does, we should have them soon.
Palliative Care made these last episodes with balance easier to manage since the doctor came into the home. It is complicated to get Palliative Care and many companies don’t offer it. Hopefully this continues to change. Keeping our loved ones out of the hospital is a great goal for the insurance. It saves them money. It also saves us money, helps slow down the progression of DM and makes our lives easier.