Day 20 - 3 Hours of Quality Time and Companionship

Spent 3 hours with Gary after work today. At dinner he passed on pork stir fry for a couple small slivers of Domino's pizza, and seemed to enjoy them. We watched a little Thursday Night Football, then when I left he had fallen asleep. Came home and caught up on American Horror Story and then watched the Scandal fall finale with Sami. Great wrap up to a good day.

Thankful for Good Friends Posting Helpful Research - Nov 19

So thankful for good friends who try to encourage, and prompt discussions about needed changes to our Medicare hospice benefits from end-of-life patients. This article was posted on November 17 by the National Hospice and Palliative Care Organization. 

More Research Validates the Benefits of Hospice; What Will It Take to Change End-of-Life Care in America?

This research is promising for cancer patients, however, dementia continues to be a constant challenge with CMS, and hospice follows suit. I wonder how long until lawsuits come up for CMS' discrimination against dementia patients? We are unbelievably constantly at risk of being kicked off because he is dementia even in his current state of being extremely underweight and not improving...but simply being momentarily stable. Also...medications that have been covered for a year, that assist with symptoms directly related to his decline, are suddenly being excluded, meaning we will have to pay for them outside Hospice, on Gary's Medicare Part D drug coverage. Unbelievable.

The other piece that plagues us under the Hospice umbrella is that NO meds have been specifically proven to help for Lewy Body Dementia, so all are at risk of being experimented with for gradual dose reduction at any time, even in his fragile state. There is no hospice exception for these reductions. So unfair. If you can prove they have benefit in your case and you are on hospice, there should be exceptions for hospice patients...instead, reductions must be tried simply because nothing that happened prior to admission in your current facility counts. This is so unjust!

Day 18 - A Peaceful Evening after an Agitated Day

Happy Tuesday. Good day at work, then off to see Gary, who was very deeply asleep after an apparently highly anxious day. Sat with him for a while, visited with the staff, then left to go home. Glad he was so relaxed since the last few days we've seen him have been semi-anxious. Good to see him resting peacefully.

Changing it up with a New Work Schedule Allows Earlier SNF Visits - Nov 17

It's a Monday...what can I say. I'm very fortunate to be allowed to telecommute in my job 95% of the time, but there are challenges 6 months out of the year when Nevada changes to daylight savings time and Arizona doesn't. So, I have tried something new this year and am still enjoying my new 7-4 schedule to stay in sync with my Arizona co-workers since the time change. Snagging prime parking spaces and missing all the traffic before all the Vegas employees come in isn't shabby, either...plus having more evening left after the time change doesn't suck. Feels like a crazy world with my phone, work laptop and Jeep clock in AZ and the rest of my life in NV, but crazily, it's kind of all settling in by week 3. This is also very helpful to get to see Gary earlier in the evenings!

Nov 16 - Caregiver Recharge

Took a full day off to stay home all day today to help myself feel better grounded, and felt completely guilty for it. I did get caught up on a lot of things I needed to do around the house, though...like have clean clothes, cook a real brunch and dinner for me and Sami, plus hospice's art therapist visited for the first time in a month and started us on a self-designed sewing/needlepoint project. Never done anything like this before...latchhook is the closest I've done. This will be interesting!

A Plea for Input from my Support Group

I posted this in my online support group on my depressed Sunday off from visiting my husband and received so much support and empathy from my caregiving friends:

Sorry for the length of this: I don't even know how to express this because it feels awful. My two adult daughters and I have been standing tirelessly by my husband throughout his illness, which became severe starting early 2012 and has been a rapid, evil decline. He was separated from us for 9 months in 2013 because of injuries/recoveries from falls. We were desperate to get him home then...I gutted and remodeled our bathroom so he could come home, and we were successful with his care at home for 9 months from Sept '13 through June '14. 

His care became very intense, so we moved him to SNF 6/30. We've been visiting him regularly from July 'til now, but suddenly it seems we have all reached a burn-out point. Our oldest daughter (due to a new relationship) now only goes to see him once a week. I go only every-other day at best over the past couple weeks. Our youngest, 19 and a dedicated nursing student, only gets there every couple days, also. 

We love him and miss the old him. He's well cared for in his memory care unit, but bedridden and miserable, minutes from bedsores, in and out of sleep, in and out of agitation and grouchiness, and personally, I'm almost feeling after 3 years of advocacy, there's nothing left for me to do for him. I'm broken. I don't want to be shutting down, but I feel I am. I need time to myself, I need to clean my house, I need to have a life, too! I know I can't be the only one to reach this point, can I? I feel worse, though, that I and his daughters seem to all be "moving on" nearly at the same time! I'm so sad, I just want to sleep all the time and I feel so very alone... 

Among the responses I received from many supportive and empathetic LBD sufferers and caregivers was this helpful link:

Who Cares For The Caregiver?

 

His pain, agitation and anxiety are mine. There is no separation. We are the same person.

Time With our Daughers Plus a Nice Visit on Day 15

Saturday! My favorite day of the week! Met our oldest daughter and had a wonderful brunch at Brio, then shopped together for a bit (Old Navy). Had a long afternoon/evening visit with Gary, then welcomed our youngest college sophomore home as a fully initiated Alpha Gamma Delta girl! A fun relaxing weekend day!

Nov 10 - Divorce Anulled Overnight

Was happy to get to Gary just before dinner tonight and find out that we are happily married again. WHEW! I arrived Sunday afternoon and discovered I was his ex-wife and we had been divorced for quite some time because I had "given up" on him a long time ago. Apparently all our reassurances that wasn't true helped, because our divorce was annulled overnight.

Nov 9 - Safely Home after my Respite Weekend

Grateful for a safe drive home...and thanks to my oldest daughter and her boyfriend for keeping our baby girl company on Saturday night, and for giving her a great send-off for her CRUSH sorority/fraternity prom while I took a short break in St. George with my sister! Also thankful for a great afternoon meeting today, working through strategic medical thinking with Gary's hospice reflexologist. Now home, relaxing, unpacking and getting ready for my week...PUSH...only 2 weeks 'til Thanksgiving break!!

Another Setback in Support - Medicare Dictating Changes in Hospice Medication Coverages

Hospice contacted me Friday and notified me that my husband's Albuterol Sulfate for his nebulizer breathing treatments 2x/day, and his Lactulose for assistance with bowel movements (which he only has every 4-7 days WITH Lactulose included in his constipation regimen) are both no longer covered under the Medicare Hospice changes! At least I was notified in time to plan for his 2015 Part D drug plan during open enrollment, thank goodness. But seriously...both are excluded now after 11 months of them being included, because Medicare is becoming so strict about Hospice medications ONLY being related 100% to the primary terminal diagnosis. So his Aspiration and COPD complications get left behind along with his constipation complications that have led to an obstruction WITH Lactulose while on Hospice...UNFAIR and ridiculously short-sighted!! Tripping over dollars to save dimes...so typical!!

Calling and writing our congressional representatives would contribute to a potential long-term solution, but in the short term, as advocates, we need to point out every tiny sign of decline that could help hospices recognize and keep within the stricter limitations of the changing guidelines.

Nov 7 & 8 - A Wonderful Break to St. George/Zion National Park with my Sister!

Safe travels up to St. George to visit my sister, complete with an afternoon jaunt to Zion National Park for lunch and a tour. Now off to dinner on the town. A much needed break from my routine!

Day 5 - Catching Up on Overdue Auto Maintenance

Nov 5 - Day 5 became car day. Oil changed, tires rotated and annoying tire inflation light OFF from the recent rapid temperature drop. I HATE that... Priced tires for my youngest daughter's car and they will be installed on Saturday morning. Feels good and I am grateful to have car maintenance issues off my list for a brief moment.

Holding Hands - Day 4

Tonight I am grateful for a productive day at work, and for my visit with Gary this evening at the nursing facility. Though he was very quiet and sleepy, and didn't eat much, he still sought out my hand to hold when I told him I loved him and missed him at home. Priceless.

Day 3 - Progress With Agitation Relief

Thankful for a couple milestones today on the challenging road of skilled nursing /hospice politics:

The first is the facilities documentation was finally solid enough that we got the attention of the hospice nurse practitioner that Gary's been having more frequent and intense episodes of agitation that have required doses of Klonopin (clonazepam) to relieve. This is a result of me and my family pressing for his safety and comfort with the nursing facility staff, enough to get their attention and document his agitation and restlessness to help keep him comfortable.

Second milestone is, not only did I receive a call from the hospice nurse practitioner asking my consent to increase Gary's Klonopin availability to 3x/day from 1x/day, but 45 minutes later, the facility also called me to double-check they had my consent. Breakthrough monitoring on behalf of both entities!

So thankful for the progress we've made!

Thankful for Our Empathetic Hospice Volunteer/Friend on Day 2

Thankful for a good visit with Gary today, and for the wonderful, empathetic conversation with Gary's volunteer reflexology therapist from hospice. We are so thankful she found Gary in the inpatient unit in March, continued to treat him in our home, and now works with him at the Veterans Home. She has helped him so very much with the relaxing therapy regimen she provides him every Sunday. She also helps me tremendously with her understanding of what we're experiencing since her husband was also afflicted with Lewy Body Dementia. She is a ray of light for us.

Day 1 of 30 Days of Thankfulness 2014

Last year throughout November, I posted a personal daily message of gratitude to friends and family. This year, I carry on that tradition, and am thankful to also share these messages with you.

Day 1 of November Thankfulness: Sincere thanks to our friends and family. For those who aren't certain how to help us get through our difficult times with Gary...just check in on us every once in a while to make sure we're okay. It's so wonderful knowing you're still there, available to listen and help when we might need you. Thanks for sticking with us through this long illness and our trials.