16 Months of Upswings and Downturns

Every stage of this disease is temporary. What doesn't work well at one stage may work well the next. Keep an open mind, open heart, and positive attitude and the best alternatives will present themselves as you go along. Keep the faith! I'm going into my 3rd year of crisis mode, now in the final stages. Everything happens for a reason when you are able to look back on it.

In March 2013, my Gary fell and fractured his left hip and pelvis. After they decided they would not do surgery, he was transferred to a rehab facility...the only one that would take him...he was there for 10 days. They made an error when recording his medications from the hospital and lowered the dose of his Exelon patch by 2/3, from 13.3mg/day down to 4.6mg/day, left him on his own for hydration, dropped trays in front of him to feed himself when he dropped from solid food to purée in 5 days. I noticed the decline, caught and had them correct the medication error, found 2 awful bedsores on his heels and called Hospice. They accepted him immediately, transferred him back to the memory care facility who knew him, and he was touch and go for 2 weeks.  

There is always hope! After that horrid stay, I never thought Gary would walk again, or be off a catheter, but both happened. It is truly amazing what the elderly can bounce back from. That first facility was responsible for nearly killing him, but he recovered, was off Hospice in just over 90 days, and was able to be rehabbed to functionally participate in his care, which enabled us to bring him home after I had our bathroom remodeled to be fully accessible with a roll-in shower. We enjoyed 7 months of upswing after that horrible trauma in that facility, back up to walking on a cane with assistance and feeding himself almost independently. That was such a wonderful honeymoon of borrowed time for him, me, and our 2 adult daughters. It was quite a journey and it was so awful that much of his pain and suffering could definitely have been avoided.  

We kept him home for just over 9 months  Our current situation is Gary was hospitalized for infections in November. He was home from the hospital in time for Thanksgiving, but then began his current spiral of decline with rapid weight loss and signs of brain damage from low oxygen levels they missed in that November Hospital stay. He became incontinent over about 3 weeks and has been fully bedridden since that hospital stay. He's now been on Hospice since December 4 and we have confirmed weight loss of over 60 pounds.

Last month, mid June, he started showing signs he didn't know where he was anymore. At that point, me and my adult daughters came to the conclusion that his quality of life would be the same whether he was home or not, and we were so exhausted. We'd been running our own nursing facility, staffing it with us, plus a 40 hour per week caregiver, and Hospice had provided nursing aids for bathing.  At the point we moved him, I know he wouldn't have wanted to be a burden, and he likely would have scolded us for keeping on as long as we had. 

This move to the Veteran's Home is the first time it's made sense to utilize Veteran's services for his care. They are working so hard to understand his needs and allow us to be daughters and a wife again, vs. full-time caregivers. The transition has been very emotional and a test of trust after we had issues with so many bad facility experiences, but I feel this may work out now. So hard to get over skepticism and the hurdle of the lack of LBD knowledge, but he has the full spectrum of symptoms and is a wonderful learning experience for their staff. They are literally blown away, as we used to be, that he goes for days in a coma sleep, then wakes up and is quite lucid and active for a day when they thought he would never respond again. It truly is amazing when he is able to do that, but the rebounds are getting farther apart and shorter in duration. He will serve to educate for others who come after him. Of course, upon admission we had a very hard time getting them to believe he needed bed rails and mats on the floor for bed safety. 5 days later they thanked me for the precautions. 

The miracle is he's still here. No one has expected him to hold on this long. though he doesn't know where he is now, he still knows who we are and sometimes recalls our visits. Every day is a miracle and we are grateful for any spec of a lucid moment. Bless his heart as he continues on in these final days and weeks.

I had posted this on a Carer support site on Facebook and realized it would be a useful update and synopsis for others. I just hope our story, and this Blog, is helpful to many.

Hallucination Note

One of the first hallucinations I caught my husband in was of our oldest daughter standing next to him and she lived 1,500 miles from us at the time. Now that he is end-stage, he has spoken of seeing his mother, but Hospice tells me that is common as the end nears, so in my mind is different from the earlier hallucinations...most of which were miniature people.

Guilt

I can tell others I communicate with in online support groups to not feel guilt but then it is actually a mutual effort for me to also work on having no guilt because I just put my husband in a home on June 30 and am adjusting, myself. The first two weeks were total depression and loss of his presence. Last week was a little better. This week the facility is getting a much better grasp on his care and pain management, which is helping me feel less guilty and get a grip on the fact that his quality of life will be the same in either place now, because he doesn't even ask about home at all. 

It only took 4 weeks for a cognitive decline from June 4 when he was asking to return home less than 12 hours after admission for a Hospice inpatient respite stay; and when he was admitted to the nursing facility and hasn't even asked about home. RAPID and drastic change. For me, that's the only part that makes this a bit easier...that he isn't constantly begging to come back home, and yet that decline is depressing all by itself.

He Doesn't Know I'm Here

I came at 1 p.m. today to see my husband. He was awake for about 10 minutes. It's almost 5 p.m. now and nothing. Not even able to rouse him for a sip of water. So hard to believe he is this far down.

Advocating for In-Home Assistance for a Loved One with Dementia/LBD

Let's be realistic...anyone with any form of dementia can use in-home assistance as soon as possible. Here are a few ideas to help you get the assistance started when you are on Medicare.  

If your loved one isn't currently in a state of definite decline, I would ask your doctor about referring you to Home Health for help. If they don't require skilled nursing assistance, your doctor can ask for Home Health to provide just the services they would respond best to. If they have any swallowing or speech changes, see if your doctor would recommend a speech evaluation. If they are having mobility challenges, a physical therapy evaluation can be ordered. If problems with feeding themselves, dressing or other grooming or coordination activities such as writing and dexterity, an occupational therapy evaluation can be ordered.  

Don't be surprised if you find challenges with getting therapists to agree to work with dementia, because there are a lot of therapists out there who seem to view dementia patients as unsalvagable, which is very sad. If that is the case, advocate by making phone calls to other agencies and interviewing their views on therapies until you find an agency who is supportive.The consequences of not fighting to show improvement for Home Health results in your loved one being considered "stable", which then disqualifies you for assistance. Throughout my husband's care, I wouldn't allow Home Health to drop us because I would call attention to every little improvement I could see to help them document it for Medicare coverage. I also became very familiar with the administrator at the Home Health we used, and I was able to press for care much longer than we would have gotten it otherwise. If a therapist gave up on him, I would point out how much progress he'd made, discuss the potential for greater progress, and they would ask other, more dementia-tolerant therapists on their staff to treat my husband so he would be allowed every opportunity to continue to improve.

On the flip side of Medicare Home Health certification requirements, Hospice can only come into play if your loved one shows decline and a doctor certifies they have less than 6 months. Hospice care is the "cadillac" of care when you are out of treatment options for your terminal illness. It can be difficult to come to grips with a transition to Hospice, but their palliative care is an absolute godsend for medical assistance for both loved one and caregiver.  Because I advocated to call attention to status improvements for Home Health, we were ultimately able to transition straight from Home Health into Hospice services with no interruption in the nursing support we desperately needed. Now I advocate by noting every decline symptom with Hospice to assist with their recertifications with Medicare.

It's a battle, but a battle worth fighting. Being a strong advocate is mandatory at EVERY stage of this disease, whether fighting to stay on Home Health by calling attention to improvement...fighting for proper care and POA communication in a hospital setting...pointing out every tiny bit of decline for a Hospice...or advocating for oxygen flow continuation and pain management continuation in my husband's current setting, with Hospice at my side.

Medicare Hospice and Home Health Discussion

On Hospice, the initial benefit period is 90 days, then after that benefit periods are only 60 days long. If you are caring for your loved one at home, you are qualified for 5 days of respite in each benefit period. I have always selected a Hospice provider who has their own inpatient units, and that's the only place I would allow them to take our Gary for his respite stays. No outside facilities were allowed because of repeated bad care experiences.

To be qualified for Hospice, you must have a life expectancy of less than 6 months, and must continue to show decline each benefit period to be recertified on Hospice. If you stabilize, their service will be discontinued, no matter that you sill have a terminal disease. You must have nearly all 7 symptoms of end-stage dementia on the FAST scale to be Hospice qualified with dementia as your only terminal diagnosis. Multiple diagnoses can be used, but the primary diagnosis dictates which medications Hospice will pay for and which will be excluded. The horror is if services start, then you stabilize at some point in your decline and they kick you off, still terminal, but now stable, which makes you ineligible for Hospice services. When you are stable, you are also not qualified for Home Health, because in that situation, you must be improving to receive those benefits. Many dementia patients and carers get caught in that awful limbo of stability with no support, which means no in-home skilled care and no respite unless all paid for out-of-pocket despite having a terminal illness and needing a medical transport to get to appointments. Our system desperately needs an overhaul!! LBD is SUCH a difficult primary Hospice diagnosis because of the cognitive and behavioral fluctuations.

We were kicked off Hospice last July and had to fight for rehab so Gary would be showing improvement for us to have Home Health help at home. I was able to advocate enough to keep it going until he had to be hospitalized in November for a sudden bout of infections that started at Adult Day Care. He qualified for Hospice again starting in December, and we kept noting and pointing out all signs of decline to keep Hospice involved in his care. Hospice would miss many signs if we don't advocate for him. It is exhausting. You leave Hospice and the basic needs, which would keep your loved one maintaining a comfortable stability are kept out of your reach unless you pay on your own because Medicare has stacked the red tape so high to get them. The fight for a hospital bed with an air mattress for bed sore prevention is monumental and nearly insurmountable without multiple letters of explanation from doctors and therapists. An oxygen concentrator requires a sustained reading below 88% blood oxygen for several minutes within a 24 hour period even if you had a lifetime certification for it before Hospice admission. Medicare considers you to be "recovered' if you are kicked off Hospice services, so you must scratch your way back to get back items you had proven were needed in the past! Beyond ridiculous!!

The attitude of Hospice when kicking you off is, "This is a good thing because they are doing better!" No, it's hell for the carer and patient because you have to fight so hard for basic needs and to keep them out of the hospitals that will kill them with their medication adjustments upon admission, and they aren't ever getting "better"! It is all decline, just sometimes imperceptible to untrained and inexperienced medical personnel who don't listen to advocates. This has been the most stressful, exhausting experience of my life and I have become an impatient, and often sarcastic, advocate because of all the continuous battles I've been forced to engage in. Still ongoing even though we're end-stage. Common sense and simple care logic are NOT empathetic medical traits, they have to be taught over and over again, in every single setting, and with every new medical encounter. For example, urine retention is ALWAYS met with a permanent or straight catheter intervention. Straight caths cause infections more frequently than retention, and a permanent catheter WILL BE PULLED OUT by a dementia patient. The medical community doesn't think in terms of individual circumstances and past experiences, and they love to try and trump the advocate. This constant battle has become my definition of absolute insanity!