Why does obtaining help have to be so difficult? If there's one thing I've learned from this disease, it is that our medical care system is majorly flawed.
A couple of years ago, Senate (NOT doctors and medical teams) revised Medicare guidelines for receiving hospice with certain diseases. It used to be that if a person diagnosed with dementia reached the point where they were having trouble swallowing and were losing weight due to that (and decreased eating), they could be labeled as "failure to thrive" and receive hospice care. Under new guidelines, Alzheimer's patients can receive hospice under those conditions, but other dementia patients cannot. The problem is, they fail to recognize that dementia is a terminal illness. Anyone who says that it is not is not educated on the disease. When the brain loses function to the point where it cannot tell the body how to swallow or how to process food or how to ward off infections, the consequences are terminal. And such is the way with dementia.
Mom is now into the phase of swallowing difficulties and weight loss. From September to April, she has lost approximately 50 pounds and has lost another 10 pounds since April. Her eating habits have continued to change, even within the past few weeks. The amount that she has been eating has continually decreased. She went from eating whole sandwiches to eating only half and over the past few months we've decreased her portion size to 1/4 sandwich sizes because she wasn't finishing much more than that. Even though she was eating frequently, she was only eating 1/4 portions at a time. Yet, she was finishing them. Over the past few weeks, she has decreased her portion size to mere bites of that quarter-sized sandwich. Sometimes, she will point to the bread and pb&j, watch us make it, and then get up and walk away from the table. Other times, she will get her plate from the cupboard, place it on the table (her signal that she is ready for another sandwich) and walk away. It is as if she is simply going through the routine of doing something (making the sandwich) but is forgetting about the actual eating part of it. We've been tracking her intake of food and water. Last summer she was eating, on average, about 5-7 sandwiches a day, plus drinking 2 ensures and at least 32 oz. of water. Now, she is down to only 16-20 oz. of water a day, no ensures and an average of 2-3 sandwiches per day. When I sit back and reflect on that significant change over the past year and witness the weekly and even daily changes, it leads me to believe that she won't last another year.
In addition to the drastic decrease in eating and weight, swallowing is becoming more and more of an issue. Most times that she drinks her water, she chokes on it, sometimes to the point where she coughs/spits out everything in her mouth. This puts her at risk for aspiration, which leads to pneumonia. She has been choking on her pills over the past month to the point that we've had to eliminate all unnecessary pills (my dad has been giving her lots of vitamins to keep her healthy, but they are too much trouble now to swallow). With her sleep medication, my dad has been crushing it up and slipping it into her nighttime sandwich. She seems to do better swallowing the sandwich than the pills. The trick now is getting her to finish the sandwich!
At the prompting of several people in my online support group, I called and ordered Mom a hospice evaluation (I actually emailed her doctor who sent in the referral). Many people said they were able to receive this service for their loved one by this point and even had them receiving hospice for a year or two! Receiving hospice can be helpful because they pay for all medications, diapers, medical supplies, etc., plus they'd have medical staff come in to check on Mom and help with the bathing. I thought it might be nice to get some extra help and support for my dad. I don't know if it's fortunate or unfortunate that she didn't qualify, but I'm leaning towards unfortunate simply because of the fact that this is a service she would've been able to receive at this point if her diagnosis were Alzheimer's or if they hadn't have changed the guidelines. Basically, the hospice nurse told me at our assessment that they wouldn't be able to step in until Mom becomes non-ambulatory (not walking). The crazy part is that with Mom's specific diagnosis and all other factors (her young age, overall good health), she could very likely be walking up until a few days before she passes away; that's what we're hoping for-we don't want to see her bedridden for months on end. It doesn't matter if she has not eaten or drank in 5 days, they will not step in until she's bedridden.
To put this into perspective, I recently had a conversation with another young lady from my support group whose mother passed away last month. Like my mom, her eating decreased more and more each week until one day, she decided she was done eating altogether. From that day, it took 11 days until she passed on, and she was ambulatory until 2 days prior to her passing. The hospice nurse also told me of a family she had assessed in a similar situation where the patient hadn't eaten in 5 days, yet couldn't qualify for hospice yet because she was still ambulatory. So basically, this isn't a service that we will likely receive until we are days away from death.
To add more insult to injury, we were told that Medicare wants to see us place her before we can tap into anymore services. See, while we didn't qualify for hospice, we did qualify for a home health nurse to come and assess Mom. Things were looking up when the nurse told us Mom would qualify for in-home help! She originally said that Medicare should provide a caregiver to come 3 days a week for several hours to help with mom, including help with the bathing (which I've been handling for the past 2 years). After trying but failing to not get my hopes up, it turned out that she only qualified for bathing help. Still, we were happy and relieved to get some outside help especially with the summer approaching. Unfortunately, that was also too good to be true. Despite the recommendation from the nurse, Medicare only approved 3 weeks of help with the bathing; I'm not sure what the point of that was! On Friday, the nurse came by to reassess and close out Mom's case. Until she ends up with an infection, in the hospital for some reason, or becomes non-ambulatory, our help is done. UNLESS we decide to place her in a facility; if we do that then we'll get extra help. Apparently the people sitting behind the computers are better equipped to tell us where Mom would be better off and will only offer help if we do it their way. No thank you. It's not anybody's business to tell us how to take care of Mom, least of all those who don't know her!
I really don't mind bathing Mom. In fact, I felt a little guilty for those 3 weeks to allow someone else to do it. I feel like it's my job to take care of her. I will admit that it's not always easy or convenient, especially during the summer with the trips we have planned and the time I want to spend with my kids. Through this ordeal, a couple of our caregivers have stepped up and offered to help with the bathing. I still plan to be here when I can to help with that process, but it's nice to have peace of mind in knowing that she'll be taken care of when I'm unable to be here without placing the extra responsibility on my dad-he has enough to worry about! Even though I am extremely frustrated with the lack of care in our system, I feel extremely blessed to have the help that we do have. This isn't going to last forever, so we are all just doing our best to keep Mom happy and healthy for the time she has left with us.