Help

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.

Weight Loss

Last summer, Mom experienced a significant decline and it got me a little bit worried. With every rapid decline, I can't help but to wonder if this is the turn that is going to lead us to that final stage. I could write all the details of what transpired, about our evaluation for hospice and home health care, but it's a long and exhausting story. To sum it all up in a nutshell, some members of my support group suggested that we get her a hospice evaluation claiming that their loved one received hospice much sooner than the phase my mom was in at that time. I kind of got my hopes up; not because I wanted hospice necessarily but because I thought we might actually be able to get some (free) outside help. Well, after the evaluation, it was determined that she was not eligible for hospice yet, even though she did fit some of the criteria. One of the biggest factors, they told me, was weight loss. Significant weight loss indicates that their eating habits are changing; at the end stages of the disease, weight loss will occur, signaling the advancement of the disease.

This left me a little confused. For one thing, in everything I've read up about semantic dementia, it says that weight gain is very common in the late stages of the disease. Mom was at her all time heaviest weight, weighing in at 234 pounds. Her average weight (at nearly 5'8") has always been somewhere between 150-160 lbs. Nevertheless, Mom's eating habits were changing. Some days she'd eat hardly anything at all; other days she would devour 6 or 7 pb&j sandwiches. She was still drinking Ensure though, which is packed full of calories. The hospice nurse recommended that we keep track of her weight and her eating, stating that we could call back for a reevaluation at any time, and especially if we could show changes in her eating patterns and weight loss. So, for the next few months, we kept a log of the times and the quantities of Mom's meals.

After a couple months of doing this, we didn't really see much of a decline (especially in weight) so we decided to quit tracking for a while. The last time I weighed her was early fall and not much had changed. BUT, since that time, Mom has quit drinking her Ensures. Dad has left them out for her on the counter and has even tried personally giving them to her, but she won't drink them. She will only drink water from a plastic water bottle and she is now on a 100% pb&j sandwich diet. We generally only make 1/4 of a sandwich for her at a time because so much of the sandwich ended up going to waste. She was taking one or two bites and disposing of the rest and she will not eat leftovers. She has to watch it being made if she's going to eat it!

I've noticed her slimming down a little bit over the past few months, so today I decided that I should get her on the scale-just to note the changes. Our caregiver was at the house with me when I showered her so she helped me to get Mom on the scale afterwards. This is no easy feat; Danielle had to pick up her feet and move them onto the scale while I held onto her upper body. I was shocked when I read the scale. In fact, we put her back on two more times just so I could make sure that we read the number right and that it wasn't a mistake. All 3 times, her weight came in right around 183 pounds; 50 pounds less than she weighed in the fall!

I am understanding more now about the weight gain/weight loss issue in the last phases of the disease. While those with semantic dementia do tend to gain weight in the later stages of the disease, there is an order to that very final stage that I am finally starting to comprehend. As one enters into the very last stage, there comes a disconnect between body and mind. The body forgets how to eat, how to swallow, how to walk, how to talk, how to hold in human waste. We've seen some of these changes already, but we still have a ways to go. I do think it's time to start tracking her weight again. It's possible we could now get her qualified for hospice, although she could still have a long way to go-there's no way to know for certain how long this phase will last. When she begins to have more trouble with her mobility or complications with infections (pneumonia, UTI's), etc., then I think an evaluation will be in order. Until then, we take it one day at a time.