Qualifying for Hospice Care through Medicare

It has been awhile since I posted. Life has continued on and taking care of my mom and my family has just become so routine that I haven't had much to say. That being said, however, daily life is still an adventure.

We finally arrived at the point that we qualified for hospice care paid by medicare. I called the hospice agency when I was convinced that my mom was in her last days. They were so helpful getting things set up and were, quite honestly, a godsend. My mom rebounded ie. didn't pass away, but the team was in place and we set it up so that I would have help getting her bathed and dressed 3 days a week. Most comforting to me was that I finally had a support team for when the end does come. One of my worries has long been having to call the ambulance, who may or may not, listen to our end of life decisions, and then proceed into a hectic end rather than a peaceful passing with people who know and understand the situation.

My mom doesn't recognize anyone as far as I can tell. Sometimes she will give a greeting of recognition but then she gives that same greeting to complete strangers. I wish all the time that I knew what, if anything, is going on her mind.

The largest measure of her decline in the last 4 months has been weight loss. Regardless of regularly eating, she continues to lose weight. She is barely 100 pounds. She is skeletal. That is one of the most difficult things for me to watch because I am in charge of feeding her. I struggle, all the time, asking myself if there isn't more I could do to prevent her from wasting away. The hospice nurses assure me that it is part of the process, but that is one part that is painful for me to watch. (ok--all of them are painful to watch, but not all of them can be linked to something that I am solely in charge of, such as feeding her.) I can be pretty hard on myself when it comes to accepting that I am doing all that I can/should be doing.

Here is a link to the medicare hospice page. http://www.medicare.gov/coverage/hospice-and-respite-care.html

Wheelchair: Kids loved It; Mom Detested It

As much as my mom detested our suggestions that she might benefit from the occasional use of a wheelchair or a walker, my kids loved having the medical equipment around. The contest for months was who could balance the longest on the back wheels of the wheel chair. My youngest child thought that taking a ride on the walker should be his right. But my mom treated the equipment as a concession to her declining health. We compromised for awhile by taking walks with an empty wheelchair. When her legs got tired, she gladly took respite in the chair.

After one particularly bad seizure, the one that put her in the hospital and then temporarily in a care center, she used the wheelchair often, even around the house. I had her use the wheelchair each week at church simply because her balance was precarious and her energy level unpredictable. After the third week, I was helping her out of the car with the chair waiting for her, and she said, "I am not using that." I put the wheelchair back in the trunk, and she walked into church. Taking medicine and using medical equipment were my mom's sticking points; she hated to be dependent on anything or anyone.

Some of the equipment we found most useful early on were handrails in the bathroom and a raised toilet seat. The walker was never great for us. First my mom refused to use it and then she just lost the mental ability to know how to manipulate it. ie. hold on and move it forward. Shower seat has been great.

Incontinence part 2: The Nitty Gritty

I tried to be discreet in order to maintain my mom's dignity. I felt that she wouldn't want other people to know that she wore briefs or needed help, so I quietly did my job being careful not to talk even too much to my mom about needing to wear briefs. (I learned to call them "briefs" at the care center. "Depends" of course, is a brand name so it doesn't always apply, and there was no way I could call them diapers especially when talking to my mom.) So you can understand my mortification when my three year old looked up at my mom and said, "Grandma, you stink. You need your diaper changed." How could I chastise him? He was right, and we had said it a million times to him. I glanced at my mom to see her reaction; I don't think it even registered. That is how far gone she is at this point.

Now the Nitty Gritty:

When I was bringing mom home from the care center, I asked the CNA how often I should be changing her. She said that a general rule of thumb was every four hours.  I found, however, that just like with a child it varies, and you sort of learn as you go.

I found that it was helpful to keep gloves, perineal cleaners, adult wipes and a barrier cream next to the toilet. The skin can be tender and the cleaning and barrier creams really help.

There are tons of different briefs. I tried several to find what worked best for us. Some of your choice will depend on if accidents are occasional or regular. Also, how do you put them on: lying in a bed, standing or sitting?


This aspect of care taking, as I said before, is huge. For me, it was terribly uncomfortable, at first. As the disease progresses the task grows in magnitude and becomes one of the the more time consuming parts of care giving.  My three year old summed it up when he said, "Mom's [job] is to make it so Grandma doesn't stink." It is not a glamorous job.

Incontinence Part 1: Talking about It

It's an issue no one really wants to talk about. Certainly, no one wishes their loved one to face incontinence issues and no one wants to deal with them.  In fact, I'm guessing that most people who dare click on this post are those who are facing the daunting task of dealing with the caretaker side of incontinence and all the appendages that go with it. And to you people who are there, you don't hesitate reading this at all because quite honestly, as my mother lost her ability to "stay dry", my job grew significantly, and I welcomed tips and suggestions on how to deal with things.

First of all, if my mom weren't suffering from Alzheimer's, I am guessing that this would be a different conversation. If her brain were working, it would not have been left to me to explain that she had a problem that needed to be dealt with. The road to incontinence, in our case, was gradual.  The first issue was that she was not cleaning herself well after going to the bathroom.  How in the world do you say, "Mom, I think you aren't wiping adequately?" and worse yet saying, "Mom, do you need help?" Aaauugghh!!! That was awkward and didn't go well. She was indignant and declared she was capable of taking care of things herself. And I didn't push it because quite honestly, it was not something I wanted to be doing either.  I re-think how that could have been handled better and I still don't know how I could of done it differently.  We continued in status-quo, and I would just sometimes pull her aside and tell her that I could smell something then she would, occasionally, let me help her change.  She didn't need briefs (Depends) at this point at least not often. Only on a rare occasion would she have an accident.

We then had a unexpected shift. My mom had a seizure, the first seizure she's had in her life.  The seizure was bad enough to put her in a hospital and then into a rest home for 6 weeks.  While she was there, she was kept in briefs and was assisted with "toileting".  When I brought her home, we just maintained the routine that had been established. She was relearning to walk, so I had to help her anyway.  That was almost 2 years ago. Although our routine was established at that point, she still, often, expresses dismay that I am helping her with such a private issue.

Medical Directives

If we did one thing right, it was talking to my mom about her wishes regarding end of life medical care. She was very clear about her desires. HOWEVER, that being said, it is not easy to call the shots when it comes to end of life decisions. In our case, my mom had made it clear before the Alzheimer's was ever evident that she did not want us to go to extremes to preserve her life if she had brain damage. She didn't want her life preserved if she were going to be in a severely impaired mental state.  That is easy to say when you are considering something like a car accident that leaves you in a vegetative state in a hospital room sustained by life support machines. Declining mental abilities is a different, difficult to define beast. How far down the Alzheimer road do you go before you reach "severely impaired"? What is "letting a person go" and what is euthanasia?

Along the road to end stage Alzheimer's, there are stages where people are still leading semi-productive, happy lives.

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

The first time that we addressed very specific questions regarding my mom's medical care was after a seizure that put her in the hospital. After 24 hours of her being minimally responsive, the palliative care nurse came to talk to us about how we wished to proceed. The questions were more than the simple "DNR" that you hear about. Some of the questions were:

• Do you want CPR given
• Do you want antibiotics given
• Do you want IVs given
• Do you want a feeding tube

The antibiotics question was particularly difficult for me. I knew that people, in the end, are often taken out by pneumonia even though it can be treated with an antibiotic. But a UTI can also eventually take someone out, as well, and it certainly can be easily treated with an antibiotic. Why was it easier for me to accept pneumonia than something else? It became a time of soul searching and value questioning. It was a time of answering very personal questions.

In addition to assuaging my own concerns, I was also very conscious of making sure that my siblings were on board with the decisions. Even though it wasn't necessary legally to have everyone concur with the directive I was going to sign, I wanted to be in agreement with my siblings. After all, our relationships would continue after Mom's death, and I felt harmony in the end of life decisions would lead to harmony after Mom's death.

My mom recovered, somewhat, from the seizure, and as Alzheimer's has taken her from us more and more some of the angst involved in end of life decisions has lessened, but the burden of making those decisions remains. You are making those decisions for someone you love, and despite my mom being a shell of the person she was, she is still my mom. Watching this mean disease hurts. Contemplating her death hurts, too.

Aricept: the first try with meds

Aside from vitamins, my mother has few medications and has never taken any medications on a regular basis, simply because of her good health. Although she has always believed that medicine can be helpful, she also saw medicine as something that other people need--not her.  So after our first meeting with the neurologist, where he suggested she begin taking Aricept, she could not grasp that taking this medicine was going to be a long-term, most likely, a lifetime regimen. She wanted a pill that she could take and be cured. Admittedly, the Alzheimer's was already starting to play with her ability to reason, so just getting her to regularly take the medicine was challenging, but we made it through the first three months on the beginning dosage.

After 3 months on 5 mg of Aricept, she felt that she was making progress. I didn't see it, and I made the colossal mistake of sharing my feelings with her and the doctor at her follow up appointment. He said that he actually didn't expect to see much change as that dosage is usually just a starter to see if she could tolerate the medicine and that we would next move to 10 mg. It seemed like a logical step, and I was pleased to start moving forward, but I did not realize at that time how profoundly my observation of non-progress affected my mom. From that time forward she became difficult about taking her medication citing that I didn't think it was making a difference anyway.

The final straw that did us in was one more change in the dosage.  For a few months, the FDA approved the dosage of Aricept to go up to 15 mg. This happened just as my mom was experimenting with the drug. She was tolerating 10 mg well, so we figured "why not try the 15 mg?" Her body did not tolerate it well. She had bowel problems and it made her so uneasy going out of the house that she gave up the medicine all together. Again, because her logic was beginning to be impaired, she couldn't accept that this could be a result of the dosage change. She simply gave up Aricept all together. We couldn't get her to give it another try at any dosage.

Diagnosing the Alzheimers

My mother was in her early 70's when she started expressing distress over forgetting words. Her children attributed the few lost words or forgotten names to the normal aging process. Mom was living on her own, driving, serving in her church and still was more help to us than, perhaps, we were to her. She was a "doer" and though quiet and gentle, a strong force in many lives.

By age 75, she worried enough to start pushing to see a neurologist, so I took her in for testing. She did really well on the initial memory test. It was just a series of fairly simple questions and she did well enough that the doctor didn't seem overly concerned. He ordered blood tests and a CAT scan just in case there was some other physiological reason for the the forgetfulness. My mom actually hoped she had a brain tumor that could just be surgically removed. What she was saying is that she wanted a definable and solvable affliction as opposed to the ugly, ambiguous, unstoppable Alzheimer's disease.

Her doctor also suggested that she start taking Aricept, a drug that has been somewhat successful in slowing the progression of the disease. He explained that they start on a low dosage and if she tolerated it well they would increase the dosage. Meanwhile we would get the tests done and see what could be done. The blood tests came back normal. The CAT scan showed some abnormalities in the brain, but nothing definitive or significant. The notes from the radiologist mentioned the abnormalities but said they could be results of normal aging. My mom was disappointed that there was nothing obviously wrong.

She started taking the medicine. I'll write about that in another post.

About a year later, as my mom insisted that she was getting worse (and I concurring), the doctor ordered a PET scan and a session with a neuro-psychiatrist. The PET scan was read as showing "symptoms that are consistent with Alzheimer's." The neuro-psychiatrist confirmed that there was some forgetfulness but said she was not significantly progressed. I was unimpressed with his observations. It certainly seemed to me that a lot more was going on than he assessed.

And then things started to go down hill fast.