This is my second open letter. You can read the first here.

So I sent that letter telling of my Mother’s plight (and mine) as an attempt to raise a warning flag, and focus awareness in an area of what I will call ‘aftercare’. There is a black hole into where this issue falls, never to be heard from again, because caregivers and resources are exhausted, and depleted. The caregivers are just glad it’s over. They are also suffering from their own lack of care and must focus on healing themselves, both physically and mentally. The resources, and I mean the nursing homes, associations, and healthcare system are so over booked they cannot stop and think about what is wrong and attempt to create change. Everywhere I turn it’s like they have never dealt with Alzheimer’s disease before. Or, they’ve never heard of this policy or request for documentation.

I also wanted to see who would respond to my letter, and who did not. I’m naming names and naming agencies that are helpful and those who are sorely lacking. If you’ve read anything you know this disease is increasing at an alarming rate and our healthcare system is not prepared for it. Even now without the home caregivers, the system would be overwhelmed and collapse. So you want to ignore the problem and hope it goes away? I won’t let you.

I’ve read the books (Frank Broyles’ being the best), and attended the meetings, and support groups and gone to all the agencies for help and information (The Caring Place in Hot Springs is the best). I know more about Alzheimer’s than I can stomach. I can tell you from someone who is in the middle of the end that I was not prepared for the carelessness, lack of accountability, unethical practices, ignorance, and outright mistakes on the part of the people in charge of even basic needs and requests. It is rare to find anyone who is caring and helpful. The process of, day to day care, health insurance, retirement benefits, prescriptions, Medicaid and other applications, and medical care handled is truly an impossible task. I have been blocked at every stage by policies, incompetence, and paperwork. I have to prove this or prove that. Or, they expect that I am lying, so they aren’t even attempting to help. Some questions are so un-thought out that it doesn’t apply to Alzheimer’s. But you still have to jump through that hoop. It doesn’t make sense, and sure isn’t logical to consider Alzheimer’s care and issues simple, and be callous towards the caregiver or the victim of the disease.

I was also not prepared for the ‘minimal care’ given to patients on Medicaid or even private pay, in nursing homes with ‘memory care’ units. My job for the last 3 years was to take care of my Mother. I had to learn pretty quickly what Alzheimer’s was and what could be done about it. I kept all her doctor’s informed and tried to keep her informed, on track with their advice, healthy and somewhat happy. We had a 3 year plan. The first 6 months were great. She improved dramatically. She went from a weak and bent over ‘old crone’ to a happy, healthy, tall and vibrant senior citizen. Then one of her doctor’s made an off-hand remark about her improvement, stating that she ‘could live another 10 years’. She went to bed and didn’t get out for 2 months. She didn’t want to live with this disease for 10 more years. She got more depressed and gave up. Her reaction threw me for a loop. I had worked hard to get her to a decent level of health and she just quit. I know it’s her right, but I struggled with this and still do. I was angry for 6 months and needed assistance for my own healthcare.

All along this doctor allowed time for me to talk, for which I am forever grateful. He helped me get through my issues with this situation. I’ve had counseling before when my parents were divorcing, and knew the benefits. Like I said, I’ve read the books and knew where this was going. There is no happy ending here. But my job was to take care of my Mother and I took that very seriously. I asked questions and when I didn’t like the answer, or the care she was given, I demanded better. And I got it. Until the end.

Then it went downhill from there. CVS Caremark Pharmacy, who handles AT&T’s Employee Retirement Prescription Benefits, flat out accused me of lying and made me feel like a criminal for asking for her necessary pain and Alzheimer’s meds be filled on a timely basis. Her primary care physician, whom she has had for decades, started working with another company (Renaissance Healthcare in Little Rock) and even though her PCP was great, and the remodeled clinic nice, their attention and care of my Mother was not. Their care and attention was cold and callous, and their excuses, lame.

Not to say I did everything right, either. I argued with my Mother and her healthcare providers about her situation, all along trying to make it better for her. I tried to keep her healthy. I repeated to her over and over ‘stay as healthy as you can now, for as long as you can, because the alternative will be long and painful’. I don’t think she believed me. We had a 3 year plan. That’s what she wanted. Knowing about the Medicaid application process coming in the future, her care providers and I made this plan so she would be ready when the time came for long term nursing home care.

The time came knocking last fall. She got a really bad UTI and noticeably more disoriented and confused. That’s what a UTI does to senior citizens. I didn’t know that. I took her to the emergency room. They were supposed to help her. What they did was give her an antibiotic that is known to make senior citizens ‘crazy’. They asked me if she was sensitive to antibiotics. I didn’t know, but usually not. She was to this one. Even more than before with just the UTI, she was out of her mind. So now my Mother has 3 strikes against her brain: Alzheimer’s, a UTI, and an antibiotic, all working against her. That was a Friday overnight. Her confusion and disorientation did not improve. At 6AM on Sunday morning I saw that she was in the bathroom with the door closed which is not unusual. At 7AM she was still in there, so I knocked on the door. I found her naked from the waist down, clinging to the sink, in a very hot room, and totally out of her mind. I don’t know how long she was in there, but I got her dressed, and out of the hot bathroom. I gave her the morning pills and made breakfast as usual at the kitchen table. She couldn’t find her mouth with the fork.

I dialed 911. They came. They helped with advice. We put her to bed. An hour later when she needed to go to the bathroom, it started all over. More confusion and disorientation. She couldn’t figure out how to go to the bathroom. I called 911 and this time we took her to the emergency room. She was in the hospital 4 days. Then, because she was going to be discharged, I demanded extended care for her and not at home. She went to a wonderful place (Lake Hamilton Health and Rehab) 5 minutes from our home. She was there 6 weeks or more. She had a semi-private room without a roommate right next to the nurse’s station so they could hear and watch her. She had alarms on her bed and wheelchair.

I was there every day. Visiting her, helping her walk, eating a meal with her ($5). She had physical therapy, speech therapy, and occupational therapy almost every day. I brought a big cake on her birthday and everyone, including the staff, got some. She got her hair done there every week, just like always. All along Medicare and her insurance was taking care of all the bills. We also had membership in the ambulance service. I have since gotten bills from all three places: Mercy Hospital, Lifenet Ambulance, and LH Health and Rehab. I was surprised by the bill from the ambulance service. What does paid membership mean exactly? I thought it was insurance for when we needed it. I was surprised by the bill from LH Health and Rehab, too. I was told her Medicare and insurance would pay for the first 90 days 100%.

Again she improved. They took the alarms off her bed and wheelchair. She was using the walker on her own and getting around more. Then they took the walker away from her, and put the alarms back on the bed and wheelchair. Why? I’m still not clear on that. Then she stopped getting better. She ‘plateaued’ as they called it. Not getting better, but not getting worse. So they said they would re-evaluate her in a week and possibly release her a week after that. And that’s what they did. I had to find a nursing home that would take her in a memory care unit. I had 2 choices and flipped a coin. One was slightly ahead because the woman who does my Mother’s hair has two relatives in there. That’s when the real nightmare began.

Admission to Village Springs went smoothly, as I’ve done that before recently with LHHR. I signed a bunch of papers and got her in there. It sounded good enough what she said they did in the memory care unit. I paid for the partial month with the understanding I would be applying for Medicaid for her. We also took her month’s pills to be used from LHHR. Over $13,000 later I am waiting for it to get better. I wish they were as good at taking care of my mother as they are at getting their money. They do that really well. They want their money, regardless of the service, or lack of service. And they add late fees, just like a loan shark. The first problems I had were so alarming I had a meeting with the administrator, head of laundry, head of nursing, and one of her attendants on November 17. The issues in a short list were:

1. Security

I explained our family’s difficult situation and signed a privacy note, not to relate any information about mom being there. They were careless and let that information out to the first person calling about her. Their excuse was ‘it was a new employee’. Think about that for a second. In that statement, they are admitting staff turnovers, poor training, careless staff, and poor management. In the medical fields, privacy issues are just like in the hotel industry, which I am very familiar with. You don’t tell anyone, in person, or on the phone who is there or what their situation is.

2. Clothing missing, not labeled, and wearing other people’s clothes

The first time I saw her wearing other people’s clothes, I freaked. I was told her clothes would be labeled by staff if they weren’t already labeled. Nobody checked. What she was wearing was clearly labeled as someone else’s. When I went to the laundry, it was a mess of disorganization. I couldn’t get through all the hanging items stacked 2 deep to try and find her clothes. During the meeting they found some of her missing clothes. I was told not to leave anything of value with her. The $20 she kept in her purse, in a coin purse, was taken. Along with her perfume.

One hearing aid disappeared and the staff didn’t even know. This was after I found her hearing aids put in backwards, and talked to the administrator. He made a note and put it above her bed. Then the hearing aid case disappeared. And finally the other one disappeared. They blamed mom. So they don’t help her with them, and don’t check the trash before they dump it? Really? Some residents spend their whole day wandering into other rooms and going through other people’s stuff. These are medically necessary items. The last time I met with the former administrator he offered to replace her hearing aids.

3. Dog is not a therapy dog

The dog was afraid of me and mom, and barking and cowering. Every time. Even to the point of barking at me in the front lobby. A scared dog is a dangerous dog. Who set this up? The dog is no longer there.

4. Activities for residents

I don’t see much going on for them to do. The attendants spend their time with minimal care and not helping them maintain the best health possible. I don’t blame the staff first, I blame the management. Understaffed, overworked, over stressed, the staff barely take care of basic care. In my mother’s case she still walks around with other people’s clothes on, bad teeth cleaning, and a full colostomy bag. How fast would you decline if you had this happened to you? If this was how you were taken care of, how would you feel? It’s not like she can come home. She can’t even go to the bathroom on her own, anymore. Her sleep habits are also affected, as is expected, by Alzheimer’s. The most activity she gets is pacing the hallway, and because of that she is labeled ‘a wanderer’. What else is she supposed to do? That’s all she can do by herself. I know her. She is trying to hang on with all she has left.

5. Dining room is an unorganized, difficult to maneuver around, mess

I explained how it should be set up. They moved the tables apart, and keep the food carts out of the room, now. It still needs improvement to be more efficient.

6. Back porch and outside space is poorly maintained

Indoor furniture and chairs were everywhere. Nightstand drawers were on the table for weeks. Old décor still displayed. Dog poop in the grass. Weeds everywhere. I can say the new administrator offered that his wife and I can redo that area in the Spring.

7. And last but not least: I have yet to meet the Doctor in charge

We’ve had appointments, ‘he’s in the building’, but nothing. I met the nurse once, but not the doctor. Makes me worry about her medical care. It’s been months…..

So I worry about her day to day care, her long term care, and what happens after that. I worry about me too. It’s just too much for me to handle. Bills are piling up, insurance issues, and I worry about getting a job that pays all the bills, that will take me away from here. How can I take care of her when I can’t take care of myself? How can I take care of her, and take care of myself at the same time? People and organizations say ‘being a caregiver is the best gift’. I disagree. It’s the worst gift.

Phil Chwalinski
Son, and caregiver

This was originally published on our Facebook page.

About Phil Chwalinski

Phil spent 25 years as a specialist in catering and special events in Arkansas, then Florida, and ending up in California for 11 years. He was a Catering Sales Manager at a hotel and as a Wine Educator at a luxury winery in Napa Valley, CA.

For the last 3 years he has been a full time caregiver for his mother who was diagnosed with Alzheimer's disease, back in Arkansas.

One thing hasn't changed over the years - Phil is also an artist.