Dear Jean,
I am writing partly on behalf of me and my mom, Peggy Wallace regarding our caregiving efforts for my Dad, James W. Wallace who passed in April 2003 from complications due to Alzheimer’s, but also, I believe that this tale needs to be told so people can become aware of the horrific things nursing homes and assisted living homes do in their complete and utter ignorance and ironic forgetting to care for people who suffer from Alzheimer’s “the forgetful disease.” Perhaps, this story will help them avoid such tumultuous times.
My dad exhibited symptoms maybe as early as 1996 but wasn’t diagnosed until 1999. In that time frame though, telemarketers, scammers and lowlifes who prey on the elderly had honed in my dad and scammed him and my mom for nearly $100K sending them to bankruptcy just prior to the most stressful time of my mom’s life, the time she would have no choice but to put my dad in a home. I took a professor’s job nearby so I could help mom with this process as my brother lived in Idaho and sister in Illinois. From 1998 – 2000, it was a daily struggle for my mom to work full time as a nurse (at age 62-64) to repay the bankruptcy debt but also make sure my dad wasn’t harming himself or the house. There were many days/nights when either my mom or I (it was a 45 minute drive for me) had to repair something that he had broken due to not knowing how to work it. For example, he would often clog the toilets and we would have to clean up a basement full of sewage due to the backup caused. Finally, we convinced my mom that to maintain her sanity and health, dad would have to go to a home. As you can imagine, this was a horrible realization for her knowing that she didn’t have the resources to care for him at home and that she would have to endure endless meetings, phone calls etc with attorneys to make sure any assisted care home would not cause her to lose her home.
The first option for my mom was to put him in an assisted living home in 2001. The quality of care in this place was abysmal, aides would scream, yell at patients. My dad who was normally a pleasant man would become unglued when they would scream at him in order to get him to do what they wanted in their time frame rather the other way around. As a result of this, they refused to give him the 30 minutes of healthcare daily so either my mom or I would make the long drive to shower, shave him and make sure he was wearing clean, unsoiled clothes. One instance, I noticed he had a rash on his behind, I asked the nurse for some kind of over-the-counter ointment and she shockingly gave me a tube of prescribed antibiotic from another patient. When I told her I couldn’t use this, she said, “oh don’t worry, we’re using that on everyone.” Can you believe this? He lasted at this first home for about 9 months.
The shame of having to put your husband in a home was bad enough, but my mom or I couldn’t bear to have him stay there much longer, especially since the administrators had no idea the care was so bad. My mom’s next plan was to put him in another assisted care home, but this one required a $6K down payment just to get on the list, when an opening occurred, they called. We moved him to a new place, one that we were very excited about as it appeared that they truly cared for their residents. However, we unknowing found out that my dad became incontinent, a symptom of Alzheimer’s, not sure if it was all the confusion of moving – something that Alzheimer’s patients have a great deal of difficulty with or what, but that this new symptom would prohibit him ever being allowed at this new assisted living home, had they given him a full examination and medical clearance prior – which they did not, but they did make sure they got their $6k prior. Two weeks after this second move, we were notified that he would have to leave as soon as possible since this home was due for a state inspection and as we were told by the administrators, if the inspectors ever saw him relieving himself in the open, they would be shut down. Well, after such a long wait to move him to this place, parting with the $6k deposit to get him there, and now trying to settle in to this new routine, my mom was forced to find a nursing home (this is in the time frame of 1 year) since he no longer met the requirements of assisted living homes. The problem was finding one that was close enough for either of us to get as well as one that provided decent care. We were in the process of choosing a home when we were notified that the second place had already moved him and some of his belongings to a home that was on neither of our lists and was of great hardship for my mom to visit. One day they loaded him up and dropped him off at this nursing home and called us the next day.
As you can imagine, we were furious and sick to our stomachs. On top of it, the administrators told my mom that the $6k deposit she could get partially refunded since he was only there for 3 weeks but that she would have to submit a request in writing. At this time going “postal” on them was not out of the realm of possibilities. I met with the chief administrator and after threatening going to the newspapers about this reckless and quite cruel action of moving my dad without our permission (in hindsight I wish I had gone to the papers), they had a check sent off to my mom later that same day. One of the biggest problems with their haste in moving my dad was that this nursing home did not have a lock down unit for Alzheimer’s patients and my dad soon found himself wondering the grounds – something this home could not allow so within 1 week they sent him to a fourth home (remember, he was moved 3 times in 4 weeks – something that is very difficult on Alzheimer’s patients, not to mention utterly exhausting and emotionally bankrupting on the caregivers). The fourth home was very mediocre in their care, the one positive aspect was that it was not far for my mom to visit him. He arrived in this fourth home around September, 2002. In November 2002 he contracted pneumonia and the drugs he was prescribed by a doctor who never went to physically see him but was tapping Medicaid for kickbacks would not have knocked off a hangnail let alone pneumonia. Subsequently, he never really got rid of the pneumonia.
On the Saturday before Easter, 2003 I had to collect mosquito larvae for a lab so I stopped by and picked my dad up for a drive into the woods. It was a beautiful, sunny spring day in south central PA. We had a very special day, we were out for about 3 hours and I dropped him off around 4pm. On Easter Sunday, he slipped in his bathroom and smacked his head on the door. He developed a fever on Monday, April 21 and they called my mom while she was at work in the early morning and told her about the 102 F fever and she said send him to the hospital immediately. Typical of his treatment throughout this long and grueling period, they sent him alone in an ambulance to the ER. Can you imagine how that was handled, here they have an Alzheimer’s patient who doesn’t know his name, where he is and he is sent to the ER without representation. My mom tried to leave work as soon as she could and got to the hospital about an hour later to find him lying on a gurney by himself in the hallway waiting to be treated. He laid there for 8 hours. I found out later that afternoon. Mom said he was stabilized. I went up to visit him the next day, Tuesday, April 22. The pneumonia was filling up his lungs, but he could communicate. I went home thinking that they would get this under control and he would be back at the home in a few days. I got a call at 2:30am on Thursday from my mom at the hospital telling me to hurry and that he was dying. I spent the next 8 ½ hours there. His breathing was labored, his kidneys were shutting down and the only doctors in the hospital were the ER docs and they refused to visit/examine him because (in their words), “he’s not our patient.” Around 7 am a doctor shows up and tells us his kidney’s are shutting down and that we should think about making him more comfortable as he lay dying. I knew that meant morphine, I just didn’t know that expedited the process. Sadly but not surprisingly, the doctor that was supposedly treating him during his stay at the fourth nursing home (remember she never actually saw him) shows up and examines him, notices the 8” scar on his chest and asks if he had a heart problem. I just shook my head and asked her to leave. My mom was in the hallway as she left and approached her, she began to berate her for giving up, saying we could save him. What a tragedy. Her husband was dying, my dad was dying and she wanted to rob him of the remaining fragment of dignity that had not been robbed of him by this disease.
My dad died at 10:12 am, Thursday, April 24, 2003. Dan was his favorite singer, as you may imagine, Leader of the Band was his favorite song, so we buried him with his favorite 8 Track tape, The Innocent Age. Three months later, my wife and I had tickets to see Dan at the Harrisburg Forum in June 2003. It was the 4th time I saw him and my wife’s second, we had terrible seats which is tough since it’s a small venue but I found out about the concert late and had to take what was left. Dan played wonderfully. But, we had a babysitter conflict and had to leave early. I told my wife that I could not leave before Leader of the Band. This was my last tribute to my dad. Dan played Leader of the Band and as the song was ending, we got up and left. That was the last song I ever heard Dan sing in person. I said to my wife, if I never get a chance to see Dan Fogelberg again, I’m ok knowing that he sang to me and my dad one last time. Dan was diagnosed later that summer I believe and I don’t recall him touring much after that according to his website that I saw some 6 months later in 2004.
Epilogue: Not sure if was the stress, emotional strain, or what, but both my mom and I had experienced some health issues including pre-diabetes. She sold their house last year and moved in with my sister in Chicago and has lost 20 lbs and is doing great, living large and loving life. I am managing my health issues and am doing very well, having just returned from a trip to Tanzania and South Africa with my family. We even climbed halfway up Kilimanjaro and I went cage diving with Great White sharks.
Alzheimer’s is a terrible, cruel and just plain weird disease. I learned a great deal ironically from my dad while he was progressing through to later stages of Alzheimer’s, even though Alzheimer patients may not know later who you are, they have moments of lucidity, the key was being there for him and listening closely. That is what you are doing now for us, what an amazingly selfless and kind thing to do.
This story is for all caregivers, do not give up, fight the good fight but most importantly, take care of yourselves as best you can. Thank you again for giving us a voice and “letting it shine.”
John W
My family had a similar experience with nursing care. My mom was move to 5 different hospitals and 3 “skilled” nursing facilities within 4 months, specifically moved during sundowning times. In the beginning, her pain meds with 25 other Meds created a toxic metabolic encephalophy situation. She had severe back pain as well. 2 MRI’s were done in december 2010. Her shunt which had a magnetic calibration was affected by 2 settings. Her doctor failed to check the settings with cat scans. This caused great confusion. We were finally able to convince the doctors to check and correct the settings. Unfortunately, there were low pressure systems passing through that also had an effect on mom’s shunt settings. Rather than keep her for a couple days for observation. They transferred her to the first “skilled” nursing facility. They gave her so much medication within 48 hours to ” help her sleep” dispite my protesting. She never slept and became difficult to manage. They asked us to find another facility. No one would take her in such an unstabled state, she developed cellulitis from poorly designed and overuse of wheelchairs, so they baker acted her. She was making great improvements from the 3rd hospital, yet began the road of chaos and confusion from over medication. Fortunately, the doctors at the 4 hospital listened to us and removed some meds and adjusted her meeds but added new ones. Mom lost all ability to communicate. After realizing she didn’t belong in geriatric pysch floor, they transferred her to the first available nursing with an open bed. Within 2 weeks, she developed a large blood clot at the next skilled nursing home, from excessive use of poorly constructed wheel chairs identified by my sister, not the nursing staff. Once again , within 5 days, mom was transferred to a new nursing home that happened to be the only one with an open bed. At that point, mom was complete care, couldn’t walk, eat, liitle communication. Mom’s health condition declined so rapidly, recalled hopsice and signed a donot transfer after finding a nursing that truly nursed their patients. They gave her an air mattress and brody chair. No other place would accommodate her needs. We still had to be in constant communication to ensure adequate care. It’s sad that nursing has become so robotic, careless and unable to problem solve patient care. It is sad that these hospitals Nd nursing homes are silencing the greatest generation.
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Thank you for this story. My husband’s mother has Alzheimer’s and is in a nursing home. It was awful when the hospital moved her there (at a bad time of the day when the “sundowning” is at it’s worst.) It took myself, my sister in law and 5 of the staff to keep her from running out of the door, she was so angry. My husband was out of town and couldn’t be there to help. We have also had concerns as to her care. We visit frequently at all different times of the day to make sure she is being treated well. So far so good with the exception of a couple of incidents (like clothes disappearing and not getting enough showers). She has also lost bladder control. It’s a terrible disease and I wouldn’t wish it on my worst enemy!!
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Oh my gosh Ruth, what a terrible thing, to see her struggling to escape – it must have been so traumatic for you all. Sometimes the things we have to do for our loved ones hurt so much. But you did what you had to do for her, and she’s in a place where she can get professional care. She’s lucky to have a family who cares enough to make the tough decisions for her and to check on her. I hope she has settled in and has forgiven, or forgotten.
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I can so relate to nursing home care. When Jack was fighting the advanced stages of prostate cancer early in 2010 he had to be placed in a couple of different nursing homes temporarily. If a family member is not present as an advocate, the care can sometimes be horrendous. I was working full time here in Peoria at Saint Francis College of Nursing and then went to visit Jack after work and into the evenings. One day I went to his room and found he was lying in soiled sheets. Found out from his roommate that he slept through the night and day without any staff cleaning him or his bedding. I was absolutely livid. Jack ended up having to be admitted to Saint Francis with a C-diff infection which really set him back. So I have had my share of experiences with nursing homes. Granted there are excellent homes out there, but it seems the bad ones outnumber the good ones.
Sadly my Jack lost his battle on Jan. 13 of this year. It has been a tough 7 months since he died. I miss him terribly but have found a hospice sponsored grief recovery group which I meet with every Thursday night. I highly recommend that survivors take advantage of such a group. It has been so, so helpful for me. There is a wonderful bonding with the other members who have all lost loved ones to all types of cancer. Today is my Jack’s birthday. He would have been 70 today. I especially missed him during the special weekend here in Peoria for Dan’s 60th birthday. Jack knew Dan back when both were younger here in Peoria. Jack was so proud of Dan’s success with his career and shared with me many good memories of when they were younger. Ironically the day that Jack died, Jan. 13, 2011, was the day that Dan was inducted into the Rock n Roll Hall of Fame! I like to think they are together in heaven watching over you Jean and myself. God bless you for all you do to help others who are suffering. Your website has been so wonderful and I have recommended it to many of my friends who have suffered the loss of their loved ones. Members of my grief recovery group also have found it to be so helpful. Continue your great work, Jean.
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I’m sorry, I meant to say the Hit Parade Hall of Fame. We all know that Dan will someday soon be inducted into the Rock n Roll Hall of Fame.
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Hi Jan,
I have thought of you often, and wondered how you were coping and hoped you were doing ok. Thanks for your views on nursing homes and care or sometimes lack of. Care giving seems to be with us, whether our loved ones are in a facility or at home. Always watching, always caring… what else can we do ? Thanks for your input, and thank you for the recommendation of this amazing site to recovery group.
~Char
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Ruth,
On the upside, she does have wonderful family to love her and make sure she is being treated with dignity and respect. It is an awful disease, that I have not have any dealings with at this time, and I thank God every day for it. My thoughts are with you all as you go travel this road.
~Char
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To Char and Karen, thank you for your kind words, it is a comfort to know how that as tragic my dad’s alzheimer’s story was, it has moved along life’s pathways to help others become aware so that their loved ones do not experience such neglect. I wish you and your families well. cheers, john
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John,
Thank you for your story and guidance on health care facilities. If only all of these so called “best places” would try to remember all people should be treated with respect, kindness and patience. You make compelling points, and I know the information you have shared will come in handy for many of us. Thank you again, and my best to you and your Mom.
~Char
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Hi John, glad to hear you and your family are all doing well. I’ve read your story now for the 3rd time again and I haven’t forgotten either the sadness and anger I felt after hearing what your dear father endeared as well as you and your mom’s hardship over it. Alzheimer’s does not only affect the patient, it takes its toll on the entire family, therefore, it is a disease “of the family.” Your dad’s story left an impact on me and helped me to be more aware of the many potential problems that can exist in these care units once I had to take the steps to put my own mom stricken with the same illness in a facility. Thank you for sharing that difficult story with us. God bless your dear dad, your leader of the band, and how amazing and wonderful you got to hear the legendary Dan Fogelberg sing it to you live on that very special night.
All the best to you and your family, Karen
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John, I’ve been thinking about you while reading the recent comments about problems with nursing homes. It’s been ages since we exchanged emails and I’m wondering how you and your mom are doing? ~ Jean
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we are well, thank you Jean. I wish you the same. cheers, john
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Thanks for this post. I am so sorry your father encountered such disrespectful and rude caregivers. It makes the treatment we are dealing with a bit paler as I don’t believe my mother has been yelled at but they certainly are not providing the kind of care they advertise that they will.
I am glad that you and your mother are doing well. Thanks too for the admonition to not give up but to fight the good fight.
God bless.
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Thank you Sherrie. I wish you and your mom well.
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