A Season With Niagara Hospice and Alzheimer's Disease

As Alzheimer's disease and related dementia patient admissions continue to increase in our region, it is essential to devote additional resources toward tailoring the comprehensive care required for the challenges these patients and families face in their daily lives. To address the needs of dementia patients, Niagara Hospice collaborates with medical partners to provide unique interventions and ways to alleviate the stress and fatigue that caregivers experience.

Niagara Hospice has developed an enhanced Alzheimer's disease and related dementia patient care program with customized support for families. The clinical team has adopted additional cognitive screening and assessment tools to determine the proper care plan for each patient's diagnosis and the prognosis for each condition.

Niagara Hospice is providing clinical staff with nationally-recognized dementia care certifications to ensure the highest level of care for patients and support for families. A dedicated team is using additional cognitive screening and assessment tools to identify the proper diagnosis and appropriate care for each patient. The program leader earned a CADDCT (Certified Alzheimer's Disease and Dementia Care Trainer) designation that has enhanced patient evaluation capabilities and expanded treatment methods. 

Susan Beabout has written about her Niagara Hospice experience with her husband Walt, who had Alzheimer's disease. 
Thank you Susan for sharing your story for other families in the community. 

By Susan Beabout  

My husband, Walter, was diagnosed with dementia in 2010. It really started after his sister died in July 2009. He could no longer do simple tasks like pay bills, carry on a normal conversation (he repeated himself), prepare simple foods or drive without getting lost. He was always confused about what time of day it was. He quickly had all 10 symptoms of Alzheimer's disease.

I was his caregiver all those years as he gradually could no longer do basic things, including dressing himself. He started falling more, hallucinating and thinking he was living in decades from the past. He thought we lived in a hotel and it wasn't our home. He could not read or follow television shows anymore, even game shows or MASH, his favorite show. 

I remembered that Niagara Hospice visited our work to give a presentation on dementia, and the speaker expressed to me to call if I wanted an evaluation of my husband. It took me three years, but on March 29, 2018, I finally called them. They came the next day, it was Good Friday. The social worker described the home care program. She said an admitting nurse would come on Easter Sunday to complete the evaluation and converse with the doctor regarding admission. I described to the nurse his symptoms of consistent falling, hallucinations, no short-term memory, not knowing his sons, confusion and increased combativeness. After examining Walt, she called the doctor, and he was accepted into the Niagara Hospice home care program.

After that, everything was a whirlwind. Walt was assigned a social worker, nurse and spiritual care person. I asked for an aide for three days a week and a Hoyer Lift, so I could pick him up when he fell without having to call my neighbor or son to help me. They brought it the day after Easter. All of a sudden, I felt like I had help and support for the first time in years! I could call anytime, and they answered my questions. I learned a lot from all of my team and gained confidence that I was doing the right thing to care for him at home.

He had good weeks and bad weeks. He was not as good as the summer before when he would sit on the porch for an afternoon. He only wanted to go out there a couple times and wouldn't stay long. Some weeks he would sleep all the time; other weeks he would be awake all the time. My prayer (and my pastor's) was that he would make it to attend our son's wedding last October. This meant he would have attended all of our boys' weddings. He had a wonderful day at the wedding on October 13 and certainly enjoyed himself. 

He slept all the next day and did not remember the wedding, but he did enjoy it.

In November, a change occurred that was more drastic. He stopped eating as much. Every weekend, I made him scrambled eggs with a muffin or toast. He would just leave it. He stopped knowing how to feed himself, so I fed him, but he wouldn't eat it all. He wasn't drinking as much water or juice either. That was the beginning of a rapid decline. He also became more combative about dressing and changing him and moving from the couch to the chair or bed.

He became withdrawn and more hallucinations occurred like seeing his dad, mom or sister. He insisted he had to go to work or to school. His aide would tell me how he shared many things with her about his earlier life - like it just happened. He would have a couple weeks of sleeping a lot and then other weeks he would hardly sleep.

January brought about less eating and drinking and increased anxiety and nervousness. Our third grandchild was born on December 31 in Texas, where our oldest son is stationed in the Air Force. I planned a respite care for Walt at the Niagara Hospice House so I could see my new granddaughter.  Nothing felt right, though, to do this. My social worker called me that Monday morning and said that they could not take Walt at the Hospice House because they were full with emergency patients. I was disappointed, but I rescheduled. God knew what he was doing because that week was when Walt took another drastic turn. He got restless leg syndrome and could barely sleep. He stopped being able to suck a straw or take his medicine. I crushed the necessary ones for the nervous legs and gave to him with ice cream.

I cried a lot that week because I sensed the end was near. I requested an aide for every day and was granted one.

Saturday, January 19 was the worst day of my life. Walt was definitely worse and more nervous. A nurse came to check him over, and I discussed with her if I should take him to the emergency room. If it was a UTI or another infection, then it could be treated. If it was kidney failure, then that was more questionable. She called his doctor, and while waiting for a return call, Walt vomited again, this time a lot more. I called 911 and realized if he was admitted to the hospital, he would have to go off hospice until he returned home.   

I had them take him to Lockport, because there was a major snowstorm happening. Walt was very combative and struggled even when he was touched. I tried to calm him. They gave me lemon swabs for his mouth and tongue (it was swollen) until we figured things out. We were there seven hours and after all the testing, the diagnosis was very poor. At first, they said they would transfer him to Buffalo General because of kidney failure. 

Finally, the emergency doctor came to talk with me at 11:30 p.m. He said that any treatment would be aggressive and his chances of making it were not good. Besides his kidneys only slightly functioning, he had a major heart problem (which he never has had in his life) and he was internally bleeding, probably his liver shutting down. I realized then, that he was going through the natural dying process, and his brain, which controls all body functions, was no longer able to control his organs, so they could not work properly. I agreed with the doctor, and he gave him another drug to calm him in his IV. They called for an ambulance to take him home as well as called Niagara Hospice to explain the prognosis.     

Once I led the ambulance home in the terrible snowstorm, and they got him in his hospital bed at home, he slept all night and all the next day. Hospice called and sent a nurse and aide to help me. My twin boys met me at the house that night, and my oldest son flew into town on Sunday night.  

On Monday morning, I tried to give Walt some water with a syringe. He looked at me, held up his hand and said very clearly, "No more", and those were the last words he ever said. I did not try to give him any more water and just put the meds under his tongue.  

My hospice team was great during this time. They gave me a booklet, "Gone from my Sight" that clarified everything I had experienced over the last two months. I wish I had that booklet when Walt first became a hospice patient. He had followed the signs exactly as described in that booklet. 

 Walt's last days were spent mostly in the next world. He no longer responded to me, even though I read him the Bible, prayed with him, and talked with him. I hugged him tons! Gone was the nervousness and combativeness, as he was too weak. When I came downstairs on Thursday about 8 a.m., I could see from the stairs that his face was very relaxed and peaceful. As I came closer, I realized that he was gone. After checking to be sure, I called Niagara Hospice to check him and declare his passing.

  Even though there were times of great difficulty by keeping Walt home to care for him, there were also many great times as well that he would never have experienced if he had been in a nursing home.  He wouldn't have the loving care of his wife—I had promised "in sickness and in health" when I took my wedding vows! He enjoyed many special times with his family, including all three of their weddings!  He loved going to Darrell's every Sunday for dinner with us.  He also loved watching his son, Jason, and his friend and brother, build his handicap ramp while sitting in his porch spot!  He had lucid moments when we could share a memory or he could just talk.

It wasn't easy, but it was satisfying and the right thing to do for me. I'm extremely happy that he was able to be home, even when he died. Hospice care allowed me to do that — I'm eternally grateful to them (Patty, Cheryl, Melissa, Tammy, and Chelsa)! Walt was at peace in the end, and I know he is rejoicing with our Lord and Savior in heaven right now (probably with his orange hat on too!).

  

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