Dementia and Death, a personal story

Tuesday, February 19th I received a phone call from the POA (Power of Attorney) to rush to my patient’s house. Her husband has just passed away and I was to be the first on the scene as a caregiver. 

   I was with my wife at Rose, at a boutique, Picking out a dress for a coming occasion. The call made us drop everything. My wife went to a friend’s house and I went to the scene. I called the caregiver that was there that day, and told her that Howard had passed away. Understandably, she was upset. She was there  in the AM but had hurt her arm during that weekend, and asked for the overnight shift worker to come in. They obliged an that was seemingly that. Over the phone she began to cry. 

“I had just fed him this morning! He ate an everything. He even Sat up an smiled at me!” She said between deep gulps of air. 

  

A few weeks ago, Howard had a stroke. Before the stroke, He spoke after a few seconds of thought. His conversations did trail off even before the stroke BUT afterwards, he was basically mute. His wife Christine was and still is a worrier. Anything he said to her about his health, she worried. Every day for the first year an a half I was with them, she would ask him every ten to fifteen minutes if he was ok. 

 “Yes.” 

He would utter and that was it... until the next 15 minutes would go by, then she would ask him again. If he didn’t answer, maybe because he was enthralled by the latest MASH episode, she would panic and ask him again. 

  “He’s fine Christine.” Id call out to her an then that would quench it for the next 20-15 minutes.

   

On quiet days, I’d push their lazy boys to face each other and they would stare at each other. Howard would smile and she would say how handsome her husband was. Certain days, she would want to hold his hand so I pushed their chairs together and she would not let go until it was time to change one of them. 

  You see, Christine has dementia. She also has MS or multiple sclerosis. She has some other ailments too and it’s been about 15 years or so since she walked. For Howard, it’s been since I worked there that he couldn’t walk. So from my point of view, three years both of them were needing 24/7 care. I was told he had bowel issues that made it hard to walk so they did the surgery, he was given six months to live and put on an at home Hospice service. He lived for the next three years. 

  Every so often, a nurse would come by and do his meds, check up on him and I’d tell them about the movement of his bowels an things like that. It helped us caregivers because they would help bathe him, an we could get little breaks when we could from all the stress. Then, late 2018, Hospice told us he graduated from the ‘program’ and is good on his own! Of course that meant no more help, no more support and slowly they were going to take their stuff back that Howard was using. The POA and us tried to keep their stuff as long as we could for his comfort.

  For Hospice, if you don’t have 6 months or less to live, no matter what state your in, they won’t help. They deemed him healthy enough to ‘graduate’ and they started taking their stuff back. Once everything was gone, (it took 3 weeks or so) we appealed their decision and they kind of shuffled their feet to read it him back into Hospice care. After all, they just had ‘graduated’ him. 

    As the caregivers, we kept notes on everything, and just one day, he stopped talking. He said yes to me one time in the span of a month. He tried to vocalize other words as time went on, but they came out as air. That was when Hospice came back. 

  The day he died, they checked his pulse,... and shook their heads. 

 Often Christine got anxious when the Hospice nurse came around. His vitals were always on the proverbial ledges and we had to speak generally to her about everything. We tried to never lie to her but there had to be some times where we did. That day, he had no pulse. Apparently when someone is on their death bed, their pulse is just gone

 

 Howard and Christine slept in different beds but both of them were always  next to each other. Howard was 94 and Christine was 68 at the time. She always says 58, and feels that Clinton wasn’t a good president. She also didn’t know that her once best friend was not a friend anymore. She remembers her job, her parents and when her and Howard first met but they rest of the 41 years were a blur. They were content to be together, taking turns running between them, feeding them both and her kiss good night was one that she blew with her lips pursed and her hand sending the affection in his direction. 

  One night, without a goodnight kiss, he rolled out of bed, no one knew how and it scared the caregiver that night so much, she quit. He tried to get out of bed at night to use the bathroom, forgetting he had paper pants on to do just that. We could never tell if his legs were broken after the fall but hospice gave him morphine throughout the day and into the night to calm it down and at least let him sleep. They said that if he went to the hospital, it would be more trouble than it’s worth.

   The day he died, I got the call,. Iwas 15 minutes away but it felt like forever. 5 minutes away, the POA called and told me that she (Christine) was still in the room with Howard’s body. 

 

  He passed away while she was holding his hand and I had to pull them apart... 

I got to their house and at the end of the bed were the hospice nurses. Three of them just standing there. Christine was howling. They tried to get her hand off of his but she wouldn’t let go. 

 I walked over to her, put my hand over her’s an his and slowly separated them. She got annoyed, screamed out and tried to grab the skin of his arm. 

 “Christine. It’s ok. It’s ok. He’s gone. I got to get you out.”

“NO! NO HE ISN’T! He can’t be! He’s with me right now! He doesn’t look dead! Let me go! Let me go!!”

My phone rang. It was the POA.

“Hey Frank. I’m here now.”

“Is she in the other room?”

“No. I’m getting her harness under her. I’m getting her out now.”

“Ok. Just... just make sure... I.. i.. I don’t know what to make sure of to be honest.”

“I got this.” I told him, then hung up.

The truth is, I didn’t know what to do. I had directions to get her out an that was all I needed though. So I got the hoyer lift out, rolled her onto her sides, slipped the harness under her and watched her howl and scream and sob as she lifted away from her dead husband. Quickly I pushed the hoyer out into the room and lowered her into the chair. Finally separate, I could focus on her. I spun her chair around to face her patio and Hospice had called the Paul bearers already so we just silently waited. The other main caregiver, some 20 minutes later came and bawled with Christine. 

  We wouldnt dare let her look as they pushed Howard out of the room and the other caregiver wouldn’t have dared to go into the room to see him; at least that’s the personal thought of mine. They carted him out under a green satin sheet, on-top of a hospital gurney. Loaded him up an drove away. 

  It’s been a year almost, since he died. 6 days after his death would have been his birthday. The POA, who had to handle the cremation, the bank stuff and all the paperwork, brought up something interesting. 

“If you pick a day to die, do it on the 1st. Every other day is a headache”

We moved on. It was weird, awkward and honestly kind of demented feeling. We had to master it feel like his death never happened. Rearranging couches. Moving his recliner out an keeping her’s in. Pushing things closer to her like table stands and stools to hold tissues and her cups. But her family just like Christine quickly forgot his saddened demise. It was almost like we had to, for Christine’s sake

Part Two

It’s been almost a year now. Christine hasn’t missed a beat on talking about how she misses Howard. Her crying is off and on, though, an has always been. I feel that she accepted his death too well. Even after the first week, it seemed like a distant memory to her. She would ask what day he died. How long has it been?

“I want to be with him.” 

She would say.

“But then id have to be dead too. An I don’t want to be dead yet.” 

Often, us as caregivers, we had no idea what to say. My faith in God was firmly rooted. Heaven and Hell too. I could reason with someone about death but in the end, it was always just my point of view. That and the POA told us not to try an ‘convert’ her in our thinking. But it was her that would try to have us believe what she did. 

“He’s looking down on us. Down on me.” She would say in the beginning. 

“My mom an him, she never saw him. It was a shame. She didn’t like blacks an it was bad for her. We were 25 years apart a. He was black. She didn’t like them.” Christine would pause...

“I don’t know why.”

She still says this to this day. More confident, though. More resolute. Seemingly randomly, she would cry. At first it was out of the blue. Her conversations would revolve around Howard’s death but they were never emotionally charged to us. They were to her though. Those words triggered her emotions.

“He never told you he was sick right? He never told me.”

She would deeply inhale, and speak as if she was consoling herself.

“He always told me everything. I would-“ 

She always stopped and her face shriveled up. Time to get the tissues. 

  From where ever I was, I’d grab a whole box. By time I was back, snot would be pouring, just absolutely pouring from her nose. Tears wet in her eyes. Her tear ducts had issues I guess. They needed to fill up fully to spill over. Often her eyes would burn before one tear came out but the first few weeks she didn’t run out of tears or snot. 

 “Christine.”

I would say

“Howard wouldn’t want you to cry would he? He’d want you to move on. Keep him in your heart. He won’t ever leave from there”

   It began to dawn on me that Christines dementia was getting worse but that she is still as smart as a whip. Her grieving process was well advanced. Me pulling her away from her husband even three weeks ago; that was not in her mind. It must have never been. It seared in mine but not hers. What did sear was that she had no idea what was wrong with him. She forgot about his stroke. She forgot about his health declining. About him not being able to talk.  To her, her husband was completely fine one day and dead the next. 

 Talking to her often resulted in a loop of conversation.

 “He didn’t ever say anything to you?”

He Couldn’t Christine. Before he passed he had a stroke.”

“He did?” My aunt sissy had a stroke an she couldn’t talk after that too. So how did he die?” 

“He must have had another stroke or something. We aren’t sure.”

He didn’t tell me he was sick, though. Did he tell you anything?” 

“No. He probably didn’t want you to worry.”

“But he always talked to me. How come he didn’t tell me?”

“He had a stroke Christine. He couldn’t say anything.”

“He did? My aunt sissy had the same thing!” She couldn’t talk after that. It was so sad.”

   

   This circle of conversation was hard to end. It would be on her mind all day so I had to say things that she had to think about to get her mind out of that loop. One night I told her that fish had no eye lids. That distracted her all right. But it also kept her up all night. To her, fish not having eye lids was a crazy thing to think about. But at least it kept Howard out of her mind for a bit. 

   

Fast forward to almost a year now. He passed on the 19th, his birthday just 6 days later, on the 25th. He would have been 96 now. Christine now 69. We often talk about Howard but lately, she has been calling me Howard. Calling me Hun. She laughs about it and then says sorry. She tells her sister an her brother she calls me hun by accident and I just go with it. From the get go, I thought that his death might send her on a spiral mentally into some abyss and for awhile, strangely, she’s been visibly fine. 

  With his birthday coming up, though, she’s been more testy, more emotional. Her transdermal patches don’t seem to be working or maybe they’re working too well. Either way, she’s under some kind of stress. We still have the same conversations about Howard. She still cries randomly an I think somehow, in her own way, she has tried to make some kind of peace within herself about his death. She has accepted something so fast, her mind pushing away the most painful things and focusing on most of the good, faster than I ever seen. An for that, her dementia must have been I guess what some would say a blessing. Her emotions may keep her in this state of grief though. Who knows what May happen. It’s definitely not good for the heart but no one really knows what State of grief Shes in.  One thing she can’t really stand right now, though, is this Clinton whos in office right now. He shouldn’t be there. She can’t tell me why she feels that way but she does and she lets everyone know she feels this way.