This is a story about my journey and my experiences with my husband who was diagnosed with early onset Alzheimer's at about the age of 64. The struggles were many and often very difficult. It starts with the heartbreak of getting this terrible diagnosis till the time I had to place him into a nursing facility then the struggles of adding a pandemic outbreak added to the mix.
I hope the story will benefit those going through the same thing or something similar to gain some insight into this terrible disease as well as a pandemic that has never been seen in the modern world.
My name is Pam. I am a 64-year-old woman that recently became widowed. My husband and I were married for 40 years. To your young people 40 years sounds like a long time, and it is, however it seemed to fly by in the blink of an eye. We have 3 children together as well as 3 grandchildren and as of this writing our 1st great grandchild is expected in December of 2020.
At about the age of 64 my husband started showing signs of dementia. There were many signs such as the obvious which is forgetfulness. Not just forgetting days or dates or names but also forgetting where he was or where he was supposed to go, etc. It started to become steadily worse over time. I began to worry and decided it was time to see the doctor.
His doctor sent him to a neurologist and he was tested and it was found that he was indeed suffering from dementia and we were told it would get worse over time. It was then discovered that his dementia was categorized as Alzheimer's. This was devastating. At that point I was determined to keep him home. We had done this many, many years ago for his mother as she also had Alzheimer's. We had decided to keep her home as we felt this was in her best interests. She stayed home until her passing at the age of 74.
Once again, I am faced with this disease but now it's my husband and I also felt that it would be in his best interests to keep him home. After all I got to know what to expect and what to do and when. So, my journey starts here. It began easily enough or so it seemed. As the disease progressed, I found it harder and harder to deal with this as he was my husband not my mother in law and yes there is a big difference.
Fast forward to 2018. It now becomes much harder and once he started to get out of the home, I was terrified as he would not have known how to get back in or even know where we lived and should that happen he would be the next day's news and I could not do that. Now I had to make the very hard decision to place him in a nursing home and that was yet again a devastating milestone. Though it was very tough in the beginning he did become familiar with the routine and was pleasantly kept active and engaged which was very important for someone with this disease. Even though it was hard to leave him there I started to feel a little better as time went on because I felt he was safer and had better care then I could give him and that was a good thing.
Now we fast forward once again too March of 2020. At this time there was a pandemic that started that was called the Coronavirus or for short Covid-19. This is world-wide and has never been seen in the modern world. This Coronavirus has thrown every one's life into turmoil. There is no normal anymore. This pandemic has caused nursing homes to close down and not allow visitors because of course these people are all the most vulnerable population.
There is no visiting any family members that are residents in nursing homes. We are kept in the dark most of the time as they become severely understaffed as they also are getting sick.
Now this is where it gets so unbearable for those families of residents. We become frantic and that just adds more anxiety on top of everything else. You already have a sense of guilt for leaving your loved one in a nursing facility and now you have a pandemic that is keeping you from seeing your loved one and you have no idea when this is going to end or even if your loved one may get sick and possibly die from this but what can you do. You hang on to every bit of information that you can get and just hope and pray that your loved one will survive this.
Now, it is July and it has been four months since I last saw my husband. I was able to call him every day which was at least something. Now I am being told that he has stopped eating and hardly drinks anything. He has also stopped answering his phone for the past two weeks. This is very scary because I know what this means. It means it's the beginning of the end as it was the same for his mother.
I keep calling and asking the Social Worker to let me see him. He needs to see me as I do him. However, what I am told is shocking. I am told that I cannot come to see him unless he is "in the act of dying"! What!! How can they say that? How can you possibly justify that statement? How can you take that kind of answer? All I could do was keep calling and keep telling them that I need to see him now and not when he's literally at death's door. They claim that you are only allowed to see your loved one in special circumstances. If this isn't classified as being special circumstances then I don't know what is, and they just keep telling me the same thing over and over again.
This is my beef...the employees of nursing homes go into those facilities everyday 24/7. Now all have protocols in place to protect themselves as well as residents and coworkers. While these employees are not working, they are in contact with family members and friends, and these people are in contact with more people, etc. So, tell me why I can't follow those same protocols as the employees do? I was even willing to sign a waiver releasing them from any responsibility should I become sick. But even that didn't help.
I am now frantically trying to find some way to see him. I start to email whoever I think can help. I email the two Senators in our district, and I email AARP because I know they are advocates for the older population and they would know what to do. Unfortunately, it was on the weekend so I had to wait till Monday before anyone would be in touch. And, someone did. I received a call from AARP-NH. She told me how sorry she was that I was going through this and that she was going to help anyway she could. I was elated. I thought, finally someone who is listening and someone who was going to help. This was finally going to happen. Well, think again!
On Monday, July 6th, got a call from AARP. Later that evening, around 7 pm, I received a call from my husband's hospice nurse. She told me that I needed to go and see him asap as he was now in the act of dying. I thought this was the most devastating news I could get and I wasn't sure I was going to be able to handle it. After all this time, this was in fact the only way I was going to see him after all. I went immediately to the nursing home. I rang the bell and was let in. I did have a mask on as this was required and with good reason. My temp was taken and I was asked a few questions one of which was why was I there. I told the person about the call I received from hospice and just like that I was let in. I didn't know whether to be grateful or irate considering everything. Maybe a little of both.
I got to his room and when I walked into it, I got the shock of my life. Here was the love of my life lying there looking so thin, so weak that it brought instant tears. I dried them quick because the last thing I wanted was to cause him the least bit of stress. I sat there for a long time just talking to him and letting him know I loved him. He could barely speak and even when he did it was garbled. Then something amazing happened. He opened his eyes, looked at me and said "wow, I love you"! I was so overcome I just wanted to burst into tears but I didn't. You see, even though I saw him most every day before the pandemic, he would say that as if it was the first time I had visited and, after not hearing those words for a long time, he said it and quite clearly. It was music to my ears. I left late that night.
On Tuesday, July 7th, I got a call from someone who was with the nursing home division of DHHS, (Department of Health and Human Services). This was getting escalated and I was so glad. This time, I was going to make it in to see him. Well that is not how it worked out.
I went to the nursing home quite early, about 7 am. I got in there the same way I got in the night before. Now, I live with my daughter and she was away. She had been at her best friends, which is a 2-hour drive from us. I had called her late the night before to tell her about her father. She told me that she would leave early in the morning to get back in order to see him.
When she got there, she called me to let me know. I went downstairs to get her in but wanted to ask the nursing supervisor to make sure it was ok. I was told she was in a meeting but right at the same time, she came out as the meeting had ended. I saw her and she saw me and the next thing I know there were a few people surrounding me. They all seemed to be talking at the same time asking me why was I here? How did I get in? Etc... I told them about the call and what followed. All of a sudden, they are telling me that I wasn't supposed to be there, that I needed to call ahead and make a n appointment and I could only stay for 15 minutes. What? I couldn't believe what I was hearing. How do you do that? Are you supposed to guess when a person is supposed to die? How do you 'make an appointment ' for that? They allowed me back to see him but again, I only had 15 minutes. However, my daughter did not get to see him that day. Then they set up an 11am appointment for the next day.
At about 6:45am on Wednesday, July 8th, I got a call from the nursing home. My husband was gone. I couldn't breathe for a minute. My mind was trying to fathom what I was being told. How could this be? I had an appointment to see him this morning! After I hung up, I had to tell my daughter. Later on, in the day, after I had made my calls and made the appointment to go to the funeral home to make the arrangements, I realized something. On July 8th, 1984, my mother passed away at the age of 54. Now, this date will never be a good day.
Conclusion
The reason I wrote this story is actually twofold. I started it as a way to try and cope with my sorrow. I have not been able to begin grieving for my husband yet but this is a start.
The other reason I did it was that I do hope this can help someone else. To let them know they are not alone.
Most of all, I want to send a message to those that are going through this that you need to strongly advocate for your loved one as they can't and they depend on you to be able to have the best quality of life they should have in their declining years.
Also remember, no one deserves to be alone at the end of life.