After getting the devastating diagnosis of Advanced State Vascular Dementia in December 2021, the first thing that crosses our mind is “what is next?” Thankfully, we had an appointment already scheduled with our primary doctor for the following Tuesday, which helped give me, as a wife/caregiver, some hope. I didn’t know what direction we would be taking, but I also made a promise to my husband years before that I wouldn’t put him in a nursing home.
Knowing what the report said and everything that had been documented by me on what has been happening, I felt that emailing this information to the doctor, instead of blindsiding him at our appointment, was a good idea. I was right…I received a message from the doctor asking us to come in a little early due to the volume of things to be discussed.
My husband had his normal, routine, bloodwork done the week before. But now with the diagnosis of Advanced State Vascular Dementia, any of those numbers were pretty much irrelevant at this point. The first week of January, 2022, we arrived at the doctor at the time he asked us to come in and started the discussion. He had read everything I sent him, reviewed the MRI he had recently, and notes I had sent back and forth to Neuro. He started with stopping most of the meds that Neuro had prescribed and opted for one that was known to work with dementia….Seroquel. He started at a low dose with he and I communicating at a minimum of every 48 hours to make any needed adjustments. As a wife/caregiver…this medication was a saving grace! It calmed a lot of anxiety and fear that my husband was having. Plus, I still had Ativan as needed, which was less and less.
We were on a steady course and at our next appointment with our Neuro doctor, nothing new was offered from their end. So, at the followup with our primary doctor, we talked about new symptoms, declines, behaviors, etc., and I was told we were at the stage to keep a regular routine. I was also instructed that any trips, restaurants, anywhere with a chaotic atmosphere, was out of the question. He also said that at this time, not that anything was planned, there should be no new furniture purchases and absolutely do not rearrange the furniture. We had to keep everything the way it was comfortable and familiar, but most of all, my husband’s safe place.
I still kept in close contact with our primary doctor and still making some medication adjustments as the disease progressed. In March of 2022, with things getting worse rapidly, I completed an online questionnaire about dementia and hospice online with a company I was already familiar with and used for my parents and grandmother. The next day, I received a call from them at which time I reviewed where we were at and current symptoms. In February of 2022, I had arranged to have an aide come to the house for respite but my husband didn’t like the people being sent, which made me hesitant to leave the house for any respite time. Talking with the hospice coordinator, I knew in my gut that this was the next route to take.
After signing the contract and emailing it back on a Friday afternoon, Monday morning we had an RN from hospice at our home to do the admission. The nurse confessed that she didn’t believe my husband was as bad as they had originally thought and wouldn’t qualify for hospice. I explained that he works hard to appear “normal” and still had that ability but it wore him out to the point he slept for 2-3 hours after she left. It didn’t take long for the nurse and the aide that was coming 3 days a week starting seeing the fast decline. By May the nurse was telling me that the disease was progressing quickly and there would be no issue getting him re-certified at the end of May to continue hospice services.
I have to say, I got pretty lucky with the people I was working with. The nurse told me to reach out to her with any changes, no matter how big or small, so if medication adjustments were needed, we could get it ordered sooner than later and keep things as calm as possible. Then, some breathing problems started and we added 20liters of oxygen. It helped and he didn’t need it all the time, refused to sleep with it on, and was OK if he didn’t have to wear it all the time. Some days, oxygen was needed more than others. The goal was always to keep him comfortable.
As a wife/caregiver, the worry never stops. I admittedly wasn’t sleeping well because I was worried he would get up during the night. I had added cameras throughout the house that alerted me to any movement, but I was still on edge. I knew I had to sleep…I was burning out quickly. After conversations with the nurse and the chaplain/counselor at hospice, I was able to talk things out, which helped immensely. I still won’t go to sleep or attempt to sleep unless I know he’s asleep. I’m also very in tune with certain sounds that my husband would make that were more than just going to the bathroom and could wake up quickly most of the time.
I have to say I am so thankful that behaviors I feared would happen, never did. My husband didn’t wander…in fact, he didn’t do anything without asking me first. He could still shower himself with some assistance by me, but he knew when this got to be too much or I was hurting myself to do it, the aide with hospice would begin helping. So far, I’m still able to help, even though I need to walk him through everything he needs to do. He was good at listening to me and asking if he wasn’t sure.
I’d like to say that, with the addition of hospice, things got easier…but emotionally, this was taking a toll on me. Hospice made a huge difference in Todd’s care and made a lot of things easier. Being able to communicate with his nurse any time, even on days she wasn’t scheduled to come, it wasn’t long until I started having the Aide come 5 days a week.
One thing you need to understand, as a wife, it was hard for me to ask for help. I thought I could handle it all. I mean, I handled his time in the hospital in 2019 and rehab afterward with no problem, why couldn’t I handle this? The huge difference here is that in 2019, he was recovering and things steadily improved. Now, he is declining and the disease is quickly progressing.
My husband was getting more and more confused….but aware of everything that was happening. I’m still not sure if that was good or bad. The hallucinations increased substantially, but he wasn’t scared by them…just annoyed and wanted them to stop.
It is now mid-June 2022, his nurse comes 2-3 times a week and we have an Aide 5 days a week. The chaplain/counselor checks in with me at least every 2 weeks, and our conversations have helped me through all of this.
Knowing the love of your life is dying is hard enough, watching him swiftly disappear is a whole other ballgame. Confusion with the simplest things are constant. He thankfully is still not wandering and asks me before he does anything. But seeing this man who was one of the smartest people you every knew, a person that could do difficult math in his head (and have it figured out before I even got my calculator app open), slowly become what is the essence of a toddler or young child, is the hardest thing I will ever do in my life.
We went from taking one day at a time to taking one moment at a time. We try to enjoy things, even though that is getting more and more difficult. We keep our routine, which makes a huge difference, and I talk frequently with his nurse and aide on changes, new behaviors, etc.
I’ll add that June 1, 2022 marked 10 years since we got together (see Pixie dust post). On that date, I got a tattoo, my one and only tattoo, that represents our entire relationship. A photo was added to this post…a tattoo of a heart with the infinity symbol though it and both of our names. It is on my right wrist so that anytime I start to feel sad or emotional, I can always keep him close to my heart…while he’s still with me and after he is gone.
The emotional side of this disease for both my husband and myself is unimaginable. In the end, I know keeping him home was still the best decision and I will not have any regrets no matter how difficult this is for me. My husband has said on more than one occasion that he just wants this to be over. He even prayed one night that he could go with the angels and also asked God to watch over me, his wife, forever.
One day at a time, one moment at a time….until the end of time. A love that can never die and will last to infinity.