Support groups have saved my life. That might be a bit of an exaggeration, but not much. One day after we found out that my husband was diagnosed with dementia, we went to my Aunt and Uncle’s 50th Wedding Anniversary. We put on “the face” and vowed to not mention it to anyone. We were bound and determined not to dampen the mood of the family celebration. One of the family friends and caterer of the event was described by my father as, “a sharp young woman who made some very interesting desserts”. Little did we know that she would become a very important part of our Dementia Lives. She worked the crowd, was pleasant, and made an impact on my husband and I with her sweet smile.
As the evening wore on, my uncle asked my husband the dreaded question: “How is work going?” I held my breath, looked at my husband, prayed silently, looked around the room at family members who might quickly interrupt the dreaded question. Nobody was around. Then my husband answered. “I lost my job. I was fired…again.” Before I knew it, he was explaining that he had lost his second job in one year to the day. Then he explained that he had seen a doctor who had run some blood tests, and had a MRI that indicated that he had dementia. We tried desperately to change the subject and made a mad dash to the door while trying to hold “the face”.
One month later, we were at our first support group meeting thanks to my cousin. The pretty lady who helped cater the event was her best friend, and she “just happened” to run an Early Onset Dementia Caregivers Support Group. Coincidence? I don’t think so. She agreed to meet with both my husband and I before the meeting. She was open and honest, and gave us more straight answers than any medical professional had. She was kind, sensitive, and handled our tears with professionalism. She shared her personal story and welcomed me into the group that she started when her husband was diagnosed.
The women who gathered around the table at the restaurant were kind thoughtful and cried with me as I shared my story. They helped me to generate a list of what I needed to do. They gave me contacts, helped me to prioritize, and gave me courage to forge forward. That was May of 2014.
It has been a year an a half since that horrible month. I now know why our Primary Care Physician cried when she called us in to her office on that April day. We had no clue what the diagnosis meant. All we knew was that my grandmother had dementia and we were pretty sure that it was an old person’s disease. We had no clue that there was no cure and that it was a death sentence.
You hear so much about cancer and cancer research. These days, a cancer diagnosis isn’t necessarily a death sentence. It is horrible, but many survive. I never thought in my wildest dreams, that I would wish for a cancer diagnosis over a dementia diagnosis. I’m not going to lie, I have gone there.
Over time, and a couple of cognitive tests, my husband’s diagnosis has morphed into FTD: Frontotemporal Dementia, Semantic Type. In some ways, this is worse than Alzheimer’s because it moves faster. It totally depends on the individual person and every journey is different, yet similar. However, in some ways FTD is a gift. My husband will not survive a long period of time in the state of “not knowing”, which is what we have prayed for.
We both joined a couple more support groups on Facebook: Memory People and the Association for Frontotemporal Degeneration. This has been both helpful and terrifying at the same time. We read articles from files on the Home sites, and try to get ideas and give support to others who are in similar situations. However, sometimes the posts are scary. As a result, we both have to limit ourselves to the sites. It can be overwhelming and it leaves us filled with overwhelming sorrow. There is so much despair and frustration. Sometimes it is more than we can bear.
For my husband, his on-line friendships through the support sites give him a purpose. He looks forward to posting and seeing the responses of fellow caregivers and dementia patients. The world of dementia is a lonely one, and the computer keeps him connected to the outside world, even if they are people he has never met. He encourages them daily with messages of hope and it makes him feel good to support others.
In the same sense, Facebook and emails from dear friends keep us going. We live in a very rural area, and so we rely on our friendships from afar to keep us moving forward. “Likes” on our pictures and posts remind us that people are truly watching and praying even if we don’t see or hear from them very often.
This week, I confessed to fellow coworkers that I would give anything to stay home with my husband. He doesn’t want me to leave, and I don’t want to leave him. Although I am at work doing the very best I can, my heart is at home with my soul mate. He is at a point where he just wants me to be with him. He becomes agitated when overstimulated in loud, crowded areas where there are many conversations going on at once. I protect him, acting like an insulator between HIS world and THE world.
When I was asked whether I would ever consider relocating to a more local district, and I responded that I couldn’t. My workplace is my support system as well. Over the past 18 years, I have formed bonds with coworkers, families, and administration. I have acquired seniority, a decent reputation, and this familiarity allows me to leave soon after school ends, to do the remainder of my work at home. I love where I work, and I know that when this is over and I have to move forward, the support from my work family will be a huge part of my healing process.
I wish so badly that the government would help to make it financially possible to stay home with our loved ones and be full-time caregivers. It has to be cheaper than Medicaid and Memory Care Facilities. The fact is, I have to work. We need the insurance and the income. I also need something to return to WHEN.
Over the past year and a half, I have come to rely on the people from our family farm who find odd jobs for my husband: my parents, my brother and his wife, and long time employees and friends. Everyone needs to feel needed, and the additional income makes a difference. We have been adopted by some from the church and our community, who have stopped in for visits, invited us to their home for meals, and have made us feel supported and loved. Kind cards have been sent to our address, as well as money and gift cards from those who realize that our budget is very tight, gives us strength and courage to move forward.
More than anything, we are blessed with extended family and a church that we enjoy very much. I wish we saw them more. I worry that people will wait too long and regret not spending more time with my sweet baby while they could. That makes me sad. A year ago, we talked to our pastor and he told me, “If the people don’t come to you, you need to come to the people” so we do when we can. The fact is, my husband does his best at home or in familiar environments. However, because he wants to be with me more than anything, he puts himself out there. We volunteer to do the nursery once a week during AWANA, we go to church once a week, and he goes everywhere I do all weekend long.
I feel badly that our children are going through this sad time. I feel like I put undue pressure on them when I need their support. They are losing their Dad and they shouldn’t have to keep ME lifted up. Although they are adults, they shouldn’t have to be put in that position. That said, I don’t know how I’d do it without them. They get it. They see him when he twitches when there is too much noise, too many people, too many conversations, and too much movement. They get it when he stares, stutters, wanders, twitches, and loses his temper. They respect his need for independence and watch him from a distance in order to keep him safe. They call, write, remind, and gently redirect him when he needs help. How could I do it without them? They really “get” him, but they also “get” me. I can’t hide my voice, my face and my eyes. They just know. For my sweet babies I am so sorry. I’d do anything to keep you from this, from the hurt, but I just can’t and I am so thankful that we can support and encourage each other.
So today, our fellow support group members, I say thank you. Thank you for listening to our story and keeping us going when we feel like giving up. God has been good to us, putting just the right people at just the right time, in our path. My husband and I are so blessed. Thank you all for saving our lives and making a very tough situation almost bearable.