I might not be too popular for writing this post. Very likely, some will be offended at what I have to say. But my intent in sharing this blog is to share the whole journey: the good, the bad and the ugly. It defeats my purpose in writing to pick and choose which pleasant or unpleasant things I will share.
When someone you love is diagnosed with a terminal illness, emotions run high. You will encounter many people-friends and family alike-who are “devastated” with the news and some will spend days crying about it. Through weepy eyes and sorrowful voices, they will tell you,
“If you need anything-anything at all-I’m here. Please don’t hesitate to call.”
The problem is, talk is cheap. If you are just starting out on your dementia journey, take it from me. There will be many well-wishers and good-intended people in your lives…in the beginning. As time goes on, you will learn who is just talking and who actually means what they say.
Sure, people get busy and people have their own lives and their own problems. Others are just full of excuses, to put it bluntly. But why cry and pity and offer to help if it isn’t sincere?
Lately I’ve been feeling very discouraged. I try to look at the bright side and see the cup half full. When my dad had the ceiling fiasco, we had friends and family who dropped everything to come over right away and help. My heart was touched and full of gratitude for those people who were there for us in our time of need. But we also had the well wishers, “if you need any help…” who couldn’t be bothered to even return phone calls to help my dad with some finishing touches (might I add that my dad is not a freeloader, he was going to pay these “friends” what they were worth to get the job done quickly so as to restore order for my confused mother).
This is just one example of many that I could share. One of our biggest struggles is caring for my mom. She is to the point that we really aren’t comfortable leaving her alone. It is impossible for me to be there with her everyday. My dad has to work; he’s not even close to retirement. When it came time to put those words into actions, there was little help to be found. My mom has one brother and his dear, sweet wife, who go over every week. I know it’s a big commitment. I know there are probably other things they would like to do with their time. I know because I’m in the same boat; I have a lot on my plate as well. But their love for my mom and my dad keeps them dedicated to coming over despite the obstacles they may face in coming.
We haven’t been this lucky with everyone. We have had some family volunteer to come over, only to “call in” most weeks that they aren’t feeling good or have other plans and can’t come in. Some have volunteered to help “in any way” but then want it done on their terms only, such as dropping mom off at their house for the day. Anyone reading this who is caring for a loved one with dementia knows that that is NOT going to work out too well. With mom’s obsessions and rigid routines, she thrives best in her own environment. There’s no way we could get her to go to someone else’s house for babysitting.
We’ve had some who have said they are available to help and then expressed their hopes to others that we hire them on as a paying caregiver. We’ve had some offer to help clean,
“You just let me know what you need done and I’ll do it.”
When I asked her if she might be able to do some dusting around the house, her response was,
“Oh, I really hate dusting. That’s my least favorite chore.”
Needless to say, that was the last time she volunteered to help with chores.
We’ve had some who have offered to come and help but then asked for gas money or to borrow dad’s car to drive mom across town to run errands. And complained at how “unfair” it is that dad would not let them borrow the car (despite the fact that he did give them gas money).
The thing that hurts the most about this is that there is no spirit of love and service. This is not family. Family is supposed to be there for each other through thick and thin with no expectations of anything in return. At least that is what my dad taught me. That is the kind of family member he has been to everyone.
In fact, that is the kind of MAN he is. Throughout my life, I have watched my dad give countless hours of service to others: friends, neighbors, family members, church members (my mom has given lots of service, particularly in church, over the years as well). He has done it all out of the goodness of his heart. He’s never given a minute of service-not even a minute!- with the expectation of gaining something for himself. He would never even think of such a thing!!
Lately I’ve really been struggling with feelings of bitterness and resentment at the lack of reciprocation my parents have received in their hour of need. In part, maybe it’s our own fault. Outside of family, it is extremely hard to ask for help. My dad won’t ever ask for help (except in the instance such as the ceiling, where he fully expects to compensate that help). But family and close friends and friends from church know of the struggles we face. They ask; I am open in sharing our struggles and challenges. I feel abandonment for my dad, if that makes sense. I am hurt for him; hurt that people can’t see the sadness and the despair and the challenges he faces and try to help lighten his load. As if it isn’t hard enough to have lost most of the woman he has known and loved nearly his entire life, he now faces the challenges of balancing all of her duties that she once tended to (cooking, cleaning, laundry, bill paying, grocery shopping, etc) WHILE working his business and WHILE caring for her. To have family offer to help and then flake out when push comes to shove only adds more hurt and more stress to the situation. I know he feels he is in way over his head…we all do!
Last Saturday morning, my husband took our boys over to my dad’s house (while dad was at work) and mowed his lawn. He didn’t tell him he was coming over, nor did he plan on telling him that he was the one who did it. He had our boys pick up the leaves and clean up the trash that the wind had blown into the yard. Later that day, my dad called me and said he knew Jeff had come over. We both feigned ignorance at his accusations, but he said this,
“I came home and noticed somebody did my lawn for me. I was feeling pretty good, thinking someone from church must love me and must have come over to mow my lawn. But then I realized that nobody would do that for me; I have no friends so it must have been Jeff.”
It hurt me to hear him say those words: “I have no friends”. After all he has done to help others in his life, it’s a shame that he feels this way. I know many who love my dad and think the world of him. But it’s true what they say: actions speak louder than words; now more than ever.
It isn’t enough to put the offer out there. If you don’t mean it, don’t say it. It hurts more in the end when people give false illusions of compassion and concern. For those of you reading this who are in my shoes, you are probably shouting your “amen” at home! You know exactly what I’m talking about. For those of you who know someone who is struggling with this disease, or any terminal/debilitating illness for that matter, I challenge you: reach out to those people! Don’t wait for an engraved invitation to help. Do not give empty offers and vain condolences for their situation. Be proactive and do something! Take a meal over, visit with the person, show up and do their yard work or clean their dishes, take them a plate of cookies…even just sending a card or a note to let them know that you are thinking about them can mean a lot!
There are many lessons I am learning in this journey of dementia. This is just another one of those lessons. I am far from perfect and I’m sure at one time or another in my life I have said the same thing,
“Let me know if you need anything.”
I think twice before I use that phrase now. I will take this as a life lesson to be a do-er, not a say-er.