This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.
If you would like to read our story from the beginning, you can start here: How We Got Here…
The word for this week is “fading,” because that is what has been happening to Janet. Her speech is growing even softer and less distinct, and in general she is more withdrawn. On the other hand, there have been a few positives along the way. For example, she has agreed to start taking a medicine that the doctor prescribed several weeks ago, but then refused to take. (I mentioned it in an earlier post.) So far, she seems to be tolerating it well and it is definitely helping with her chorea.
Thanks to the new meds, she is sleeping more, and seems (finally) to understand that she can’t just get up and walk around the house whenever she wants. The other night she went to bed much earlier than normal. About 0 dark 30 I went down to get a drink of water and found her sitting on the toilet, unable to get up on her own. God only knows how long she had been there. She hadn’t used her walker, so she didn’t have her phone with her, and she couldn’t call for help. A large chunk of the problem is that the last time she fell she bruised a rib, and transitioning from one position to another is painful for her. In any case, I have a medical alert system ordered and I’m waiting for it to come in.
She is also craving human contact beyond just Frannie and me. Unfortunately, everyone is so anxious to “protect” her…
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It’s common for caregivers to feel like they are all alone, like a frontier explorer. However, the situation is seldom so bleak – or at least it doesn’t have to be. The other day I saw a post online:
I have read that, “It takes a village to raise a child.”
So I was wondering: Do they just show up, or is there somebody that I need to call?
In the same way, caring for a loved one suffering from dementia is definitely a “team sport.” Sometimes people just show up in your life and sometimes it takes a bit of team building. However, before we get into that topic too far, there is one more thing we need to consider: how “attractive” it can seem at times to be a lone wolf.
The truth is, sometimes people have a hard time letting go and asking for help. Although this condition may be more common among men, I have read stories of both husbands and wives resisting letting someone else do “their job.” One big place where this feeling can arise is when it becomes clear that the loved one they are caring for needs to make the move into a full time nursing facility. I have heard people say things like they feel they are “deserting” their spouse, or letting them down, or breaking a promise.
First, I would say to the caregivers that you are not deserting anyone, or letting them down, or breaking a promise to them – or for that matter, to God either. At some time or another, if your loved one lives long enough they will reach a point where you can no longer care for them. I’m so sorry, but that is just the truth. And when that point comes, your job will shift (but only slightly) from caring for them, to making sure that they have the care they need. One type of advocacy is as important as the other.
Second, if you are reading these words as the one who is being cared for, please start a conversation with your caregiver now, today. Let them know that you realize that someday you will reach a point where they can no longer care for you. Then together, figure out what they are to do when that time comes. Don’t forget to let them know that, whatever may come in the future and no matter what some “future version” of you may say, you trust them and believe in them. Unfortunately, Janet and I didn’t do that and it has made things so very much harder. Please. Learn from our mistake.
So back to team building…
I suppose the first thing to consider is what is a “team” anyway? Obviously, it is a group of people, but more to the point, a team is a group aligned on the same goal. But even more than that, the goal needs to be the right one. Once in a job interview, I was asked if I was a “team-player” and I said, “Depends. Is the team running towards the right set of goalposts?” While there is undoubtedly a lot of bad news in the world of chronic illness, there is one bit of good news: the goalposts are clearly marked.
At one end of the field is a set of goalposts bearing a beautiful banner emblazoned in gold with words proclaiming the intent to provide the best care possible physically, emotionally, and spiritually. At the other end of the field is a goal festooned with a bedraggled, dirty rag bearing a few scrawled words announcing the intent to do just the minimum to “get by.” If you are running towards the first goal, please keep reading, but if the second goal looks attractive, feel free to leave at any time. I am sure that upon reflection, you will see that you have already done far more than is absolutely needed. Of course there is that whole “Do unto others…” trope; as well as the very real possibility that you might, in your old age, fall into the clutches of someone who believes like you do now. But suit yourself…
Under ideal circumstances, the first group of people that we should always be able to count on is family. But we all know, or have heard, of situations where family didn’t always “come through.” In scripture we see hints that perhaps even Jesus had to deal with this issue. But the concept of family transcends mere biology or DNA. As we have talked about before, there is also the family that God creates for you out of whole cloth. These relationships can form anywhere communication is possible – even online. But if family is built on communication, someone needs to extend the first hand. In my family, they used to tell the story of a great-uncle of mine who if he saw someone on the street that struck him as a person he thought he might like to know, would walk up to them, stick out his hand and introduce himself saying, “The name’s Pennington, what’s yourn?”
The second source of team members is, obviously, where you worship. Whether you call your worship space a cathedral, church, temple, synagogue, shul or elementary school gymnasium, the people you find there are an invaluable resource. They may not be experts in the disease or condition you are battling, but can offer other things. Going back to Jesus and His disciples, we don’t really know a lot about them, but if Jesus followed the pattern of other itinerant rabbis of the time they would have been young. Peter was probably the oldest being married, so maybe 18, but the rest? Again, following tradition, most likely between 15 and 17 years old. Not exactly the group that you or I would pick to change the world. But nonetheless, they did it. In the same way, those whom God has called to be around you can help change your world too.
Finally, let’s consider the medical members of your team. For the most part, Janet and I have been extremely blessed. I have described Dr Cotugno in Pennsylvania (who figured out Janet’s diagnosis) as basically a bulldog in a white lab coat. He knew that it wasn’t just in her head, but that there was something wrong with Janet. But more to the point, he wasn’t prepared to rest until he found out what it was – that’s where the bulldog comes in. He was going to find out what was happening.
Then there was Dr Kostyk in Ohio. Knowing that we were “new” to the situation, she went far beyond simply examining and treating. She also spent a lot of time with us explaining and educating.
Finally, what can I say about the crew at the HDSA Center of Excellence at UT in Houston? Their attitude is that although Janet may be the only one carrying the gene, HD is nevertheless a family disease. I’ll never forget our intake appointment with Dr Erin Furr-Stimming. She sat with us for hours talking about everything. We discussed symptoms, family dynamics, medication, the future, everything. The thing they brought to the party was not just medical expertise, but also a lot of heart.
So there you have it. Hopefully by now you should see that there is a great team out there, and they’re waiting for you to find them.
In Christ, Amen ☩
PS: Just a quick note in closing. I have heard from a number of you that you would like to be able to get a compilation of my writing in book form. I am still working out the details, but God willing, that is going to happen this year. It will be available in soft- and hardcover, as well as an eBook. I’ll keep you posted.
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A prayer for when you need a team…
“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the lessons that you teach. But today I want to bless you especially for demonstrating the importance of teams – even Jesus had His disciples. So open my eyes to see the team that surrounds me, and open my heart to enthusiastically join teams that need me. Amen”