My goal, as always, is to support and encourage those who care for someone with a chronic or degenerative disease such as Parkinson's Disease, but not limited to PD.
And if we're talking about brain diseases or disorders, and about degenerative diseases, we understand that while our loved one may not experience all these symptoms, the number and severity of these symptoms may increase as the disease progresses.
First, there will likely be a decline in the ability to carry out executive functions. "Executive function and self-regulation skills are the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully. Our brains need this skill set to filter distractions, prioritize tasks, set and achieve goals, and control impulses." – Harvard University website. The leader of our local Parkinson's support group often says, "Parkinson's patients can do only ONE thing at a time. Don't ask them to do more." If we remember that, we will not become frustrated when we witness it in our homes.
Second, cognitive decline is expected. This includes forgetting when we have just told them the same thing 3 times in a day. All of us will remain calmer if we just repeat it again. Let's try to avoid saying, "Don't you remember I told you . . .?" This decline can occur at any stage of the disease. Another part of this is their inability to make decisions. I used to ask my husband what he wanted for lunch. When he couldn't think of anything, I started giving him a list of 4-5 choices. When it became too difficult for him to make a decision between those, I narrowed it down to 2. Eventually, I stopped asking because he could not even decide between 2 things. That was the result of cognitive decline.
Third, the ability to reason will decline. This is especially significant when hallucinations become an issue. When my husband first "saw" things that were not there, he laughed about it and realized they were not real. But gradually, as his Parkinson's progressed, he became less able to explain away the bugs that he saw, the water he saw cascading down the walls and puddling on the floor, and then the men outside with cameras taking pictures of him. This can also apply to their care. When our loved one is being reasonable, they may understand that a certain medical procedure is necessary. But as their ability to reason lessens, they may become combative or argumentative about medications or medical procedures.
Over the course of the disease, it becomes clear that our loved ones have changed so much that they no longer seem to be the same person we once knew. It may seem that their personality has changed, and in many respects – it has.
It is normal to grieve the loss of our partner, our loved one, our spouse, while they are still living. But we know that this change is not calculated on their part. Instead, it is the result of the degeneration of the brain caused by the disease. These changes can lead to a reversal of our roles in our relationship and even a distancing emotionally and psychologically. This is normal, and while it is difficult to witness, it is part of letting them go. It is natural and even helpful as they become more dependent on us and others.
Being a caregiver is not easy in any sense of the word. The days are long, and the nights become longer. We become less of a couple, and more of a patient and nurse. We must take over the decision-making even when it is not our strong suit.
BUT the good thing is that we are not alone, and we are doing the right thing by caring for the one we love. As caregivers we must lean in toward our friends, our family, our support group, and our faith. Each of these plays a vital role in our success and our sanity.
Thanks for reading and commenting. I truly appreciate each of you. Please reach out with questions or concerns, and I will be happy to reply.
Check out my new website!
www.hopeforparkinsons.net
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