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Topic When a caregiver notices a change... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2016.06.28 11:18
On this journey together, there are times we, as spouses and/or caregivers notice subtle changes. My question is do you discuss it? Ignore it? Or accept it as inevitable?

Carl is highly functioning even after these almost eight years. However, in the past three weeks, he has had considerable weaving back and forth while standing still. He also sticks out his tongue, as some people do when they concentrate.

We do not see the neurologist til September, so my question is a sensitive one. Surely, he knows this is happening, doesn't he? Do PWP want to talk about things like this?

I researched and found a lot of information that this instability indicates his disease is worsening,so I was afraid he, too, has researched, I honor his privacy. What do you do?

By dans316 On 2016.06.28 17:08
Jane,

June would constantly lean to the right when sitting. I would try to straighten her and she always complained because she didn't think she was leaning. I would guess inputs to the brain could be affected as well as the outputs? Maybe Carl doesn't realize it.

Me Ke Aloha
Dan

By flowers12 On 2016.06.28 17:17
My hubby constantly leans to the left when he sits, even ends up hanging his left arm over the arm of the chair if I don't put a pillow in between him and the arm of the chair. He knows he does it but can't stop doing it. He's gotten so when he's in a wandering mood he will just stand still and bend over like he's going to fall on his face. He doesn't realize he's doing it. So many new things start to happen. He can still get around without a walker but I stick close by him when he's on the move.

By jcoff012 On 2016.06.28 18:01
Wow, this is interesting! Thank you for the discussion. So much of PD is so personal and intimate that I really don't think I should point out these signs of change...on one hand, when I look into his eyes he is still my love whom I see as older but unchanged...then, there are times the outward signs of change are sad and discouraging. I just don't know if telling him what I see is hurtful, but perhaps with PD comes a sense of wellbeing (even if it is denial) that helps the PWP manage and cope.

By flowers12 On 2016.06.28 18:44
I always try to shield my honey from the truth of just how much he's failing. I want to cry even now knowing how he would feel if I told him. I'm always holding my breath when we see the Neurologist because he talks frankly and I don't want it pointed out to my honey that he has dementia. He's aware of more than we talk about but when he does say something about how hard it is and how he's tired of being like he is I hug him and tell him it's Parkinson's and we just have to try to deal the best we can and I love him and am here for him. So terribly sad to see our loved ones slowly disappear from us. Dementia has been sneaking up and it's just such a miserable addition to PD.

By jcoff012 On 2016.06.28 19:09
Marilyn, I feel your loss, I really do. I wish there were words or actions to help us...all of us. But, there aren't. All we can do is understand and bolster each other.

Carl and I are dealing with a lot of family health problems right now, so I think that that adds to my concern for him in these posts. As you know, we lost our daughter, had a difficult cancer journey with our only son, and just spent two weeks in Modesto with our son in the hospital. Seems his chemo and radiation have given him congestive heart failure, blood clots in his legs, and damaged his kidneys so badly that he retained 50 pounds of fluid in his abdomen and legs! He lost all the excess fluid after two weeks of therapy, but the damage to his organs is severe. So sad for us both to see, but again, I really worry what this stress does to exacerbate the PD? No one knows what life's journey is like for another. We just want to understand.

By flowers12 On 2016.06.28 19:23
Jane, I'm so sorry you have so much heartache and worry. We just never know what life has in store for us or why. Some of us cruise thru life relatively easy until we retire then everything hits us at once. Others have it hard all along and we wonder why, why, why. No answers and sometimes there doesn't seem to be an end to it. We just have to hold on to those we love and try to find some peace and a smile from our PWP.
I'm sending you good thoughts and will keep us all in my prayers.

By lurkingforacure On 2016.06.28 22:01
My husband has been standing in place and staring for months now. Just today I noticed that he literally stood in the middle of the living room for over 30 minutes, stooped over, weaving a bit from side to side at times, just staring. I have asked him if he is stuck, if he needs help getting somewhere, a chair to sit in, etc., but he always says no. Sometimes I wonder if he realizes just how long he has been standing there. It's almost like he is lost in thought and time.

I don't see any reason to point this out to him-I don't think he can help it, if he even realizes he is doing it.

I haven't stayed silent on the issue of driving, though. My husband maybe could drive, if his meds were working 100% (we haven't had that in awhile), he'd had a good night's sleep, and there wasn't much traffic, but the reality is that like everything else, driving ability is compromised by PD. We have children and I realized how utterly horrible it would be if he were to be in an accident, especially one involving a child, which could have been prevented simply by not getting behind the wheel. We hate it, as it means he is losing his independence. So many things are outside of our control with PD, but one thing we can control is not allowing PD to extend its reach to innocent people in another car. It sure is hard, though, and every once in awhile he brings it up and I have to ask him how we would live with ourselves if he were to injure (or worse) another person while driving.

So on most things, those that don't really affect anyone else, I don't say much, because I don't want to worry him or make him feel any worse than he already does. Things that could affect others, though, I do.

By Mary556 On 2016.06.29 13:08
Dear Jane, prayers for you and Carl.
My Mom had that tongue protrusion at times when she was sleeping. My sister who is a medical practitioner had told us that it was not something to worry about.

My PWP did not have the weaving from side to side while standing still that you and lfac describe. It seems your husband has had more stress lately since both you and your son have had additional medical issues. This is a wild guess, but I'm wondering if the rocking could be related to restless legs or general anxiety, if the motion could be something your DH's are doing to relieve discomfort? My Mom had other sorts of repetitions that seemed to help calm her, distractions that she worked out for herself. There may be a name for this, but I am not remembering.

I agree with those who advise not to bring up a specific change in your husband;s illness unless it is necessary for his own or someone else's safety. If he is not aware of something you have noticed, it would be one more thing for him to fret about. But you could sometimes ask him in general (not in a worried way)... kneel at his feet if he is sitting in his chair, get in his face, look in his eyes, smile and ask "what are you thinking about??"... or at a relaxed time ask him "are you worried about anything?" or "if you could worry about one thing tonight, what would it be?"... that gives him an opening, a chance to talk if there is something he wants to say.

By jcoff012 On 2016.06.29 21:43
Thank you for the concern. We have always just plugged along. I love life and my family, so setbacks are temporary.

I DO have to spread some good news! I went to my cardiologist today and, after dealing with the stroke in September, my blood pressure is extremely low for me! Took seven months and several combos of meds, but hooray! Great news! Carl was ecstatic for me and we had a quiet, restful day!


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