How do you deal with the trauma of witnessing this disease take over your LO?

TrumpetSwan

It has been 10 years since I knew in my heart that mom had this disease, and that hoping her behaviors were brought about by something else no longer made sense. Before any doctor weighed in, I just "knew".

Until two years ago, I watched my dad care for her at home. He carried the weight of the world on his shoulders. My dad passed away without his beloved wife of 60 years by his side, and she was unable to make medical decisions for him or comfort him by just holding his hand. It broke my heart.

I visit my mom in memory care now, and each time I am frankly amazed she is still with us. She has COPD, heart failure, dementia, is double incontinent and is on oxygen. Her breathing is very labored. She has had limited mobility for years and gets around now by scooting her feet on the floor in her wheelchair, which is probably the only bright spot. She needs assistance with bathing, dressing, brushing teeth, getting in and out of bed, and most recently getting food onto a fork. She appears to be shrinking, and her last weight was recorded at 104 lbs.

My sister, with POA, is supposed to be signing her on for hospice soon which will bring another journey. For now, mom's daily reality is that she sits in front of her television coughing and waiting for someone to get her for meals. I sit with her and will watch an old television show and talk about her old friends. She is still able to know what is happening around her.

As someone transfers her out of her reclining chair and into her wheelchair, she moans and coughs and yells out "Oh God help me. Help me." She looks at me and tells me not to let her die. If I stand up to leave the room, she says she is afraid she will die if I leave. Her anxiety is high even though she is on anti-anxiety meds. Nothing I say or do at any moment calms her.

I go home and cannot get these images out of my head or my mom's voice asking not to die. I do several things for self-care such as daily walks, eating healthy and meditation. I still feel like the quality of my life has been impaired because these things swirl in my head. I feel doomed to go the same route and it terrifies me.

It has been 10 years witnessing an ongoing decline that keeps bringing some new horror. How do you manage the impacts of seeing a loved one with this disease? How do you still feel hopeful about your own aging in the future?

trottingalong

Boy, that’s a tough question. My husband will be 82 in March. I’m 69, I just hope I get a few good years to enjoy life again. At the same time, I can’t imagine life without him. This road we are on is lined with some very deep potholes.

jgreen

Dear @TrumpetSwan

Everything about this disease is awful! If I dwell on that too long, I get in that downward spiral - not good for me or my DH. I have to do a lot of ‘self talk’ every day to look for those little joys or moments to smile. You mentioned two - your mom scooting around in her wheelchair and you talking with her about “old friends”. Look for and hold on to those! Find pictures or old photo albums/scrap books to look at with her. Get her around in her wheelchair when you visit. If your mom likes to have her hair done or nails done help her with that.

Every might at dinner we tell each other something that made us smile that day. DH usually cannot think of anything, but I will find something he did that I can say made me smile. He always enjoys that I remembered the moment. And it helps me stay positive, even for a short while.

Keep doing things for yourself. Take care.

Hugs 💝

Timmyd

I have lived long enough to see people decline and pass away up close. Some of whom were closely related to me and some who were not. What I have taken from those experiences is that there is nothing anyone else has gone through that is a preview of what my journey will be like.

What you describe sounds like classic anxiety. It is understandable you have anxiety about aging giving what you are bearing witness to. There are many practices and techniques that can help you effectively deal with your anxiety. Getting in touch with a competent mental health professional might be a good first step.

Carl46

TrumpetSwan, I went through that with my mother and with my wife. In both cases, I was so sorry for them that I didn't worry much about myself. Now that they are gone and I am old, I get the dreads sometimes. I deal with it by trying to think about today. The past is gone and I can't correct the mistakes I made; the future is guaranteed only in that someday six men will walk slowly with me. But today, I can walk in God's sunshine and, if blessed, do some good in the world.

It helps me that I provide some care for my disabled son. Otherwise, I would probably be seeking out opportunities to do volunteer work as a hospice volunteer or some such. I think human beings need someone to worry about other than ourselves, else we go mad.

Timothy gave some good advice above, too.

TrumpetSwan

Thank you, everyone, for your helpful comments. Everything you have said makes sense. It really helps to "talk this out" with others who are finding your way on a similar road.

I went to a therapist a couple years ago, but I did not find her to be helpful at all. I felt like I knew more about things than she did, but she was only a couple years out of college and maybe instead of dropping it all I just needed to look for a different person.

Fortunately, I find comfort in my spirituality. I do not post about that or talk about it much, but others who posted with similar, thanks for that.

Blessings to all of you.

SDianeL

So sorry you are going through this. When your Mom gets hospice care they provide counselors and clergy for family members. They offer so much. Meanwhile I would ask her doctor for anti anxiety meds. I suggest a hospice evaluation sooner than later. They will help make her comfortable. Try to think of happier times with your Mom. There is a technique I used called “Thought Stopping” which helped me. You can search for it. We know how you feel. It’s so hard watching our LO decline. Hugs. 💜

TrumpetSwan

Thanks, DianeL. I looked that technique up online and it seems easy enough to do. Thanks.