Dealing with the soul-sucking nature of witnessing this disease

TrumpetSwan · June 8

I guess somewhere along the line I read that your LO with AD becomes somewhat unaware of how much they have actually declined. The unawareness protects them from fully realizing the impacts and the toll it takes. For those around them however, we do see it. We are aware of it. We also deal with the reality of watching ongoing issues unfold that we cannot stop or cure. We feel the impacts of that.

What are your coping strategies?

How do you get the images of your loved one struggling to even talk out of your mind? How do you prevent it from occupying your thoughts? Your life? Your energy?

Sometimes it seems this is just an endless black hole.

Thanks.

M1 · June 8

I agree that’s what it feels like many times. I don’t think there’s an easy answer. This forum helps me cope. Trying to exercise regularly and keeping up with my garden helps. Age and other responsibilities play into it: it’s a relief to be retired and not have work/other family responsibilities. But sometimes a distraction would be good. I personally have not sought individual therapy or grief counseling yet, but many do.

It’s easier for me because I was so fortunate to have such a loving relationship with my partner and I can bear anything because of that. I would go to the ends of the earth for her. I feel for those who have to take on this role without that motivation. I think each of us has to find our own things that work. It’s very hard because it is sooo prolonged.

SDianeL · June 8

It's heartbreaking & terrifying. No easy answer. This forum helps. Staying busy helps. Seek professional help if you are overwhelmed. Just talking to someone who understands helps. Sending hugs and prayers for you.

drsd112 · June 8

Yes. Some days I too feel like I'm stuck in the middle of a long dark tunnel with no light at either end.

These forums have been a great lifeline for me. There are a great number of wise, caring and understanding people here. Reading their stories and advice has helped me greatly.

For me, just finding respite a few minutes at a time helps (small steps, little victories). Listening to music, going for a drive or taking a walk around the neighborhood. While it doesn't lift the burden for the full day it helps for a an hour or two here and there. I also like to cook to relax so making a favorite recipe or trying something new can also help me.

Yesterday I turned off my phone and left it in the house, went out on the back patio, collapsed into a chair and for about 90 minutes just listened to the breeze rustling through the leaves and watched the birds and squirrels carry on with their daily routines of life and survival. It reminded me life continues, regardless of how difficult things may be for me and my LO right now. It's easy to forget that, when you have an LO with dementia or AD.

I have not sought therapy yet but am considering it.

I hope you can find a few things, even if it is just for a few minutes at a time each day, which can help ease the burden.

ButterflyWings · June 9

Honestly, I try not to think about it, but that is hard as dementia is such an "in your face" disease. This forum helps tremendously. Connecting, sharing information and giving and receiving support. 24/7 caregiving at Stage 7 is hectic after a fairly easy time during much of Stage 6. So, most of the time I am too exhausted to reflect on the heavy reality and what next. I'm just getting through the next task pretty much, and trying to be grateful for the smallest of blessings since our time together is drawing to a close.

Speaking of their inability to perceive their deficits (anosognosia) DH can sometimes gather enough words to express himself and he said today "I feel bad", when I asked if he was OK. I didn't say "you look even worse, my love". But that is what I was thinking. If he could see what I see, I imagine it would terrify him and break his heart. So I try to be strong for him, grin and bear it as my mother used to say, and take pride and joy in giving him whatever small comfort I can provide.

I remember the saying, "Love is a verb". That is what keeps me going right now. Loving him through this storm the best way I know how.

fmb · June 9

@ButterflyWings I am right there with you, with tears in my eyes. Seeing my DH's shrunken face and hands is almost more than I can bear at times. I just try to sit with him, hold his hand, and simply be there, taking in as much of his presence as I can in the moment, knowing that he will be lost to me forever all too soon. How naively we say the marriage vows, having no idea what love truly is until we are forced by cruel reality to reach so deeply into ourselves and offer all the strength and compassion and love that we never knew we were capable of.

GothicGremlin · June 9

@TrumpetSwan It's soul-sucking, no question about it. And an endless black hole …. yeah, that too.

My sister passed away a few months ago from this disease, and I'm only just now beginning to feel more like myself.

I had a lot of coping mechanisms while she was alive though. Working out at home/at the gym all through this nightmare helped me a lot. I took up boxing and kickboxing, and just the act of punching a bag felt so good (still does).

As soon as my sister was diagnosed, I got a therapist. The woman I chose has a background working with Alzheimer's patients and their caregivers. She almost always had answers to my questions about the progression of this disease. Sometimes it wasn't what I wanted to hear, but even so, it was always something that I needed to hear.

When I could, I'd go to my goth club and dance for a few hours - but that's just me. 🙂 It was always good to see "my people" and remind myself that Alzheimer's isn't everywhere. I'll just add that I was only able to go anywhere at night once Peggy was in memory care.

How do you get the images of your loved one struggling to even talk out of your mind? How do you prevent it from occupying your thoughts? Your life? Your energy?

I never really succeeded in any of these. Sometimes if I was doing something intensely physical that required all of my attention at the gym, I could push Alzheimer's away for a bit, but everything Peggy was going through was always at the front of my mind. There was never a time when I felt like I was "off duty", even when I managed a night out at the club. I always had my phone with me and I'd check it frequently just in case Peggy had a fall, or if her facility needed to get in touch with me for some reason. Sadly, I think it's just the nature of the beast.

DTSbuddy · June 9

I try to see it a series of hurdles, of challenges for which I can sometimes find better approaches. For example,. getting him to shower before dinner instead of after has helped. Tomorrow will bring new surprises, and I need to sleep when he does so I'm ready to cope. Most difficult job I've ever had. Butterfly wings, thanks for these phrases: "take pride and joy in giving him whatever small comfort I can provide" and "Loving him through the storm." Best of luck to all of you.

MN Chickadee · June 9

Your title pretty much sums it up. It is indeed soul sucking. It's mind-blowingly unfair and bizarre how the PWD slips away and becomes unaware of their disease and limitations and we are left alone witnessing the whole thing. I feel like the second half of mom's Alz journey was some kind of time warp. Years filled with darkness, grief, and fatigue. When she passed away it was so hard on me, but also a new beginning. I finally feel like I am somewhat healed and recovered 2 years after her death. A silver lining to being in the "sandwich generation" - meaning a younger dementia caregiver with children at home- is I'm able to immerse myself in this phase of life now and appreciate life in a way I didn't before the dementia experience. There was no off ramp, no easy out in the throes of the journey. Support groups helped to not feel alone. Therapy and talking with friends. But mostly you just get through it. Virtual hugs to you.

TrumpetSwan · June 10

Just wanted to thank everyone who posted. I guess just acknowledging this aspect, and not denying the impact it has on us, is helpful. Also - a big yes - this forum helps a lot. Thank you all for being here and for sharing.

SusanB-dil · June 10

We also try not to think about 'this stuff' so much, but true, you really can't help it. As the other poster said, it is in-your-face.

Meanwhile - we have a few hobbies we work with. At least with my handcrafts, I can still do them while watching out for MIL. Get my mind off things for at least a few minutes here and there.

Anonymousjpl123 · June 11

I try for moments. I really love what drsd11 said about the hour or so here and there taken for peace and restoration - that’s what we get.

I’m often on automatic as I work full time, visit my mom at least 1-2 times during the week and both days on weekends. She’s always in the back of my mind. My siblings’ support helps a ton: they are not directly involved in my mom’s care, but having their full support has been a godsend.

But it’s funny - my sibling said in the beginning “you know, even though I’m not involved, every day it’s like there’s something in the back of my mind that I know is not right.” I think that’s how this is.

I try for moments - we can still have times together where we are happy. I know they won’t last, but I hold onto them. I love what @drsd112 said:

Yesterday I turned off my phone and left it in the house, went out on the back patio, collapsed into a chair and for about 90 minutes just listened to the breeze rustling through the leaves and watched the birds and squirrels carry on with their daily routines of life and survival. It reminded me life continues, regardless of how difficult things may be for me and my LO right now. It's easy to forget that, when you have an LO with dementia or AD.

This feels so spot on to me.

katieea · June 15

I recently joined this forum. My significant other is much older than me and is dealing with serious health issues, including a recent diagnosis of Alzheimer's. While it's comforting to know I'm not alone in these struggles, it doesn't make the sleepless nights, stress, and constant sadness go away. I live in a remote area far from family, so there's no one to talk to, and my local friends have their own problems. I feel guilty for wanting it to end when I know there's only one way that can happen. I've always been practical and cheerful, but I can feel myself slipping into a self-indulgent depression, crying a lot, and occasionally losing control in front of my partner, who has always been there for me and deserves better.

dancsfo · June 15

https://alzconnected.org/discussion/comment/212857#Comment_212857

Welcome to the forum. Since you are in a remote area from family, perhaps this forum can give you some of the support and community that you want. The members are experienced in caregiving during different stages and are understanding. I hope participating will help you and your significant other.

M1 · June 15

Hi Katieea and welcome. I also am significantly younger than my partner (15 years) and live in a remote area with no close family-I have grown children who are moral support but not practical support. Sounds like we are farther along than you are, but I second the suggestion that this forum can really help. It’s kept me going through four very tough years with little other help.

JDancer · June 15

https://alzconnected.org/discussion/comment/212168#Comment_212168

I understand the feeling of never being off duty. IMO even if you don't provide care 24/7, you're still a 24/7 caregiver. Dementia never sleeps.

fmb · June 16

@katieea Like you, my DH is much older (92 vs. 63) with ALZ (Stage 7) and other co-morbidities. Other than DH's daughter who visits him at the AL facility once a week for 1/2 hour, we have no other relatives to help ease the burden. While this forum is no substitute for in-person, boots-on-the-ground help, it is a good place for information, advice, and to vent, rage, grieve, or cry. Do not hesitate to seek counseling (online, if no one is available in your area) for the depression. And no, depression is not self-indulgent. What you are feeling is not unusual for caregivers as we struggle to manage our loved one's care while processing all the emotions we feel.

katieea · June 16

https://alzconnected.org/discussion/comment/212871#Comment_212871

Thank you for your support. Yesterday was a very bad day, today a little better, and I'm trying hard never to think about the day ahead. We have an appointment with the neurologist this week but it seems a little pointless. A very early start, a long drive to get there and nothing she can offer anyway; but I know our doctor would be upset if we didn't follow up. What a nightmarish roller-coaster ride.

M1 · June 16

Katieea I think you have every right after this visit to decide whether the neurologist has anything to offer or not. If your DH is having behavioral problems, discuss them frankly- there are medications that can help. Some neurologists are more willing than others to prescribe these. If yours is not, ask for referral to a geriatric psychiatrist. They can be more help than the neurologists in advanced disease. You don’t have to keep going back for pointless visits.

Dealing with the soul-sucking nature of witnessing this disease

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