Thank you for baring your souls

Call me Gram

Sometimes I take a break from reading posts on here, because the feeling of dread can be overwhelming. There's so much to fear of what is to come… Just when we think it can't get any worse, it does. I'm sure you know that feeling. My heart breaks for each and every caregiver on here and it cuts deep sometimes. The grief I feel is not anything I've ever felt before, and like all of you I've felt grief before, when I lost my parents, my in-laws, a sister, and a pregnancy, but this is a sorrow that is constant. There is no break from it, because we are living it.

But then, I come back to read more and realize that we are all still alive. We are muddling through, day by day. We hurt, we feel desperate, our hearts break, and we are all overwhelmed… but we get up every day and do it again. We give every bit of ourselves to our loved ones.

I come here because I want to know what to expect next, and after reading your posts I feel empathy for each of you, so I come back to see how you are doing. Then I find some inspiration in your experiences (like Biggles in her post about getting her power boat license). It makes me realize that we can still have a life, albeit a very different one than we ever imagined.

A dear friend today asked how I am managing and I responded, "This is going to happen, so I can either get on board or get out of the way. I can't change it." I'm getting on board, not only because my DH needs me to, but because I need me to. I can't keep fighting the inevitable. It is what it is … C'est la vie.

So, thank you for sharing your experiences… the good, the bad, and the ugly. I love hearing about how you play music for your loved ones, how you find joy in their laughter, how you use good old ingenuity to solve many of the day to day issues we all face. I also need to hear about the worst of it, to share your grief and to prepare for my own. Thank you for baring your souls.

trottingalong

That was such a lovely post to read first thing in the morning. What you expressed is how the majority of us view what’s happening in our lives. My husband stayed in the same stage for a very long time, but now the progression is more rapid. I have not updated his 3 siblings in a very long time. All 3 call him periodically which he loves. We have not seen the brother who lives closest to us (1.5 hours away) in at least 10 years, but he calls often. His wife was an alcoholic and decided she didn’t want to see or speak to us anymore. We never knew why. At the end of my letter I told his brother that he and his wife are always welcome. What I did not expect was a text from him that same day saying they would like to drive over for a visit. I am SO happy. I told him I am not telling my husband, but want it to be a surprise. He may not remember the visit after, but I know he will enjoy seeing both of them.

wose

I feel the same too. When I read these postings, I often cry. I suppose it’s therapeutic tears. The shear reality is often jarring but I always come right back. This is my sole lifeline. I often wonder if I’ll make it another night usually from shear emotional exhaustion. When the morning light streams thru I also cry cause I know what the day holds. My faith helps. I think it keeps me grounded and compassionate. My husband doesn’t believe in any higher power and I find that sad for him. I honestly don’t even think about any future, it’s too painful. I just try to get through each day with the least amount of turmoil. I feel validated and seen here which is invaluable to me. Everyone here propels me forward with their words of wisdom and the loving kindness that’s evident in their hearts. I too am very grateful for the soul baring. I wish I could be of more help, but sometimes I just don’t know what to say. Thanks for your post.

Jeff H

https://alzconnected.org/discussion/75311/thank-you-for-baring-your-souls

That was very poignant. Thank you for that! We are all here together.

Dan520

This is only my second post and the first one was just emojis. My wife had to retire at 57 years old because she couldn't do her job anymore due to "stress".

I bought that excuse for a while because it was in the beginning of covid and her mom has dementia. So she had quite a bit to deal with.

I soon realized it was more serious. Last Oct she too was diagnosed with dementia.

I am 39 plus years clean and sober and I believe now that I was kept alive by my higher power to take care of my wife. As frustrating as it can be at times, and I believe it will get harder, I am here for that reason. One day at a time. Sometimes, one minute at a time.

wose

https://alzconnected.org/discussion/comment/265625#Comment_265625

Keep reading and posting. We are here and we care💕💙

howhale

https://alzconnected.org/discussion/comment/265625#Comment_265625

I too wanted to believe that my dear wife's symptoms were NOT Dementia and joining with her found excuses for them. I saw them, our daughters saw them, but none of us wanted to believe it. But, it was and it lead us down a difficult path. I would tell you, however, that this site and these people are lifesavers. I only wish someone had told me sooner about this site as it would have helped me so much. However, once finding it, everyone was so kind in sharing and I learned so much that enabled me to provide better care for my dear wife. Come here as often as you can, your question might already have been asked and answers provided so use the search bar often. This site and these people are far more helpful than anything else I read, or found.

Biggles

This site is literally the life blood of my soul. Morning and night I need this site it gives me the courage and strength from everyone here to keep going. We bear our soles and share our highs and lows. Like @worse I cry so much. Another Little Fish - This morning I was surprised to wake at 6.30am with my DH still asleep in bed next to me. For months and months from 3 o’clock he has been up prowling on the hour every hour, then up and messing about at 5.30 trying to get me out of bed. I’m exhausted. This morning I could reach out and touch him in bed with me just like the old days, breathing quietly, peacefully, not troubled or torchered by life. I silently cried for what is past and I silently cried for what is in the future, but again I vowed and prayed that I could face it with him.

howhale

https://alzconnected.org/discussion/comment/265637#Comment_265637

Those moments, and they are so often just a moment, are such precious memories. When our loved one returns, for just a second, to their self before and we see them one more time as who we really know they are but now trapped in a disease. As I looked back, I now see those moments more clearly for what they were. My loved one fighting to return to me, wanting it, unconsciously perhaps, as much as I. I believe now and I believed it throughout that while this horrible disease steadily steals away their brain, their heart remains intact and strong and full of fight to love us one more time. It is those brief but cherished moments that made me a believer. The fight to care for them and survive ourselves will return again and it will demand more and more, but believe that their heart is there, knowing, loving, caring, thanking and trying, trying oh so hard, to show us. Fight, fight hard, fight fiercely, fight as if your life depended upon it, because when it is over for our loved one our fight to survive alone begins and is even worse.

backbaycb

My DH was diagnoised 6 months ago. People do not know yet he has this illness, but it is becoming more apparent. At a gathering he seems unable to tell a story any longer that isn't muddled together. It is hard to watch this go on. Yesterday I finished his story to bring it to an end. I felt uncomfortable for the others and myself. i don't know if it was the right thing to do. I wonder will aquaintences accept him better after they know he has alzheimers?

On another issue, my husband has lost so much muscle tone he is now walking with a stoop. He has always been athletic, so this is a huge change for him. We have tried PT, without any help. Back issues have been checked out too. I have read about loss of muscle tone and shuffeling.

I know I have so much to learn and appreciate any insight.

M5M

https://alzconnected.org/discussion/comment/265625#Comment_265625

Dan, welcome to the group. Congratulations on your sobriety and sense of purpose in your life. There is so much self-realization that comes along with a dementia situation!

Russinator

Your wonderful post and the great replies brought hope to my heart and tears to my eyes (thank you) one and all.

howhale

https://alzconnected.org/discussion/comment/265666#Comment_265666

I think those friends and family who truly love your husband will accept his changes appropriately once they know of the diagnosis. You should feel free to offer suggestions to them ahead of time and be available on visits to serve as the facilitator. If your husband accepts his diagnosis it should go much better. My dear wife rejected her diagnosis, anosognosia, for a long time and believed others knew and judged her and thought she was "crazy" (her word). This resulted in isolating from so many because those outbursts lasted far longer than a visit and I was the receiver. Pray that your husband dose not take that path. Once my wife progressed farther and no longer reacted, family visited more often but by then she was much less able to enjoy the visits. They were, however, able to engage to her limits successfully after understanding the do's and do not's.

My wife also experienced loss of muscle tone and mass and demonstrated shuffling at times. Someone always had to be with her when she walked. Early on she used a rollator chair backwards as a walker and did quite well, then rode in it in the hose with assistance and then back to walking with assistance. As it goes, just when you think you have it figured out, it changes again.

backbaycb

Thank you for your reply. I have so much to learn and can tell this form is a wonderul way to connect with others.

nanasharon

https://alzconnected.org/discussion/75311/thank-you-for-baring-your-souls

Well said. I feel the same.

nanasharon

Eloquently spoken. I feel exactly as you but you said it so much better than I could.

persevere

Usually I wake up early. The wife sleeps a bit but I’m usually with her when she wakes up. The other morning when she woke up she actually said my name, clear as day. Can’t remember the last time she did that. A millisecond of normalcy. I’ll take it. This site really has been a salvation.

trottingalong

https://alzconnected.org/discussion/comment/265625#Comment_265625

Always remember to take care of yourself also. Congratulations for your sobriety. I was involved with Al Anon for a few years. My first husband did not survive his alcoholism. Having attended those meetings 36 years ago, still help me today. I agree with the one day at a time and even sometimes one minute. Your wife is lucky to have you.

Biggles

https://alzconnected.org/discussion/comment/265639#Comment_265639

HOW beautiful howhale, how I needed to hear this, these fighting strong words, my tears are flowing and my strength is back.

tboard

https://alzconnected.org/discussion/75311/thank-you-for-baring-your-souls

Thanks for this. We all work miracles every day. Our loved ones did not ask for this and neither did we but we do it every day while everyone else looks the other way and leaves us alone to deal with dreadful, fatal, incurable diseases.

Dio

I was thinking the same when I came across your post. You captured this onslaught of emotions to a tee. May we all survive this to see another day.

Michele P

https://alzconnected.org/discussion/comment/265666#Comment_265666

Our neurologist placed my husband in PT for balance problems. The therapist is exceptional and well versed in cognitive issues that impact balance and walking. Not all therapists have the same level of expertise. Try and find one with more experience with dementia patients and balance. The exercises will help build muscle tone.