Negative Nellie here

howhale · June 29

A journal was suggested for me and I nixed it right away. Another task to complete and when was I supposed to do this? What is helpful is just writing when I need to do so. I did it here and I did it privately. I had written poems for my DW from the time we met 58 years ago. I began to write even more during her illness but the tone changed as she progressed. Always with love for her but my hate for the disease, the life taken from her, the nightmare of how she must feel living her life, etc., etc. came out in later poems. I continue to write but for me when I need to release some of my pent up feelings. She went to her rest 10 months ago and I wrote as much, if not more, now to help me survive one more day. Come here and unload when you need. The people on here are lifesavers. You have to get it out so it does not fester and infect your life and health any more than it will. Purging our deepest feelings is necessary and everyone here can relate so let it out any time.

B Lynn · June 29

https://alzconnected.org/discussion/comment/276179#Comment_276179

Thank you for the kind & thoughtful response. I’m sorry for the final loss of your wife. My perception is that we lose them a little every day until they take their final breath.

Since my last post, I found that my husband’s memory has deteriorated more. Something he should have known, he didn’t. You could have knocked me o er with a feather. I guess I better get used to it. I know more losses are coming until there is nothing more to lose. I’m just so full of every emotion. Making it harder is that my health problems make life challenging for me. I need him to hold up his end & when he won’t or can’t…well things I want done don’t get done. It’s frustrating & maddening. It’s complicated because this has in some ways been a lifelong battle, too.

Anyway, I hate this disease. I hate my life. I would be happy to leave this world tomorrow other than knowing the burden it would place in our only son. Thanks again for responding with your story.

howhale · June 30

https://alzconnected.org/discussion/comment/276223#Comment_276223

I think many of us at times during the battle with this disease (yes, it is a battle with the disease, NOT our loved one. They are a victim also) feel ourselves being pulled into a place where tomorrow seems a poor outcome to face. I think we also have to find a way to allow ourselves become less focused on maintaining the standards of our life before and focus on what is immediately before us at the moment. It may mean leaving normal tasks to another time, foregoing repairs, holding back on what we would normally do because life is not normal right now. Focusing all our energies on protecting, caring for and loving our loved one sucks up all we have. It is only now that I am beginning to start the repairs needed, the maintenance of our home required, the deep cleaning preferred, etc. I had to learn that I can get to all that when all I have left is time. If it is within you capabilities, look for some part time help to give you breaks, if only to sit alone and close our eyes. I did that and found people nearby who wanted part time work and were very experienced with someone with AD but did not cost me a fortune. It saved us, my sanity and health and my wife's care did not suffer. Remember that this site is open 24/7 and I sure took advantage at the most odd hours because I need to and could.

annie51 · June 30

https://alzconnected.org/discussion/comment/276240#Comment_276240

You are so right @howhale and you have a beautiful knack for putting our feelings and experiences into words. I, too, lost my DH early this year and all those things that were put off so I could focus on him are now getting done. There will be time to do those things once the caregiving ends, but only if you keep yourself healthy enough during this battle by getting help for your physical and emotional needs.

jgreen · June 30

https://alzconnected.org/discussion/76386/negative-nellie-here

Dear @B Lynn

It has taken me a while to respond to your initial post. I can only speak for myself and say you have described how I feel most days and I thought I would only be fueling your despair. But I have learned SO very much from you and all respondents over the past week and am grateful! From your reactions I believe you are finding some support and understanding that is badly needed. As @howhale thoughtfully wrote - begin to let go of the non-essential stuff and concentrate on the here and now. Soon all you will have is the time to take care of that. (Side note - easier said than done and it is still hard for me to let go of those things that I enjoyed or gave me a sense of accomplishment. But I am doing so little by little).

You deserve a big hug! 💝

CindyBum · June 30

https://alzconnected.org/discussion/76386/negative-nellie-here

Hi B Lynn,

A little late to this thread, but wanted to offer my own experience with desperately trying to find gratitude while caregiving. Rather than rewrite what I put down in May, here's the link below. I was absolutely a negative nelly while caregiving and I came pretty close to a nervous breakdown a couple of times while caregiving. I needed something and finding gratitude finally began to work on me. It is still with me, actually, nearly 6 months since my DW died. Caregiving changed me and so did finding gratitude while I was in it. It's now my life's mission to live in gratitude. I'm still amazed that all those years of caregiving and pain and suffering happened and here I am in Stage 8, filled with gratitude along with my grief. I never, ever would have guessed that is how this would go.

https://alzconnected.org/discussion/comment/272279#Comment_272279?utm_source=community-search&utm_medium=organic-search&utm_term=CindyBum

KDSG · July 1

Hi Negative Nellie,

I really emphasize with your feelings. This is a very difficult disease and as someone said, every day there is loss. I sometimes feel very frustrated with my husband when very simple things have become very challenging and I feel so discouraged that things are only get worse. I just try to channel my inner resilience and feel gratitude that I am healthy and can hopefully stay that way.

B Lynn · July 8

https://alzconnected.org/discussion/comment/275837#Comment_275837

I could have written that, except I’m 74. This is ruining me. I’m now underweight & have no appetite, something that was never a problem until I have had to deal with a spouse with Alzheimer’s. I know it’s only going to get worse. I don’t let y mind go there. I have enough trouble getting through the day as it is. Try to stay well!🌸

B Lynn · July 8

https://alzconnected.org/discussion/comment/276310#Comment_276310

Thank you for your response. I’m happy that you have found that inner strength to draw on. I hear & can relate to your frustrations. I have no resilience as have no idea how to obtain it. Our son seems to have been born with it! I wonder if it’s something innate that some people are just born with. If so, I didn’t get that gene. Some days are better than others…I’m trying to do the best that can. Today is not one of those better days. I feel like an overwound spring. 🤯

B Lynn · July 8

https://alzconnected.org/discussion/comment/276256#Comment_276256

I am happy to hear that you have been able to reach a place of gratitude and peace. That is, after all, what I think all of us hope to achieve, especially after having to try dealing with someone with this wretched disease. Right now I feel no peace, some gratitude if I spend time to think of things I am still grateful for.

Lethe · July 9

karen

https://alzconnected.org/discussion/comment/275870#Comment_275870

karen, I smiled at your list. I recently broke my foot and ankle and my world has become even smaller. I can’t walk or drive and I was the only driver. These little daily “gratitudes” have kept me sane. Thanks for sharing.

storycrafter · July 10

It's not that "you have to think positive." It's a practice to cultivate. Start small, very simply, with something you know is do-able no matter how badly you feel.

Sometimes I first need to name and acknowledge the basic feeling I'm having, whether it's sadness/anger/fear, without judgement. The trick is - to name my feeling without evaluation; without going into a story about it. Without judgement. No. Judgement. A feeling is a feeling. Feelings come and go like clouds in the sky. Being "negative" doesn't come into it.

Then open to considering the possibility there might be a good thing. Could there be a possibility of one good thing. Make a guess what it could be. If nothing else, start with facts, with what's there physically in the five senses - I feel my legs supported by this chair; the floor against the bottoms of my feet. … I feel the warm softness of my shirt touching my arms and shoulders. … I can see that tree. It's a good thing I can see…

I can read the words people write here and make a connection that saves my day.

You are not alone. We have lots of good company …..

MamaV · July 11

I love reading all of the comments and can relate to every one. I have been meditating and living with an attitude of gratitude for years. Being happy and joyful was my MO. No more. This disease has drained all of that away. I’m always trying not to cry or crying. I do know that looking for the little bits of joy throughout the day is very helpful. Smell the jasmine and fully enjoy the moment. But it’s so hard to maintain that feeling.
This truly sucks though. It is comforting to know that I’m not alone. Reading these posts are so helpful. My therapist tells me it’s ok to rage and cry. Go to crazy town, but just for a visit. Don’t stay there.Hugs to all of you ❤️

[Deleted User] · July 11

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Abby627 · July 11

https://alzconnected.org/discussion/comment/277138#Comment_277138

He’s always, always with us. I’m forever looking for the little signs that tell me I’m not alone. ❤️

AlekoW · July 12

Every now and again my gratitude “list” has: “well, I’m breathing.” Sometimes that’s all we get. It’s somethin’…

Al2024 · July 12

I'm 87 years old and I have found that exercise works for me. I don't live with my GF, but I go to her house in the morning and we walk as far as she's able. Then every other afternoon either I go exercise in the gym or take a walk while she does her thing. Then we go swimming together (we live in Florida) and I exercise in the pool. It wears me out so I sleep good at night, which is important to me. Also I think exercise has kept my arthritis at bay.

lee jones · July 13

https://alzconnected.org/discussion/comment/277168#Comment_277168

I have coined a term similar to "zero-based budgeting," which I call "zero-based thankfulness."

I try to focus on EVERY blessing, from not having to sleep on the bare ground, to then have to stumble down to the (hopefully nearby) creek to find some clean water, to make some coffee grown, packaged, & delivered by experts in a pot that has no holes in it, if I can find firewood. Then rest comfortably in a padded chair instead of a rock to enjoy my coffee, in an air-conditioned environment with no mosquitoes. You get the drift - the same stream of thankfulness extends to dependable vehicles, smooth roads, good infrastructure put together by people who knew what they were doing, freedom to drive anywhere, etc. We truly do live in an incredible country.

Everyday you can get out of bed by yourself is a good day. I know from experience.

I keep reminding myself that things could be a WHOLE lot worse. Thank you, Lord, for all these blessings!

Negative Nellie here

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