Trying to keep my sanity

shiawase12 · September 16

Hi. I'm relatively new here. My DH was diagnosed a year ago with Alz., but I noticed changes about 3 years prior to diagnosis.

I'm not totally unfamiliar with Alz. as I was my Mom's advocate in her last few years with it. She has passed, but I thank her for the practice I received ... not that anyone wants practice or any of this journey were on.

I think my DH is in the mid stage, but hard to say for sure. He has a hard time with words. When calm and rested he does better. Can't follow conversations if they are too fast, too much other noise etc.

He still blames others for most any issues he has. Yells about engineers and how they built things or changed web sites or how his phone works. Always sure they just changed ribs without any notice etc.

He is pretty clingy and often gets very anxious about me being gone for any amount of time.

I'm slowly starting to quietly take over day over day tasks. Yet he still manages to do small projects around tge house. Makes him feel useful I'm sure.

It's the constant mask I have to put on, trying to act cheery for his sake. Going along with his "issue" of the moment, just agreeing to keep the peace. Biting my tongue as he snaps at me for talking too fast, or supposedly cutting him off, or not listening to him or getting what he's saying. Always taking the blame for things.

It's exhausting. I know you understand . I just want to scream sometimes!

Everyday I get the "what do you want to do today?" So tired of feeling guilty saying I want to do nothing. So tired of having to come up with activities to keep him occupied.

I feel so so guilty when I wish he were further along so that he didn't realize a lot of what he still does.

Ughhhh! I hate this so much.

Thanks for letting me vent.

howhale · September 16

So sorry you or anyone is having to go through this nightmare with a loved one. I can relate to all of what you describe having experienced it over the 8 years caring for my dear wife. Your comment about maintaining the mask for him strikes a familiar cord. The pressure to be there, do the right thing, make their day as good as it can be, keep them safe, etc., etc. demands so much of us but we do it because we love them so much. Our path did become so demanding with me as the only caregiver for years that I did bring in additional help a few hours each day to give me a short break to recharge to "get back on duty again". Much of what we do for them often conflicts with our normal nature. Telling fibs, omitting information, making up excuses, deflecting questions, and the list goes on, is hard to accept but, in time, I learned it is for their best, not mine, and that is the goal. This site is the place to vent because we are all in there with you. Come here as often as you need to let it out, ask questions, get yourself some peace of mind that you are doing it right. I wish I had found and used this site much more but I was late to the party but, once here, found it was the only useful resource. Come on in, scream, vent, cry, hate this disease with the rest of us who also hate this disease. You are among friends, now brothers and sisters, in our world most others will hopefully never know.

annie51 · September 16

I could have written your post! I can relate to so many things you’re experiencing and feelings you have. I’m 5 years into this and DH is probably stage 6. I’ve learned so much from others here and from trial and error on my own, but every day seems to be a new challenge. I’m just glad to have a forum like this to “let it all out”!

shiawase12 · September 16

https://alzconnected.org/discussion/comment/253661#Comment_253661

Thankyou. It is good to know there is a safe space such as this with a wealth of knowledge and expertise too. So appreciated.

shiawase12 · September 16

Thank you. It feels good to be seen.

I'll have to double-check those stages. I still can't figure out which one he's in, and as others say, he goes back and forth on many symptoms depending on the day.

Take good care.

hogladyrider · September 16

OMG how I can relate to your post! My partner is the same as what you are experiencing and it is so difficult for sure. For me the toughest is that I can no longer have a conversation with him like we did before the memory loss started. I also noticed when he is tired is the worst.

Right now no one in his immediate family is aware of his situation. He made me promise not to tell his daughter or son. My mom knows as my dad passed from Alz 19 years ago and she has been my rock.

When I first joined this online community I felt like I was attacked ILO getting the support I needed. Hoping this time is different.

We are fulltimfull-time RVers for the past 10 years and I am realizing this will need to end in the near future and we will need to return to our home base and settle down.

My partner seems to have withdrawn from most outside connections and relies on me more and more and seems to get a little anxious if I am away for even a few hours he will be calling me on the phone.

I have been managing our finances now for several years. One thing that is "different" for us is that he will NOT see a doctor and I made a promise to honor his wishes. I do not need a doctor to tell me he has dementia! He will not take ANY meds.

I have power of attorney and all the other legal paperwork. This summer we are away from our winter community and I have missed my local support group of caregivers from the church I attend. I find such comfort getting with them once a week for lunch and my other friends that allow me to be me ILO of having to always be "on" and agree with him rather than start any pushback.

I often think it is harder being the caregiver than the patient because they do not realize what is happening.

I watched the Diane Sawyer interview with Emma Willis, Bruce Willis's wife. Boy I could relate as our beginning was so similar, thinking the relationship was in trouble and it was his memory. Thinking back now I realize it started years earlier. It is what it is and I am managing I do have my days when I need "me" time to rest and regroup. I have been journaling since this started and that helps.

Fingers crossed I can find some other like minded people here this time around! Thanks for letting me share and vent!

Susan

Pacony · September 16

We're relatively new on this journey, yet there are days I already feel the exhaustion you are describing. I have recently found an IRL support group as well, though they only meet monthly. I'm sure as time goes on I'll make some deeper connections so that there will be someone to speak with it needed. I believe my DH is in very early stage 3 of what will turn out to be VD as his brother experienced, and just talking about it continues to help make it real for me.

SDianeL · 4:27AM

we understand completely how you feel. Although you cared for your Mom, there may be new resources here to help you. I wonder if you read the book “The 36 Hour Day” which helped me care for my DH. Also search online for dementia caregiving videos by Tam Cummings and Teepa Snow. Caring for your DH may be somewhat different than caring for your Mom as your relationship is different with your spouse. We lose so much when it’s our partner that develops dementia. I was angry at the disease! I missed having someone to talk to and share responsibilities with. At some point, I changed from thinking of him as my spouse to thinking of him as my patient and me his nurse. It’s heartbreaking. Do you have the 7 Stages of Dementia chart with behaviors? If so look to see the stage that has his most behaviors. Some behaviors may show up in a later stage. It helped me to write down my DH behaviors as they happened and keep a list. I could then refer to the list periodically. I also sent the list of behaviors to all his doctors monthly at first and then more often if a new behavior surfaced. I did not let my DH see the list. Come here often to vent. 💜

Bridge4 · 5:07AM

Shiawase2: It’s clear that you have lots of experience between your Mom and DH. Your descriptions of the many frustrations that we must learn to deal with resonates with what I have had to learn to deal with Stage 5 DW. It feels good to read your story, especially figuring out that our lives will be easier if we just accept the need to “wear the mask”. The most haunting part is the guilt of wishing they would move further along faster (once they are deep in Stage 5 in our case), because it might ease their pain and make them more manageable for the caregiver. Thanks for sharing.

Trying to keep my sanity

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