Needing to vent - progression - sorry in advance for the length

shiawase12 · May 9

Hi everyone,

After a 2 1/2week trip to Japan with my stage 5 (I think) DH we're trying to get back into a routine.

I've been reading other posts here since my return, but after finding that I've been sort of ignoring my old routine of documenting his behaviors and progression I felt coming here and venting might help reset me a bit.

He is still able to take care of his daily hygene and even initiates projects around the house, but I've noticed that he wants me to help him or "do it with me" more often than not.

Installation of a Generac generator was tiring for me as I had to reexplain to him what they told me. Of course he never quite understood. Nor could he understand the different permit required inspections that came after - lumped it all together as the installer being a bit incompetent. <sigh>

Then came wanting to install a bidet toilet seat which required turning a plug from the hallway around to the bathroom. At first he agreed having an electrician do it would be best. Then I find he decided he could do it. Something that would have been easy for him in the past. After almost a full day of me "helping him" I had to resort to crying and telling him it was too much for me, that it scared me and that I really wanted to call an electrician to finish it. Thank goodness he's still always wanting to make me happy. It took the electrician just an hour to finish it. <phew>

Tomorrow a neighbor is coming over to help him do a little concrete work to finish our garden area. I had to go behind his back to text the neighbor, explain the situation and ask him to just offer to do it with him when we borrowed his mixer. Thank goodness for kind neighbors!

He now uses his laptop less and less. Glances at email, scrolls thru FB and plays two games on his phone.

He brings in the mail, but usually just hands it to me.

I guess I'm lucky in some ways. He told me himself he wasn't comfortable driving any more and that we should sell his truck. That was a while ago so I need to get that done.

He also said he can't do the astrophotography he used to do and that we should sell all of that equipment. That will be quite the task to do since it's so specialized. Telescopes, a mini observatory etc.

I'm not positive what stage he's in really. As I said in the subject line, I think early or mid stage 5. He still is aware he has Alz and lately gets angry/frustrated more when he can't do things. Has even had days where he seems quite depressed over it.

Not even sure if checking in with the doctor would help. She isn't a geriatric specialist and I guess I'm putting off all the preexplaining, explanations that I would need to do before an appointment. Also not so sure i want to try medication(s) for him as he hadn't been one that can wait, understand while we try and find the right doses in the past. He thinks after taking something once or twice he should have the benefits is supposed to give. Don't think I have the energy for all that.

One thing that gets to me is how he tells me it's hard to talk to me because he feels pressured to do it right with me. Which he says causes him to stumble on words more. That he can talk just fine with others (always talks about conversations with neighbors where I wasn't around) is always " I love you dearly, but you .." ughhh! Half the time he never had those conversation with others!

I could go on and on, but I've gone on enough. I really need to get my act together and get some counseling sessions for myself.

Thanks for listening. Hope you're all doing ok and taking care of yourselves even in some small ways each day. 💞

tonyac2 · May 10

Sorry @shiawase12, all I can say is that this disease is exhausting for both. My nervous system has learned to always be dialed up - waiting for what’s next. My DH can no longer stand/walk, so the things he can get into are limited. He wheels around the house, and occasionally carries things from one room to another and we play hide-n-go seek with them, that’s about it.
Your experience with him not wanting to drive is a blessing, glad you won’t have to climb that mountain. As he progresses, medication for behavior management is going to become a real thing. Crush the pills and put them in his food so he doesn’t know he’s taking them. That’s fair for both of you. Get counseling. This journey has changed me in so many ways, I talk to someone once a month to take the edge off. Take care.

jgreen · May 10

Hi, @shiawase12 Welcome home! I hope the trip to Japan went well. I think you are quite brave and strong to make such a trip!

I’ve seen other posts that say the stage is best determined if you can check off any one on that assessment tool. So if you see one or more in stage 5, then your DH is most likely in that stage. Like your DH, mine still thinks he can do things that he used to easily do, and yet the executive function piece is no longer working so he misses all the planning and fine details when he tries. I’ve also had to call on neighbors for help and hired a plumber a few months ago to fix a leak near our water heater. I just do it now and don’t give DH time to look for tools to do repairs.

There are some good professionals online that have videos and other teaching aids for care givers - Tam Cummings, Teepa Snow, Natalie Edmonds and Camille Sinclair to name a few. I’ve learned that dementia most often affects the frontal lobe first and the hardest. And the right lobe is where reasoning, language, planning, etc. happen. The left lobe is the emotions and that is where I need to concentrate my communication with my DH. I need to listen to him and acknowledge what he is saying - even if it is a “I didn’t know that!” Or “um-hm”, or “Sounds like that surprised you”, then maybe offer a solution or redirect. You also need to learn to pause and speak slowly and in a few words so your DH has time to process what you are saying. It may help your DH feel more comfortable talking with you.

I agree with @tonyac2 about the meds, they may become a consideration as the disease progresses. And I am on low dose anti-anxiety meds and that has helped my mood/demeanor, that in turn seems to helped my DH calm down a bit also. (His emotional side of the brain picked up on my anger/sadness/frustratiojn and he would mirror that behavior himself)

Hope this helps. Hugs to you 💝

shiawase12 · May 10

https://alzconnected.org/discussion/comment/272059#Comment_272059

Thank you so much for responding.

Even though I know everyone here is on a similar journey and totally "gets" it, it's always nice to hear directly.

I'm so sorry you are here on this journey too. I do have one question, did you start counseling earlier on? If so did you tell your LO that you were doing it? Or make up a fib? My DH is still at the point where he would be crushed knowing I was going to counseling to deal with what we're going thru. Was thinking of telling him I need it for my self image, just so I feel better about my health or something.

I'm on the wait list to get in, but who knows when that might be. <sigh>

Hopeyour day is as smooth as it can be and your hide and seek finds all that needs to be found with perhaps some laughter.

Take good care. 💞

terei · May 10

https://alzconnected.org/discussion/comment/272068#Comment_272068

As always, before discussing anything with a PWD you should ask yourself what you are trying to accomplish with giving the information. How will that information benefit your LO or make your life easier? I was my experience that except for day to day conversation, anything more complicated than that caused anxiety, fixations or other negative results. I cant imagine a positive response from DH getting that information. There are a million reasons you can use for leaving the house that should be accepted by him

harshedbuzz · May 10

@shiawase12

Regarding the question of explaining your visits to the therapist.

Understand that your DH likely has some significant anosognosia meaning that even if he knows his memory isn't great, he has no concept of how profoundly his increasing degree of incapacity impacts you. Coupled with that, emotional intelligence persists quite far into the later stage of the disease giving him capacity to experience painful emotions without the wherewithal to process them. It would be a great unkindness to explain your need to see a therapist because of him and his needs. My mom did this against my advice; she had a notion that doing otherwise might help him rise to the occasion. She paid the price.

Instead, create a work around. An excuse could be taking your glasses in to be tightened, seeing your PCP for a BP check, getting an oil change, lunch with a friend, etc.

HB

tonyac2 · 12:56AM

https://alzconnected.org/discussion/comment/272068#Comment_272068

In my situation, I had my counselor prior to my DH diagnosis. The things I used to talk about are so trivial compared to what I’m going through now. You know your DH best, tell him whatever won’t hurt him. Take care.

Dirigo · 2:00AM

I hope you enjoyed Japan, a wonderful place to travel (3X for us). You are brave to take a trip like that! My DH, also Stage 5, also has Parkinsonism, so our travel days are over. But about those home projects you described! My DH is a retired attorney, so one of the "projects" that floats into our house from time to time is a bit of legal stuff (although certainly not cases, that's all done, just someone looking for a file, etc.). Since he can no longer really use the computer or type an email, I end up doing it, often to his exasperation. While taking his dictation, If I offer a word of advice he dislikes, I get a sharp rebuke: "You're not a lawyer!" So now that's a joke around here, and when he recently offered a suggestion while working in MY flower garden, I had to say, "You're not a gardener!" He also has always loved to bet on sports. I never paid the slightest attention to that. But now that computer use is impossible for him, guess who puts the bets in? Guess who now is knowledgeable about the spread, the over/under, and other betting terms? That person is me. He has turned me into a bookie. I hope that made you laugh, just a little.

shiawase12 · 6:05AM

https://alzconnected.org/discussion/comment/272124#Comment_272124

That did give me a chuckle. Thank you. :)

I was born and raised in Japan so it was like going home for me. My sister lives there with her children so mostly it was a visit to see her. It was wonderful to be able to visit with her again.

I too feel this was the last such travel for my DH. Not that there were any infected, but it was stressful for him even though he enjoyed it.

One day at a time for sure.

Hugs.

shiawase12 · 6:16AM

Thank you for that @tonyac2

Part of my issue is that we both have the 360 app on our phones and he is still able to open it and see where I am. So I need to make a reason I'm visiting the same person/location routinely.

He is aware that I'm not happy with my recent weight gain and have a difficult time losing weight and breaking habits. So I think that's the best reason to give. That the visits are to improve myself.

I know I certainly can't and would never tell him it's due to becoming a caregiver for him.

Thank you - I appreciate you acknowledging how it's different for everyone.

Takegood care.

shiawase12 · 6:23AM

Thanks @harshedbuzz

I understand those issues. Like i said to @tonyac2 , as long as my DH still opens his 360 app on his phone and can see where i am i will need to make a reasonable reason why I'm going to the same place routinely. That won't be an issue and I certainly would never tell him that it's due to anything related to him.

For me the bigger issue right now is being on a waiting list for a counselor. <sigh>

Wellget thru this and soon be moving on to other issues I'm sure. That's one thing we can be sure of on this journey.

Thanks for sharing you knowledge.

Takecare.

Needing to vent - progression - sorry in advance for the length

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