u/Responsible_Raise_13

Wishing you all a peaceful day and many more to follow.

Moved to step 4 and then 5 today. Am very anxious and wonder how long in this stage before they decide the rating or request more information. I am hyperventilating because they moved this fast even though I believe my claim to be solid and grounded. Any ideas how long?

It is getting more bizarre than I thought possible. Sitting on the front porch this morning, my wife looks down at her feet/shoes and asks if they are hers or somebody’s else’s. I think she is talking about her shoes and reassure her that the shoes belong to her. I quickly realize that she is talking about the feet in the shoes too. She thinks someone else is there. Odd but I let it go after reassuring her that they are her feet and shoes. Later we bring our coffee out to the porch and are enjoying it. She holds up her hand and says “uh oh”. I think something is wrong and ask what is it. She says someone else is here and it is their hand. I am working overtime wondering how she could possibly think anything like this about her own feet and hand belonging to someone else. I recall seeing a tv show years ago where a guy kept telling the hospital staff that his leg wasn’t his and he wanted them to take it off. A fireman (I believe) had brought his chain saw into the ER after rescuing someone with it. Weird, but I didn’t write the story line. The guy who claimed that the leg wasn’t his, got ahold of the chain saw and removed his leg. At the time I am sure that I thought it was a dumb story line. But now, I am doubting my own sanity as I watch my wife continue on this journey. How much more bizarre can it possibly get? I ain’t even sure that I want to know.

Yesterday was my wife’s first visit with a neurologist. He prescribed quetiapine fumarate 25 mg. I am to give her a half tablet for five days and see if it works for her. If not, then I will increase the dosage to a whole tablet each day. It is to be given at bedtime or supper. It is to be taken with some sort of food. It is for her hallucinations and to help her get some sleep at night. Has anyone else here used this medication for what she is being prescribed for the same reasons? I filed the POA with the care team. They have been so good in the past in allowing me to be with her during her appointments and explaining everything for her. It was only a matter of time before I would run into roadblocks so I am satisfied that I did get it (POA) on file. But the weight of this responsibility is extremely heavy. I no longer think clearly and have great difficulty focusing on anything at all. Most of the time I feel that I am the one who should be treated and feel inadequate for the journey ahead.

Our oldest son lives about fourteen hours away. He is also listed as a POA. I run any important decisions by him as they come up. I want and need him to know everything that is going on.

Her medical team has been incredibly super. Each and everyone of them work within the same organization. They have allowed me to be present during her exams, care, and appointments. They have allowed me to explain symptoms as my wife is incapable of doing so. I knew and realized that I would eventually run into roadblocks. Yesterday I did get a POA on file with her neurologist. It is available for the entire medical care team.

My wife scored extremely low on the cognitive function test at the beginning of her appointment. The doctor realized quickly that she was incapable of asking questions or answering questions. I explained what has been going on since December 2025. It has been a very rapid decline. He said that Memantine and Donepezil is the best combination medicine to slow the progression of this horrible disease. He said if she wasn’t so far gone, that there was an injection that would help. But because of her decline, it would no longer be of any benefit. He ordered blood tests which we completed after the appointment. He also ordered an EEG. It is scheduled right away. Depending on the results, he will see her again early in September. If the test results show something, they want to see her before her September appointment. There is more that I need to post here but will do so a little later as a comment to this post. Right now I am interested in finding out if anyone else has had any experience with the new medication that is prescribed.

Recently my wife’s new thing is “Are you talking to me?” This is pretty constant. If I ask her if she would like a cold water for example, but it could be just about anything. She also confuses and interchanges a lot. She will call a cigarette a beer or water and vice versa. I know it’s the disease and have been instructed to get her to use her noodle to tell me what she really is saying. Sometimes it leads to her being upset so I bend and tell her what it is and what is going on. Is this common or normal?. It’s very frustrating.

Is there a time frame that I could expect the VA to locate and obtain a JAG investigation report? I could only give them a two year window of when it occurred, but provided details about the investigation and the results. The investigation did result in changes in operational procedures which would also aid them in locating the report. So, does anyone have any idea of how long it will take for the VA to obtain this report?

How much weight does a determination by Social Security Disability Administrative Judge have? My social security decision was very favorable and quoted a VA doctor treating me for PTSD. As well as two other doctors who wrote on my back pain. Wishing I had followed through with the VA claim right after the social security disability was approved. But I didn’t. So here I am.

Each of you already knows what I am about to say. If not, you will very soon. Caretaking 24/7 is NOT just a full time job. A full time job would be 8 hours and with breaks. The 8 hour shift would still require a couple of breaks plus a lunch break. So, one person is to be super admired for even attempting such a feat. I have finally come to that conclusion, even with 30 to 40 hours respite time.

It is much more than exhausting. It is impossible, at least for me. I have never felt so defeated in my entire life. So, if you are there and are handling it alright, I Salute You.

I have finally gotten my VA disability claim filed and have caught up with all the requests for additional information for the time being. I am sure as they review my claim and supporting documentation that they will ask for even more. And I am sure that they will schedule me for a psych evaluation even though I am sure that they know by now that I am quite insane. I do have a great case and am positive that it will be approved, eventually if not sooner because I will appeal until I can’t anymore. And I will look into getting an attorney to do the appeal process. Even though an attorney will take a healthy amount of the back pay or more, it will be well worth it as I could afford more respite.

The time it takes for the initial decision is very short. And if the attorney for appealing works only for a percentage, then he/she may drag the appeal process out to make even more money.

My heart goes out to each and everyone that has to take this journey. Those of you that are ‘sole caregivers’ are very special in my eyes. And without the respite that I just started getting this month, I would have most likely gone completely off the rails.

In the past when I read the posts from folks who had already ‘reached the end of their rope’, I felt so sorry for the patient. But please believe me, I understand now that regardless of how much one person loves the other, it can destroy the caregiver before the patient is even close to checking out.

Love and huge Respect for all of you caregivers.

And thank you all for being here. I have learned so much. This is my first trip on this kind of journey. Without your knowledge that you freely share, without the love that you freely share, I would have been totally lost and in big trouble. I thank each and every one of you.

Dreams mixing with being awake. We turned in about 8:00 PM last night. By the time we took our nighttime meds and put on pajamas, used the restroom, etc it was about 9:00 PM before our heads hit the pillows. I was exhausted and out like a light. At about 10:30 PM I woke up still groggy from sleep but I could hear my wife fussing and a bit confused. I jumped up thinking she had fallen in the bathroom and ran to the bathroom. She wasn’t there. Still groggy I located her in the living room fussing and carrying on. She had her shoes on and was ready to leave. But she couldn’t find the people who were just there she was leaving with. Her sister was one of the people (her sister provides respite when I need it). Her parents were also there (they have been dead for many years). And the rest of the people she couldn’t remember who they were. I checked the front door and the bar that we place each night was still intact. No one had been in or out of the front door. I assured her it was only a dream and that we should go back to bed. She commenced telling me that she wasn’t stupid and knew that they were here. I assured her that she was not stupid. It was only a dream. And I reminded her that her parents have been gone for a very long time. She then asked what was wrong with her. I told her again that it was the Alzheimer’s disease that conflicts dreams with reality. We went back to bed but neither of us fell asleep. Around 5:00 AM I gave up trying and started the coffee. That was about two hours ago. She has an appointment with a neurologist July 15. It will be her first. I’m hoping for a light sleeping pill so that she can get some rest. I’m sure any information will be appreciated. I will be seeing a psychiatrist for a review of my PTSD symptoms soon. Although we have had a wonderful marriage relationship, this Alzheimer’s journey has been very traumatic for both of us. I can’t be medicated for my symptoms as I am the sole caregiver. I do see a therapist but have had to cancel out a few appointments as it has brought the PTSD back to the surface and I need to focus more on my wife’s care. Things might be slowing down a bit and I can get back into the counseling treatment process.

It’s getting very difficult. Tonight when I took my wife to pee, the almost started peeing before she sat down on the toilet seat. I handed her the tissue and she claimed that she hadn’t gone yet. She still needed to pee. Where’s her peepee she asked. We argued. She knew that she had not peed. I knew she had. She claimed she is not that kind of person. I guess she thinks I am the kind now that will lie. Her really is very strange. I will be walking on eggshells now.

An article in NewsWeek gave an interesting insight on seeing early signs of dementia. Monday, June 15, 2026 written by Thomas Westerholm. The article is about Dr. Neal Shah and his observations. This would have made my wife’s diagnosis many many years prior to the official diagnosis.

Yesterday I finally obtained a POA. The scribbling my wife did to sign her name concerned the attorney somewhat, but my wife assured her that this was her decision and was not being coerced into signing and that she was good with me and her oldest son making decisions in her best interests because I love her. I am appointing my oldest son as the executor of our estate, although it isn’t much of an estate. It may grow just a bit before I check out.

After jumping through hoops my wife was denied Medicaid. They said we make too much money. So my heart goes out to each of you that qualify for Medicaid. And I considered going back to work until my wife’s rapid decline. But the good news is that we still get nurses to come in each week and check on her. And I do get reimbursed 75 % for respite care. But I do have a question. How much per hour does a caregiver make? What is acceptable?

On April 24 I dropped a Medicaid waiver form off at my wife’s doctor’s office to be signed. The receptionist and nurse there wasn’t sure that she would sign it as it was for Kentucky and they were located in Indiana. I was sure that she would. I started getting worried and inquired about it on May 4. They assured me that it was in the mail and I should receive it that week. I received it unsigned on a Saturday May 9. It was unsigned. Tomorrow I will go back to the doctor’s office and ask for a signature. I am stressing big time as the clock is ticking down. I have a feeling that they did not present it to the doctor for signature. I am hoping that I can get it signed and deliver it to the place it has to go Monday before my appointment with the VA Monday afternoon. I have PTSD and this is stressing me out big time. If I don’t get the paperwork in on time, I have to start all over again. I am stressed to the max.

This morning when cleaning up my wife after she peed, I had a hallucination. I let her wife herself and I observed. When she finished, I help her pull up her senior underwear. When I went to pull them up, I saw that they were full of poop. I went to remove them from her and they were clean. No poop. I swear I saw them full of wet poop. This blew me away as my wife has been having hallucinations recently. What is going on? Have I totally lost it? I talk to my therapist Thursday I believe. I will be telling him. I do have PTSD. But I have never hallucinated. I am very worried.

After filling her doctor in with “my wife now sees kids and adults”, her doctor has referred her to a neurologist to possibly slow down the progression of Alzheimer’s. They previously prescribed a very low dose of Xanax. It is difficult to tell if it helps take the edge off going to the doctor or if helps her relax enough at bedtime to get a good nights sleep. I am waiting for a scheduling phone call.

My heart goes out to each and everyone of you that have had to clean up the poop. I have been very lucky until last night. My wife woke at 11:30 pm and kept me up cleaning her and the messes up until 4:00 AM. At about 5:00 AM it began again. I was and am past exhausted. We ran out of attends and it got very complicated. I ended up using hand towels folded in her panties. It was still a mess. I washed clothes through the night/morning and am still washing and folding. At 7:00 we went to a dollar store to buy a supply. I stocked up. I finally gave her Imodium and relief is in sight. One of the worst days/nights/days ever. Like I said, my heart goes out to each and everyone of you that have gone through this phase. Still, I am not giving up.