Sharing my story... fellow caregivers: do you also feel like you're gaslighting yourself?

Sugarpill

Hello all. It's been a long while since I've signed up for a forum. I'm happy to be here though

To start, my dad is a 79 year old Vietnam Veteran. He has quite the medical history, from type 2 diabetes to hypertension and heart disease. Everything he has is very clinically apparent... but I have suspected some form of dementia for a long time. It wasn't until a recent fall and trip the ER revealed an "old stroke in the thalamus region of the brain" and some other vascular issues. Since then, I've been stuck on the thought of vascular dementia. We finally have an appointment to get him formally evaluated.

Up until my mom's passing on April 24 2022, she was the caregiver for my father. For as long as I can remember she did all the talking for him and controlled everything. After she passed, my husband and I moved in with my father ASAP and I became his caregiver. For the first few months, I was able to work a full-time office job M-F. I have now dropped to part-time work from home, and will soon be quitting my job to become a full-time caregiver.

My dad won't eat unless I make him food and bring it to him. He won't drink unless it's placed in front of him. He has no concept of time. He won't get up to go to bed unless I am present and tell him it's time for bed. He doesn't know if/when he's in discomfort or pain. He can't articulate how he's feeling at any given time, and instead says "I don't know". When he's tired, he slurs his words and can't complete a thought. Around 4PM on any given day, he starts to sundown and decline cognitively.

For many years now, and prior to his recent diagnosis of bladder retention resulting in a catheter, he would urinate on himself and sit in it for hours. I would have to ask him to change and clean himself up. Recently, I came home after running errands to find that he had a #2 accident and was just sitting in it until I got home to clean him up.

There are days where I feel that I gaslight myself, and I'm wondering if others feel the same. Some days I feel like I am over-reacting. I don't know what "normal" or "abnormal" is for this disease. Heck, I feel like I'm over-reacting simply because he doesn't have a formal diagnosis and I've been telling myself that he has dementia all of this time. But there's no way his current everyday behavior is cognitively normal.

Do any other caregivers feel the same? Do you doubt yourself? How do you overcome and manage that?

SusanB-dil

Hi Sugarpill - welcome to 'here', but sorry for the reason.  

So sorry on the loss of your mom.  Another post is dealing with some of the same. 

What is normal for 'this' is that other than basic stages, there really isn't a standard 'normal'. 

Here are a couple of links that will help understanding the stages.

https://www.alzheimers.net/stages-of-alzheimers-disease/

https://tamcummings.com/stages-of-dementia/

Do you have DPOA and HIPAA paperwork in place?  very important.

It is probably normal to second-guess the things we need to do. How to cope? We just go with the flow of things and deal with stuff as it comes.  Don't know another choice, really. MIL has Vasc and alz, is in later stage 5, and has no filter any more, can be defiant like a toddler, and we just say that you can't reason with a cat when we find ourselves attempting to do so. We know you can't, and yet, there we go...    Mother thinks I am her sister. I let her. Sometimes I remind her of my name, that would depend on her mood-of-the-day that I sense over the phone. (She is placed, but will call several times a week.) We just know that they can't help it. and so. there it is, just going with the flow.

Your dad is blessed to have you watching out for him.

Sugarpill

Susan,

Thank you for your reply and sharing your story. I see you reply to many other postings, and I love that you are so involved here. 

When I find myself frustrated, I have to keep reminding myself "this isn't about YOU". I guess I feel like a formal diagnosis would help me understand his behavior and also what to possibly expect going forward. I would get comfort in a formal diagnosis.

Based on the link you sent, I would say he is around Stage 5. Maybe early stage 5. He can bathe independently (he isn't thorough and needs help to ensure proper hygeine) but needs me to walk with him up stairs, sit him down, help him undress, and ask him to shower. I have to be there every step of the way or he won't understand what needs to be done... He definitely cannot remember what he ate for breakfast, lunch, dinner, etc. He suffered a fall (with no injuries, thank goodness) last night. His in-home OT came by today and he didn't remember the fall.

Is there anything in particular I should discuss with the doctor when I get him evaluated? I'm not sure how they even evaluate for dementia, but I want to make all of my concerns known.

GothicGremlin

Hi Sugarpill -- welcome!  This place has been a lifesaver for me, I hope you find it as useful.

Most of the behaviors you've posted about in this thread are familiar to me.  My sister is mid to later stage 6 and in memory care now.  She has long needed prompts for eating and going to sleep.  The "I don't know" answer to "how are you feeling?" is disconcerting to me (Peggy's like that too), so I tend to ask her a million questions because eventually I'll hit upon the one that will get me an answer that I can use.

All of that said, people's symptoms are all over the map, so you'll probably come across the phrase "when you've seen one Alzheimer's patient, you've seen one Alzheimer's patient" (or words to that effect).

I second guess myself all the time. I'm always wondering if I'm doing the right things. The way I manage is a combo of two things - I read everything that looks relevant, and I have a therapist. She used to be a social worker and her experience is with Alzheimer's patients and caregivers. I see her once a month and ask her a lot of questions.  That woman is worth her weight in gold.

As for a diagnosis -- I'd bullet list all of the things you've listed here, and see what the doctor says. He/she may recommend that your dad see a neurologist. After that the doctor may recommend an MRI and/or a PET Scan.  My sister had all of these assessments done. Depending on what kind of insurance you have, these tests can be expensive.

I agree with Susan - get your durable power of attorney in order, medical and financial. You'll need that for just about everything you do on your dad's behalf.

Nutty623

Hi, yes, I feel like I doubt myself. I think all the caregiving shouldn't be such a big thing to complain about. I focus on one activity at a time  and dismiss how much that thing is an aggravation but then realize the accumulate a tivities might be too much  ....but then again, no?

Martin Robbins

It seems, Sugarpill, that you need a doctor to order home hospice.  You need that sort of help, at least.

Don't think there is anything chiseled in stone, so to speak, about ordering hospice.  It's a judgement call on the part of the medical doctor.

God bless you, for caring.

Silkifae

Hello. I just joined this forum today and reading others struggles has helped me not feel so alone in this. Both my husband and I just retired last December 31st. My 73-year-old husband had memory issues for about a year and a half before I could persuade him to see our GP. That led to him seeing a neurologist in May of this year at which time my husband did well enough on the 30-point verbal/written test that he was diagnosed with Mild Cognitive Impairment though I did feel he was a little further along than that. He was ill in August and his behavior was off the chart. As he recovered he returned to almost his baseline cognition, but not quite. At his 6-month f/u 3 weeks ago, he did about the same on the 30-point test. I described the increased behavior abnormalities and requested imaging of his brain so we know what exactly we are dealing with. He had a PET scan of the brain w/contrast. The result is Moderate-Stage Alzheimer's and have started him on donepezil. I hope it levels him out a bit. In reviewing the different stages, I would say he is between 4 and 5. This week he had blood work and a checkup with his GP and he is in excellent health physically. 

His sundowners is now beginning at about 2 pm and continues until he goes to bed and is there when he wakes in the morning though not as severe. There have been a half dozen times that he doesn't think I am his wife; usually thinks I'm his sister and 1 time I was our youngest daughter. He asks where his parents are living now (they passed away 16 years ago). He thinks one of his brothers will be coming to stay overnight and wants to leave doors unlocked so they can come in. His OCD is off the charts and once he gets focused on something he has a crocodile grip on it and won't let it go. I try re-directing which often doesn't work. I try to go with his flow, but my problem is when this or re-directing doesn't work, I don't know how to answer his persistent questions to his satisfaction.

Knowing what was coming, I made an appointment with an Elder Care attorney and updated our POAs, Health Care papers, Family Trust with me being the sole trustee and my daughters being trustees if something happens to me, etc. I have sold our property and we will be moving to a house in the independent-living area of a local nursing home campus. This is not what I imagined our retirement years would be, but I remind myself that no one knows what tomorrow will bring. I try to remind myself to look for the moments of joy that might happen during the day as I know things will progressively worsen and those joys will probably become nonexistent. 

I wish everyone all the best and hope your Thanksgivings were as pleasant as possible.

Wilted Daughter

To answer the first two questions: YES! and YES!

To answer the third: I don't know if I have overcome, but I learn from each situation (as mom progresses in her illnesses, I progress in knowledge/management).

I like how you used the word, 'gaslighting' as it completely descriptive of my experience/feelings. I work myself into a state of confusion while my mom just looks at me. LOL

I don't know if there is any real management of dementia, other than acknowledgement/acceptance...make common sense decisions. I too, tried to get complete diagnosis/work up for everything and in hindsight I was ceasing my tail. What I have learned is to just let some things be...play out without interference/control (this is difficult for me a fixer). If my mom needs more help, then I reach out to resources for more help (develop a team). You can't do it all and researching/knowing the resources in your area before you need them is good proactive management.

Best wishes!

jfkoc

Dementia can becaused by many things many of which are treatable. Please google dementia diagnosis and be certain all steps are taken for your loved one.

A diagnosis is important also to try to pinpoint what "kind" of dementia since drugs are notone size fits all.

Iris L.

To those who use the term "gaslighting":

You are frustrated because your prior experiences do not explain what you are dealing with now.  This is because dementia is unlike other disease processes.  Also because PWDs have anosognosia.  They are not going to come to you and ask for help, nor will they acknowledge that they need help.  You will have to learn work-arounds in addition to everything else about caregiving. 

Read a lot of threads.  Learn from the members.  Also, don't wait for a formal diagnosis before you educate yourself.  Once you know more, you won't be gaslit.

Iris L.