new: just venting

serena123 · September 9

Hi all,

This is my first post. Just sharing. Dad (83) was diagnosed with dementia in 2024. At the time of diagnosis, he was already in hospital due to having a TIA. The doctor cautioned he had probably had dementia "for a while" which led to a rather intense conversation and mom (73) running out of the room.

When dad was released from the hospital, my parents pretty much rejected the dementia diagnosis. They chose to prioritize their faith, so dementia was pretty much a banned discussion topic for a while. I just took this as their way of coping, though not without difficulty. Thankfully, my sister and I shared the same mindset that even though it would be great, dad's dementia is not going away. However, she does live out of state, while I am living with parents for the time being.

The journey has not been easy. Thankfully, with time, mom has since come to a place of acceptance. The difficulty however, is the fact that dad doesn't take great care of himself. He's got a bad hip. Walking is very difficult for him. It's certainly gotten worse over time. He was sent home from the hospital two years ago with a walker, he refuses to touch it. My sister bought him a pretty handsome cane, as dad has always had a sharp eye for style. He refuses to use that too. And making walking even more difficult, I imagine, are his swollen feet, for which he refuses to put his feet up or wear compression socks for. There is also the sleep apnea, for which he refuses to wear a mask. He does however take his prescribed medication to treat his diabetes and high blood pressure. Small victories...

He's not very active. His days consist of sitting in front of the TV from 8:00AM- 8:30PM. Sometimes the short walk from his easy chair to the bathroom is the most activity he gets for the day. I imagine it is probably difficult for him to do much else. Any household tasks are a no-go. When he was hospitalized, his care team recommended a short stay in a rehab facility so he could regain his strength. This did not go over well with dad, and he didn't go. In hindsight, I wish the transition would have been a little smoother. But everyone did what they could. Dad does not like to admit pain and gets a little agitated when anyone asks about his well-being, no matter how gently the subject is approached.

I am not really sure where to go from here. I know my mom (73) gets tired. She fixes all of his meals, manages his medication, tries to motivate him to get out of the house, etc etc all while working a full time job from home.

I wish there was something I could do to help the situation, though I am not sure what that would be. Mom is a registered nurse and I believe feels solely responsible for dad's health. Overall, the situation feels rather delicate at times. A friend thinks it's best I just focus on my mental health. They also suggested I join a support group. But in the interim, I wanted to post on here and just vent a little.

Thanks all for listening

galligator · September 10

Hi Serena, I am sorry you're having to manage this and completely understand your desire to vent. I just signed up for this site because I could use a place to vent too. It's a strange thing to parent your parents. And when i say out loud to the people around me what I'm experiencing with my mom I mostly get back blank stares or not very helpful bits of advice or encouragement. So I'm here to tell you: this sucks. I'm so sorry. I can only imagine what your parents are going through! It must be so hard to feel yourself deteriorating and observe that everyone around you recognizes it too. I'm so glad you have your sister on your side. I love that you two are creatively pitching ideas to your dad in hopes that one will stick. I feel sad for your mom that she is managing this and still working full time! I have no good advice for you -- mostly because I recognize that's not the point of venting! you don't need me to solve your problem -- just listen and agree that this does in fact suck. If you do find solutions that work, I hope you'll share here. In the meantime, please know that I already feel better knowing that this site has immediately connected me to at least one other person who is dealing with an impossibly frustrating situation. All my best, gal

H1235 · September 10

Welcome. Feel free to vent. When mom was first diagnosed her life was in shambles. I worked hard to get things back in order. I assumed that with more care (she had been living alone) she would start wearing the compression socks, eating healthy, elevating her legs and exercising a bit. It took me a long time to accept that I have no control over these things and the arguing to get her to comply is just not worth it. I have finally accepted that dementia is terminal and if she wants a hot fudge sundae she should be able to have it. But it’s hard. Have you heard of anosognosia. It’s an inability to recognize symptoms or limitations. It is really difficult to deal with. So sorry you need to be here.

caregiving daughter · September 10

Your dad will likely not remember nor listen to others on using his walker

I would suggest you seek out a script, from your dad's physician, for pt due to fall risk. If you or your mom could get him to a pt office once or twice a week, he would get some physical movement and even some social interaction. My guess is that he would not refuse pt exercises from a clinician. Note that I don't think the fall risk will be removed but maybe he could get a tad more stable.

I'm not recommending memory care placement; however, in case you want to understand how it works there… residents forget all the time to use their walkers. The caregivers, though, are adamant that they be used and again, residents tend to listen to strangers. If a resident is a fall risk, and they consistently refuse a walker, family may be asked to agree to a wheel chair. I know you know this but a fall would be very serious. Generally, people with dementia, who break their hip, may not be able to walk again given they'll have difficulty with rehab. The break would be incredibly painful.

Do adjust the house—remove rugs, small furniture, and any other hazards. Lower the bed, or, if necessary, purchase a bed that can be lowered. Buy a padded mat that tucks under the bed during the day, and sits adjacent to the bed at night. Don't ask your dad to use a walker, rather, when your mom sees him get up, she should bring the walker over immediately and place it where he can grab it. She should not skip a beat with her conversation or make a big deal of. Overall, he should not be moving around the house alone.

Come up with a schedule. Perhaps there can be a routine where he does sit for a couple hours during the morning and afternoon so your mom can clean the kitchen or cook, etc.

Last, you and your mom should seek education. I highly recommend you find an Alz community sponsored event and learn as I do not believe nursing education provides for training on what to expect with cognitive impairment. You will need legal, respite care, and other resources in. the future. Get ready now. Find ways to make your mom's life easier, e.g., prepared meals, meal or grocery delivery, you or your sibling pick up bill paying, or other. Pay for lawn care or snow removal. Please hang in there.

Grenah · September 11

Venting can be therapeutic, I do it all the time. I tried a support group but none of them lived 24/7 with the pwd. Yes, you have the resistance to doing activities of any kind, the ever changing landscape but at the end of the day they go home. They go out and get mani pedis, got to movies etc. We don't get that. I'm only in year two of this and it is the most challenging, frustrating, depressing, never ending situation. I've watched my mother evolve into someone I don't know. Lately she has been obsessing about the funeral of her uncle who has been dead for at least 70 years. She's waiting for the funeral director, the car to come for her etc. and doesn't want to accept that no one is coming because it happened a long time ago. We had trouble getting her back in the house because she was waiting for the car. We have pt come in twice a week so she at least will move for him. For us, no. She sleeps all the time. When we mention it to health care professionals, they just remind us that she is 97. Still. I wake her to talk and as soon as I turn around she is asleep again, sometimes snoring. I don't know that this means. Is her brain shutting down because it can't deal with what's happening? At the start that is what she used to do. She would get overwhelmed and then just go to bed, curl up and sleep.

We get it.

Thanks for listening.

new: just venting

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