Things are rough.

dimiru · July 9

Moved my mom in a couple of weeks ago on the advice of her doc, who she used to love, but now refuses to go see. Said he only suggested because he and I were “in cahoots.” He said she needs to stop driving and let me help with meds. We “lost” her car keys during the move, but she has been obsessed looking for them for three days. She hasn’t let me close to her meds. She has an opthomology appt on the 21st, and I’ve already taken off work to go back to the town she moved from to take her. I called to find out what time (because she wasn’t) and they told me that she hasn’t had her glaucoma drops filled in a year. I made the mistake and told her that I called the doc office and what they said. She threw her phone, cursed, and went to her room slamming her door. Said “I’m not going.” And when I said “you have glaucoma” said “I don’t care!” I just learned the term anosognosia, and feel like I handled that situation poorly. I go from feeling guilty moving her, to feeling guilty I didn’t move her sooner. If she would have given up her car and let me help with meds, she may have been safer and happier where she was at. She was in a 50 plus apt and had froends. I keep telling myself that I’ll get everything situated one step at a time. This is brutal. Advice on the medication, getting her to doc appointments, and the car situation is welcome. I need words, phrases, tips!

MoniqueV2024 · July 9

For what it’s worth, the first month is hard. It feels like a year. How well does she communicate / what is her diagnosis? I found with my mom who had dementia (likely Fahr’s Disease, so a cross between dementia and Parkinson’s), the most important things I could do were:

Speak simply and repeat things when needed, staying as calm as possible
When she was upset, give her some space then revisit the topic in 5 minutes. Sometimes they need time to cool off (so do we!)
Validate her feelings - saying things like, “it must be hard” “I’m sorry, I am here for you”
For the doctor’s appt, again really simplifying when and why, and stay on topic around a singular point “it’ll be great to get your glaucoma drops! He is a good doctor” and anything that can help reduce the bigger feelings

My mom liked Starbucks, so I built in the reward of picking up her favorite drink and snack on our way to her appt. I would order ahead and she got accustomed to the routine, so instead of being so upset with me she knew she could at least get a treat.

Wishing you all of the best and here to help.

dimiru · July 9

https://alzconnected.org/discussion/comment/247657#Comment_247657

Thank you for your response. That helps hearing that the first month is hard. Maybe we’ll all adjust She had a brain scan with changes noted. Next step is neurologist which, she said she will refuse to go.

SDianeL · July 9

I got my DH a weekly AM/PM pill box and put his pills in it. I would watch him take them. If she won’t take them find out if they can be crushed and put them in her food or drink. Applesauce or pudding may work. For the doctor appt, some have fibbed and blamed the insurance company. Like: Medicare says you must go or they will cancel your insurance. I just made an appointment and did not tell my DH. Just took him. He behaved once we got there. Sometimes they do. It’s called showtiming. But she may take it out on you after. Try redirecting and distracting. Then after the appt take her for a treat. Coffee, ice cream, whatever you think she would like. Take control of the meds.by picking them up from the pharmacy or if mail order intercept the mail. It’s trial and error as each PWD reacts differently. Try to stay calm. 💜

JulietteBee · July 9

The guilt is the worse. Take it from me though, it will abate in time.

My mom wanted to "die in my own house!" Due to catastrophic health events last summer, she was brought to realize why my dh had been "bothering" her the last 5 years about living arrangements.

She has never believed in living with her married children. So, she opted to move into an IL facility rather than moving in with me.

I was riddled with guilt for months, especially seeing her cry and declaring that her move was the "worse decision" of her life.

Buy her a colorful pill organizer. One Sunday, suggest that you could help her to put out all the meds she will need for the week. Hype it up.

As far as her appointments, I'd make them and basically tell her the night before that xyz doctor or her insurance comoany said it was time for her annual follow-up.

The car is a big deal for them as it is their last means of being independent. I blamed my mom's car insurance company's ridiculously high premium as reason to stop driving, while simultaneously finding alternate means of transportation.

On those days when guilt tries to overwhelm you, remind yourself that you are doing for your mom exactly what she did for you. Keep her fed. Keep her clothed. Keep her housed. Keep her healthy. Keep her safe. God bless!

dimiru · July 9

Great ideas. I think I’ll let her find the keys. My son already told her something seems off with the brakes. I can take the car to the “shop” and hope she’ll adjust with the car gone. When we moved in, I put her laptop that she had obsessively said she needed fixed away, and she stopped mentioning it. Unfortunately, her brother asked for her email yesterday to send her a short story he wrote, which upset her because she can’t figure out how to access email. Regarding meds, my mom has used pill minders for years. She let me watch her fill them a few weeks ago, and she did well. I now realize that she can hold things together for very short periods of time, and watching her once didn’t mean anything. She’s now keeping them in her bathroom.

H1235 · July 9

When trying to help her or get her to do something I would avoid bringing up her symptoms or her diagnosis as a reason. Since she probably doesn’t believe there is anything wrong this will just cause problems. Maybe tell her the moisture in the bathroom isn’t good for the pills and they should be stored in the kitchen. When you do get her to the doctor you need to point out all these things. I found a patient portal worked best. Mom would have gone through the roof if I had said some of the things in front of her. A letter to the office may also work. I would bring up the eye drops she hasn’t been taking. She probably needs some medication to help with the anger. It can take a while go get the medication and dose figured out. My mom sometimes reminded me of a spoiled teenager. She actually said to me, I can do whatever I want and you can’t stop me. Good luck

JulietteBee · July 9

@H1235

It is indeed true that most meds should be kept away from moisture. That is an excellent idea.

It is so sad. My mom reminds me of a spoiled child having a tantrum.

@dimiru

My mom also holds it together for periods of time, often surprising me and making me think that she is not so bad. Until the fires, the "stolen items" that she moved and forgot where to, and the repetition of questions asked.

dimiru · July 9

I knew better about the eye drops and did it anyway. I guess I just needed a hard lesson. Oddly, she woke up, put her pill minder in the kitchen so she’ll remember to take them, and suggested we go to one final visit with her old eye doc before we find a new one. Cheerful, helpful. Still obsessing about the keys and said she may drive to the doc visit (over an hour away.) she has always been afraid of heights and too afraid to go up my stairs. Admitted that she took a tour of our upstairs bedrooms while I was at work. I contemplated putting a child gate before her move and just didn’t. Ugh! Her increasing dementia is coming with increased confidence. Ugh! Because of her age, we have to go in person to have her address changed on her drivers license. That will be super interesting!

Deepsea · July 9

Wow, that sounds incredibly tough. You’re doing so much, and I know it’s not easy watching her change like this. We’re here for you…..whether you need to vent, need help figuring out the next steps, or just want someone to talk it through with. You’re not alone in this.

In between here are Ways You Can Help More Practically:

1.Listen without judgment. Dementia caregiving is full of second-guessing and guilt. Just hearing “you’re doing your best” can be powerful.

2.I encourage professional guidance….Suggest reaching out to a geriatric care manager or keep up with this support group.

H1235 · July 10

I can relate. My mom was always a bit indecisive and lacked self confidence. Now she is determined, confident and not willing to let anyone tell her anything. Add on to that the anosognosia and it’s a nightmare. She lived with my brother for awhile, but he worked outside the home, so she was alone a lot. She was determined to go back to her house, to the point that I was worried she would just decide she could walk there ( with her walker). She didn’t see that anything was wrong, so she thought it was ridiculous that we didn’t want her showering, walking around outside, going into the basement, or cooking while she was alone. To be honest I think the move to Al gave her some freedom. This stuff is so tough.

weareallunique · July 10

Oh so many things to deal with and learn , seems like the more skills and abilities our LO lose the more we have to learn new ones without them catching on .

Art of the Fiblet - no one likes to "lie" but just like the Tooth Fairy saga for a child sometimes you have to - is her car gone- out of sight ? You can give her back her key chain but with a dummy key. Say the car was recalled , with tariff issues repairs will take a while. …… no Mom , not at the dealer at some manufacturer factory spot- hey it's lunch time …..

If she didn't have legal documents DPOA , AHCD, will, trust etc, it would be prudent to get her into an elder law attorney for a consult if she can still be found of legal capacity to execute the documents, If not you'd be looking at a conservatorship, which is not as desirable. Also, having her finances reviewed for long term care medicaid readiness would be prudent. Sometimes with the best intentions going in our LO still is best placed at some point.

[Found your earlier post : "Purchased a home with my mother and moved in a week ago. My adult son lives with us to save money. Very thankful for him because he is the one who gets her cable reworking every day. My mother has excellent long term care insurance, and always said she’d never live with me. "]

Did you get legal and tax advise before the purchase of what sounds like a co-owned property? If not suggest you get the transaction reviewed . Are the existing documents flexible if you need to sell and move for your career ? The attorney can also help you understand how her LTC policy works- what documentation needed to trigger coverage etc. And you need legal documents to manage your affairs if something happens to you - otherwise your son is looking at having to go to court for both you and your Mom….

I had to smile at the " Very thankful for(my son) because he is the one who gets her cable reworking every day." A LO lived in Silicon Valley and we found out that for months a neighbor - who actually founded a cable company was reprogramming their cable box at least weekly until finally they called us and said they had had it . We got a simple on /off remote and the tv stayed on one station . Even then we had to reset the box every few weeks.

Safety proof the house - both physically [chemicals, knives, heat sources ] and financially - you can't trust or believe what she says or does - have chemicals locked up, same with your financial papers. Things can disappear never to be found. Precious things. If she's alone part of the day you may want to look at cameras to see what she's up to. At some point because of wandering , behaviors, safety she will need 24/7 oversight.

Also, how is she with folks at the door or on the phone when she's alone - can she be scammed or allow access to the house ?

Guilt - no, no and no— be sad about the disease , be angry at the "design flaw " in our human brains but you didn't cause nor can you stop the progression of this disease .

So much to plan for . You found a good place with this Forum —read the posts , watch the videos , see a lawyer . Your Mom is fortunate to have you and your son watching after her .

JulietteBee · July 10

@dimiru

Do you live in the U.S? Is her license expiring? I ask because you said you have to go to the DMV in person to change her address.

I moved my DM into IL last year and changed her address online at the DMV's website.

If it is expiring & you do have to go in in-person, it maybe a blessing in disguise. They may need to test her. When they do, they can revoke her license on the spot, thereby, they would become the "bad guy" and not you.

I am glad she brought out her pill organizer and is now receptive to going back to the eye doctor. That's a win!🫂

Kristenlc1 · July 10

I am not the original poster--and I hope it gets easier for you, OP! - but wanted to say the advice here is so generous and spot on.Thank you all!

dimiru · 1:55AM

Yes, the advice here is wonderful! And I plan to enact everything. One step at a time. My evenings are mostly taken up with her tech questions. I invited the spectrum phone tech guy to move into our spare bedroom and the 3 of us had a good laugh. Getting better at the well meaning fib. Felt like gas lighting, but now realize it’s just necessary, is a kindness to her, and makes everything go so much better! My son called me at work and said “mom, I love Gran, but she’s too much for us to take care of.” And he just helps with the remotes! It’s only been a couple of weeks, she can feed, dress self, makes her bed, and remembers us. So I’m not quite ready.,

Things are rough.

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