Financial Assistance, and other help.

Louray920 · September 24

Hi everyone. My father was recently diagnosed with mild, beginning-stage dementia. My sisters and I just transitioned him into an assisted living facility. Physically, he’s doing well and can still manage his daily routines (ADLs) independently, but his memory loss becomes really noticeable whenever he gets tired or anxious.

Because my sisters live far away, they are doing their absolute best to help from a distance by managing his finances, coordinating with family, and handling long-distance tasks. However, since I am the only one who lives nearby, the daily, hands-on care falls entirely on me. I’m the one doing daily check-ins, offering emotional support, running his errands (like dry cleaning and supplies), and driving him to and from his appointments.

Honestly, managing all of this at the start of this journey has been incredibly difficult. I work as a care aide on the 3-to-11 PM shift, and I don’t make a lot of money. I desperately want to look for a better-paying job, but I’ve had to put my own job search on hold while I help my dad settle into assisted living and get him to his remaining appointments. Between gas and my own bills, I am deeply stressed about my finances.

I’m also really struggling with the emotional side of being a caregiver. My parents did so much for me throughout my life, and I love my dad deeply (my mother has sadly passed away). I am terrified of making him feel abandoned, scared, or alone when he gets confused. Because of this, I feel like I can't even put my phone on "Do Not Disturb" at night, out of fear that he will need someone he trusts and won't be able to reach me.

How do you all manage the emotional weight of caregiving? How do you balance being there for your parents while protecting your own financial stability and mental health? Any advice on setting boundaries (like handling nighttime phone calls) or navigating this transition would mean the world to me. Thank you.

caregiving daughter · September 24

I too documented everything and my siblings didn't give it any thought. Perhaps yours will show more empathy, however, I would encourage you to find a facilitator to hold a family discussion. Make some generalizations on what you feel you need to both start up your job search as well as provide support for your dad. Get yourself out of the middle and determine how these needs could be met. Do it before there are hurt feelings. You could use clergy, a social worker, or a geriatric care manager. You may need to pay for a couple hours of someone's time.

You then need to determine your boundaries. While my mom called me at all times of the day, she wouldn't call after her bedtime. If you father is unable to regulate his pace in the evening, and get himself to bed, a greater level of care, i.e., memory care, may be necessary. You will never be able to turn off your phone, but the peace of mind that he is receiving around the clock care may be a necessary support.

lilacgirl · September 25

My situation with my mom is in many ways similar to yours. We moved her into AL near me this past April, so I provide the day-to-day support while my brother handles more of the finances and big picture items. I also put my career on hold since December, when my father died and we discovered the severity of my mom's dementia. I am just now starting to work again.

I literally came close to having a nervous breakdown at one point. My husband was so concerned, he researched therapists and made me an appointment —- very unlike my husband! I also went to my PCP and was put on anxiety meds. It took a little while to get the right therapist and the right medication, but I am doing much, much better.

Something that helps me deal with what is truly a difficult, sometimes burdensome responsibility is I've come to think of it as a privilege. To be my mom's person, the one she trusts the most, is an honor and something I try to be grateful for, because I know she won't be around forever.

Also, this is probably the most important thing I have learned from this forum and from my therapist: I need to let go of the idea that I am responsible for her happiness, and I can't carry her pain with me all the time. If we have made sure our LO is safe and taken care of, if we let them know through actions and words that they are loved, that is the best we can do, and we are doing a great job!

H1235 · September 24

Welcome. There is so much to do in the beginning. I am my mom DPOA. I have taken her to so many appointment. The lawyer said I am perfectly fine to take a mileage reimbursement. If i bought something for mom it came out of her money no matter how inexpensive. All the little things add up. I would talk with your sister. I documented every trip with date, time, doctor we saw, location of doctor and distance round trip. I also saved a receipt for every purchase. It is not convenient, but I think it’s worth it. I would talk to your sister. As the caregiver closest to him you need to be able to be reimbursed and you should have some access to his money for incidentals.
Visiting daily is a lot. In fact, it might be too much. By spending so much time with you, he is probably missing out on activities at al. I would recommend you cut back on your visits. Block his number when you are busy vs putting your phone on do not disturb. If there is a problem the facility can contact you.

April23 · September 24

Does his AL have a transportation option for appointments so you could just meet him there rather than the back and forth? Also look into any mobile providers that you could utilize, the AL may have a list. Order whatever supplies/personal items you can on Amazon, etc. and have them delivered (or if you’re a Costco member, go once every so often and stock up). Anything to cut out having to go so often. I got my dad a small fridge I could keep stocked with his favorite drinks/snacks.

I also agree daily visits are too much and that calls should be limited and blocked at night. He has people caring for him and other residents and activities to keep him occupied, he doesn’t need access to you 24/7. He needs an opportunity to build that same trust with his caregivers. Sundowning (cognition worsening in the evening) is part of the disease but his caregivers are there to help with that.

I’m sorry, I know it’s so hard at the beginning. But you and your dad will both settle into a routine, just make sure it’s one that you can manage without it being too taxing. Your needs are also important.

If he still has access to a cell phone, he is at risk for scams so protections should be put in place.

Louray920 · September 25

Thank you for everyone's help. I just wanted to give more information and an update. With my father calling at night it just seems like he does sometimes when he has an appointment that is not a regular one for him like with cardiology or primary care. I think he gets anxious about it and wakes up in the middle of the night. I find that he needs a couple of minutes to be reoriented and he calms down and goes back to sleep. The other nights he seems to be fine. As for his assisted living place they do have driver service. I am not sure if it is an extra fee. He is a veteran and does most of his healthcare though the VA. I know they have car service but need to find out more information. If he is going to go to something like getting nails clipped, he would need someone to take him to the department because he can get wobbly when he gets physically tired.

We have an appointment with the geriatric department coming up soon. I am wondering for those who have already dealt with the beginning stages or early onset/mild dementia. What kind of questions did you ask that you think are important to ask the doctors, in terms of services both for my father and my sisters and I as caregivers.

I know that because everything being relatively new for us there has been a lot of stress. He was diagnosed the middle of this month but had been dealing with memory issues for a little while now. It was a challenge to know if it was truly dementia related due to the fact that my father was planning to move to independent living after living in his house for 50+ years. Over the past 2 years he has been updating his house, downsizing and getting rid of most of the items that he couldn't bring to a 1-bedroom apartment, selling the house, having the opening of the independent residences delayed because the construction of the new section of independent living was delayed multiple times. He was experiencing a lot of changes, sometimes at a fast pace and there was a lot of stress and anxiety. It was hard to tell how much of his memory issues was due to circumstances verses and underlying issues.

April23 · September 25

Mobile podiatry is often a service provided by AL, I would ask his place if they offer it. Another idea is a memory clock for his room. You can get the ones you can program with reminders like appointments so he can see them when he wakes up. Upcoming appointments were also a trigger for my dad at the beginning of the disease. Also I recommend making his appointments for in the morning when possible.

It sounds like your dad is pretty mobile but if he has any balance issues, you could see if he’s eligible for physical therapy, if nothing else to maintain what he has. The longer he is mobile, the better. Also if you want to try a memory medication to prolong cognition that might be worth looking into with the doctor.

H1235 · September 25

You might want to reconsider telling him about appointments in advance. This caused my mom a lot of stress. She would call and ask multiples times the week before the appointment, what day is it, what time, when will you be here, will we go to lunch, what is this appointment for again? It never helped to put things on the calendar (I think she had trouble with what the current day was). I found it best if I just show up plenty early to make sure she is ready, because honestly even if I reminded her the night before, she probably still wouldn’t be ready on time. My moms Al also had a traveling podiatrist that came to the building. As far as questions for the doctor- Do you have a letter signed by two doctors stating he is not capable of making decisions for himself. We eventually had to move mom to a nursing home and I am so glad I got that letter earlier on, from someone that was involved in the diagnosis. Mom can appear more competent than she really is and I think she has a few at the nursing home fooled.

Louray920 · September 27

https://alzconnected.org/discussion/comment/283065#Comment_283065

One of the nurses at the AL recommended that I wait for that. Unfortunately, part of my dad's issues of not being diagnosed earlier was the fact that he had a strong habit of writing down everything. He had about a million to do lists, he had his calendar book of appointments, he used to right down what he accomplished, he was diligent about checking his finances and writing down the numbers in his little accounting book. He would have a running tab of books that he read in a year. He always had a reference to go see what he did and needed to do so it was hard to see where there was memory loss. For him it seems like talking to me like in the morning or the night before to review things gives him comfort.

Louray920 · September 27

https://alzconnected.org/discussion/comment/283047#Comment_283047

We got my dad an Alexa. We created a Gmail account that my sisters and I have access to. We created a master calendar that all of us can put in appointments in that will notify him about 30 minutes before an appointment.

Louray920 · September 27

https://alzconnected.org/discussion/comment/283045#Comment_283045

Did you find that it took some time for your mother to transition in AL. Like being able to feel comfortable there?

Financial Assistance, and other help.

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