Question for the younger caregivers

I am very close to your age, I am 54. DH is 60. We are both still working however we both think his work will be ending soon. He does not have any type of sick leave or disability leave. He is in sales so if you don’t sell you don’t get paid. Our attorney told me that when applying for SSDI if everything went perfectly it would be a minimum of 5 months before we saw any money. I work full time and carry our medical insurance. I am planning to work as long as I possibly can as I am going to have to support myself after this journey. We have our 401k accounts but not nearly enough for comfort. I do not see how mc will be an option for us due to our financial situation and my age. I do work from home so hopefully that will help!

AlzWife, for me where I'm at now in terms of in-home day care took over 3 years, so DON'T expect your going in with the possibility of getting the 40 hours I have. Long story short-I took time after two MH failures and 3 separate MC facility failures for PACE to finally agree that DW needed the one-on-one care she could not get at an MC but could get if they adapted their "Age in Place" model to provide at our home. After first enrolled in Jan/2021 in PACE (same month we won the disability claim on final appeal), if memory serves, PACE did their assessment and we were approved for somewhere around two 3-4 hour in home daycare visits per week, so roughly 8 hours, plus short respite stays at an accepting MC facility. I do not recall their criteria used, but DW was assessed to require MC level. She needed assistance with all ADLs, including toileting back in 2021. How we got to where I'm at today is definitely a one-off situation (for the PACE program I work with) but convincing my PACE program that DW required one-one-care was critical, whether in home or in MC, and it was finally accomplished in late summer/2023 and by trail. I'm giving you complete details here as its important, at least in my experience with a local PACE program, to build advocacy for hours of in-home day I knew she needed vs. what PACE was willing to fund AND that the inflexible MC system (one size fits all) approach was not responsive to my DW needs in providing one-on-one care. To begin the journey, from Jan/2021 til Jan/2023 I cared for DW at home with roughly 8 hours of daycare a week. In Jan/2023, I coordinated through PACE to place her into a local MC. 3 months later she was involuntarily discharged due to anxiety behaviors upsetting other residents, (yelling, pushing furniture, pacing, shadowing). At her discharge a meeting was held between the MC owner, myself and PACE. The MC owner was willing to keep her if she had one-on-one funded through PACE, though behaviors were upsetting other residents, he felt as I that if he had more staff to work with her/redirect, she could be safely managed. PACE (at that time) never funded that before and opted to refer to a local MH facility for medication adjustment, I did not agree with PACE but relented. Three weeks later she was readmitted back into the MC, medication switched to Ativan, no one-on-one. She lasted 4 days was much worse due to paradoxical reaction to Ativan (benzos). Failure. She went back into the MH system, different location for assessment and stabilization. three weeks later, weight loss and a Parkinson's-reaction to pregabalin they tried, out she came, much worse and weaker than before to MC facility willing to accept her, another failure. She lasted a week, involuntary discharge but directly into another MC location (owned by the parent company) which specializes in behavior-challenged dementia clients. Note: The Clinical Director of the MC facility said they would only accept her if they had additional one-on-one help 7 days a week, 8 hours per day. PACE essential pitched the idea to me that they'd fund weekdays IF I covered weekends. I agreed. She was admitted June 1, 2023. So at that time, PACE agreed that DW required one-on-one and that our current MC system could not accommodate this level of care. I do know now, that though they agreed, they didn't agree to fund all of it, and wanted DW care partner (I) to push my time in as well. After almost 2 months of hybrid MC model, me going in on weekends, PACE-funded daycare workers on M-F, no problems from the MC facility (why not, we're doing all the work and not costing them anything) but DW's health was going downhill, weight loss, horrible food, poor health care, I made the decision to pull her out of MC, period. I spoke with my PACE social worker, who'd been with me since the beginning, explained my reasons, including DW declining health, and made a final pitch to get in-home day care at home and cheaper too as didn't have to fund the $7,200 per month for MC. She had to do some checking, but eventually contacted me saying PACE agreed to fund 40 hours per week at home and in her words simply said..."she needs it (one-on-one) and we know she's going to do better at home and we want to support that". My journey to get where I'm at now isn't typical for sure. So stay connected with your assigned PACE social worker, accept the hours initially given and go from there. If you believe you need more, advocate but work within their model of care, don't burn bridges and keep your expectations in line. One thing I can definitely tell you is that PACE programs aren't a 'park and go' program. I've been told many times they really want to work with families/care givers who stay involved in the care of LOs. My PACE social worker even mentioned again to me today (when DW and I visited the PACE Center this afternoon) that our 'partnership' makes all the difference in caring for your wife. I countered with appreciating their flexibility to work with me in providing their wrap-around services at my home, that made all the difference for me so my wife gets the best care and I can take care of myself as well. Good luck!

I am in the middle of the same situation right now. For 3 1/2 years I have been fortunate to have been allowed to work from home so I could keep an eye on DH who has FTD. For the most part it worked out okay, but starting in January it was becoming more and more difficult. I knew I had to choose between work and being a caretaker. I put in for FMLA for the whole month of March, so I could see what it would be like to solely take care of DH and not work, and also to assess what our financial situation would be like if I kept working, and if I quit. Luckily, just before I left for FMLA I received a pretty nice raise, so that was a big help in my decision. Over the course of this month, I have realized that 1), I would miss my job too much, and 2), no matter how much guilt I have about placing DH, I am not equipped to care for him at this stage or the days that are on the horizon. He will be moving into a MC facility 4/1, and I will be returning to work. Since making this decision a couple of weeks ago, family and friends have all supported me and continually tell me that I cared for him much longer than most people could. That has made my decision a little easier. We'll see how I feel in a week!

I'm 54 and my husband is 65.

My intention is to get back to work. I love what I do and worked hard for my career. Last summer/fall I went through the process of getting him qualified for Medicaid. He has been allotted 40 hours of home care, but it's been a struggle actually getting those hours covered. Long story but we're on our third agency and I'm being "paid" to work a lot of those hours. My plan was to get back to work once we had help at home. My husband was placed on hospice last week, so I'm going to continue being a fulltime caregiver for the duration. I pick up the occasional project just to keep my foot in the door (not to mention the mental stimulation of working). It's weird. I feel like I'm waiting for my life to restart, but considering what that means, I'm also dreading it.

Alzwife2023,

When I am gone for the day for work, I call am and pm ( he wakes up when I leave and goes back to sleep, I make sure the ringer on his phone is on) I only go all day, once a week, so I am able to have a neighbor “ stop by” or someone else call ( out of state siblings). It is a lot of work but I need to keep working. Any other time I leave him home, I am never gone more than 3 hours. He struggles with his phone but can get by for now and he can still work the TV remote. He watches the news and weather all day long.

I know my ability to do this will come to an end soon, I am looking at options so I can keep working. Some weeks, if he is having a bad week, I go to the office part of the day and finish the day from home.

we adapt, that’s what caregivers do!