Venting & Update

JoseyWales

Background - I'm 53, DH is 57. Diagnosed over 5 years ago. Stage 6. I'm a teacher, we've been in person since the beginning of this school year.

DH can't be home alone. I've figured a plan for someone to always be with him, but it requires me to rush home from school. I can't work with DH around, he doesn't leave me alone at all. It's one constant thing after another. Seriously - I timed it and the longest I've had today is 6 minutes without him asking me to do something. Like helping him find the bathroom. I can't just ignore that.

My Friday afternoon person just quit. I don't have any way to fill that time. I took last Friday off, but that's not a long term solution. I feel like I'm drowning right now. I can't keep up with school and home. My head feels like it's buzzing. 

Feeling a bit better just getting that out. Thanks for listening.

John1965

Talk with your HR department and let them know your situation. They may be able to help.

French

Hi Josey. Yes I can understand. even if my partner lets me working at home, I feel stressed because sometimes I hear him going out when he shouldn’t. Is there any adult daycare near you ? If they are open. Daycare saves my life... and my children ones also. Everybody appreciates the 2 days when he is at the daycare. Even he really likes it. Tuesday and Wednesday are certainly his favorite days. He has friends at the daycare.

I am now thinking that people should think to daycare before being without any solution because it is better to go there when they still can benefit from the activities 

Oines51

I wish they had a daycare where we live. That would make life so much more bearable. I'm 53, my husband is 55. He was diagnosed 3.5 years ago and is in stage 5/6. It's emotionally exhausting to be with him all day.

Ed1937

Josey, I'm sorry, but I don't remember what county you are in. Tell me the county, and I'll see if I can find some help for you. I'm sure you have done some research on this, but it's possible that you missed something that I might find. Sorry it's so hard.

French

I know that we can think that eoad won’t appreciate to be with older Alzheimer’s at the daycare. It was my fist fear when we registered my partner who is 51 years old. Finally, he explains he is the chief, he animates the group, helps the professionals... he has a role there and this is very important. As soon as It will be possible, I will ask 3 days.

For those who live where there is no daycare, perhaps you could find one or two other families to share a caregiver who would organize activities (going to the market, having a coffee or an ice cream are also activities). Some are doing that here. Associations can organize contact with other families. The idea is not to save money by sharing but to propose to our partner or spouse a social life.

sandwichone123

It might be helpful to apply for FMLA now, so you have the ability to take off the time you need to without endangering your job. It's not a solution, but it does protect your job while you are looking for one.

JoseyWales

Thanks all for taking the time to respond.

I've called every daycare / nursing home within a 30 minute drive of my house, and they're all closed due to Covid. That's not an option now, but it's going to be my plan for next school year. I hope that by then they're open again and he'll be fully vaccinated. I actually think he'll like daycare. We used to volunteer in a nursing home for many years, and I think he'll feel like he's being a volunteer again. I am going to try to start this summer, and get him used to it a little.

Ed - I've called the people in my area (can't think of the organization's name!) to see what services are out there if he qualifies for Medicaid. They came back with a 1 time / 90 hours of in home care, but only for respite and not for going to work, and only if I qualify him for Medicaid. Everything else we don't qualify for because of his age or our income. Even if we did spend-down, there really isn't anything in my area. Part of that is because we live in a rural area.

Here's the biggest benefit of living in a small town - where I work is the most supportive place ever. I'm not worried about FMLA to protect my job. I will probably get a letter from the doctor and set that up soon, just in case I might need it, but my principal is so understanding, as is my superintendent. I love the support I get from the people I work with.

JoseyWales

Oines51 - This IS emotionally exhausting! I think it's sometimes more of a challenge for all of us with EO spouses, who are so physically fit.

French

Sorry that the daycare are closed. Here they are still open, with less people and 1 hour less. As people are now vaccinated, we will get an half hour more. Still, it is 10AM-4:30PM so that I have to find solutions before and after. I asked why not opening earlier... the answer is that the others are older and need time to prepare the morning. But I won’t complain, as there is also the transportation, it remains the best solution.

Yes there is nothing for the spouses of EO. The associations here also propose Solutions for respite... half days. But before having respite, My first need is to work. 

Yes, our directors can be very comprehensive, I could ask sick leave, my doctor would give it (she already did it 2 years ago), but we are very young, and just want to have a almost normal life... not to be locked in our house with no more social life. In my case, I also have children and I need money for them, and retirement is in 13 years... if I don’t work, I will have an enormous discount on my retirement pension. 

Unfortunately, I notice that EOAD families are not considered anywhere

MPSunshine

Hi, Josey, Somehow I remember you from when I was caring for my parents, and I thought I would respond about how daycare (we called it "The Club") was a lifesaver for our family and my job as a teacher. I did take two years of unpaid leave, one year at a time, as my dad was on hospice care and we weren't sure if my parents would relocate with us. I'm also in the field of education and I found the principal and my co-workers to be sympathetic and kind about my need to take leave. We got them settled in our home, and then when I returned to work my dad had died, but my mom went to her Club every day I was working. She loved it! They put her in charge of a language learning group, and she led a classical music discussion weekly. I would wholeheartedly recommend it. I noticed some of the guys at her Club were like ambassadors, or mayors of the place. The overall vibe was warm and loving and caring. People were so sympathetic and kind to the folks in the place that it restored my sense of humanity. I learned so much from the communication that was modeled for me by some of the carers in that place. However, my job was quite a distance away, and my situation became that a carer would have to take my mom and also take her home, get her a snack at home and put on her favorite cooking show. It was quite expensive, but the carers were very nice people and very conscientious. For me, having the outlet of work was nourishing for my soul, as teachers know, it's not only a job, it's a calling. Anyway, good luck with your decision making. I know it's not easy. Good luck. Edited to add: they had quite a few younger folks there. I believe they all had "jobs running the place." Different things, but the staff was quite creative about finding roles for people so they would feel involved and in charge.