To poster providing care for a DD with a cognitive disability, have you applied for a Developmental Disabilities Waiver in your state? Is it possible for your DD to participate in an adult day program? We have a DD with an intellectual disability who resides with us and things are going smoothly right now as she is out in the community working and volunteering on a part-time basis, but it does involve driving her as we do not quite trust paratransit with Covid as yet. The issue we have is the long-term planning for the three of us as we age as there is not opportunity for her to move into a CCRC setting in the future as we may need it. For her in the future when she is really older, an assisted living setting with a lot of activities might be appropriate, but she would not meet the age range of usually 55+ for quite a few years.

She has, in fact, just been approved for an in-home support waiver which at this point we do not really need except for the Respite part as I have been used to setting up her routine for several years since post high ended. However, we know we need the funding for in-home as we grow older and for adult day programming, especially if she transitions to the home of one of her sisters. For anyone who is a caregiver, it is very important to give yourself free time without any guilt. If you are a couple then make sure each has time "off" and also if you are a woman, make sure that the usual home care tasks do not just fall to you. Get help in the house even just once a month with the heavier work. Have your husband learn how to cook, shop, do the laundry and run the vaccuum. At the same time be sure you learn how your finances are set up, bills paid, where the important papers are if something happens to him.

For seniors, consult the local Office on Aging to see what day support services, financial grants for respite care and/or day program might be available. Also contact local senior centers/Alzheimer groups to see if there are free support groups meeting some with sitting for the client.
As mentioned in other posts on this site do the research ahead to see what services for assisted, memory and skilled nursing are in your area and the cost. If possible, sit down and get an idea of your parent(s) financial situation now and consult appropriate professional help to make the best decisions in future planning for them possible to your situation.

I don't have answers. I placed my dad in an assisted living facility and I still struggled balancing everything. I wish I would have taken FMLA.

Anonymous wrote:

Anonymous wrote:Do you have any siblings that could also help with the overnight coverage? Could you move your mother to your home? I found the running back and forth to be overwhelming and exhausting. Can your mom live safely by herself? This is hard and I am sorry for your situation.

My sibling will spend one week per month here so that we can get a break. I own a small two bedroom condo, there is more space at my parents home. She can stay home alone for a few hours but we don’t feel comfortable having her alone longer than that. She no longer is supposed to drive.

This can decline rapidly. It just takes a fall, a need for anethesia, even a bout with the flu or covid for some or a mini stroke. People now live for years and years in terrible shape. Think long term.

Anonymous wrote:Do you have any siblings that could also help with the overnight coverage? Could you move your mother to your home? I found the running back and forth to be overwhelming and exhausting. Can your mom live safely by herself? This is hard and I am sorry for your situation.

My sibling will spend one week per month here so that we can get a break. I own a small two bedroom condo, there is more space at my parents home. She can stay home alone for a few hours but we don’t feel comfortable having her alone longer than that. She no longer is supposed to drive.

Anonymous wrote:

Anonymous wrote:Do you have any siblings that could also help with the overnight coverage? Could you move your mother to your home? I found the running back and forth to be overwhelming and exhausting. Can your mom live safely by herself? This is hard and I am sorry for your situation.

I would not suggest moving her into your home, but we have challening parents/inlaws.

I like the idea of looking into a sustainable living situation now-continued care. You will burn out fast trying to cover this on your own and we truly found aging in place a nightmare, even with services. Start researching places and get your siblings on your side with this so they don't undermine. If they refuse, let them take over and see what it's all about. You need to think long term and you want her somewhere if this rapidly decline say post fall, she has the right setting.

This. I have watched my two siblings burn themselves out trying to cover my mom 24/7, 365 days a year for the last 5 years. DH and I and a full-time aide cover my DD with a cognitive disability 24/7, 365 days a year since she aged out of the school system. It is unsustainable and you will end up burnt out and highly resentful.

Anonymous wrote:Do you have any siblings that could also help with the overnight coverage? Could you move your mother to your home? I found the running back and forth to be overwhelming and exhausting. Can your mom live safely by herself? This is hard and I am sorry for your situation.

I would not suggest moving her into your home, but we have challening parents/inlaws.

I like the idea of looking into a sustainable living situation now-continued care. You will burn out fast trying to cover this on your own and we truly found aging in place a nightmare, even with services. Start researching places and get your siblings on your side with this so they don't undermine. If they refuse, let them take over and see what it's all about. You need to think long term and you want her somewhere if this rapidly decline say post fall, she has the right setting.

If she needs overnight care, there is no way for you to do that AND work at your job. You will need to hire another caregiver for the overnight shift or move her to a residential facility.
I'm sorry.

Do you have any siblings that could also help with the overnight coverage? Could you move your mother to your home? I found the running back and forth to be overwhelming and exhausting. Can your mom live safely by herself? This is hard and I am sorry for your situation.

Is Assisted Living an option? I know that your father was taking care of her but he was in a different stage of life than you are, and circumstances have changed.

How do you all who are caregivers keep from falling apart? I have suddenly shifted my whole life due to the untimely passing of my father who had been taking care of my mother. I’ve hired a home health aide for the day but I’ve uprooted so that we can spend the night with mom. I went back to work recently and I really don’t know if I can do this.

Help!