i am 44 caring for mom with mixed dementia

kfunk · April 2

Any guidance for someone who is trying to care for a mom with mixed dementia and continue to raise a family and work full time? I can not quit my job nor bring my mom into my house as there is no room, I am trying to keep her at home but I am apprehensive with what that will entail as she progresses.

M1 · April 2

Welcome to the forum. while you may be able to get some in-home help, its expensive, and nighttime supervision will remain an issue. Sounds like you need to go ahead and check out assisted living and memory care options near you. That includes figuring out how to finance it. Have you talked to a certified elder law attorney about powers of attorney and qualifying her for Medicaid, if needed? Never too early to get that done.

Most families wait way too long on assisted living placement. By the time most here consider it, memory care is what's needed.

Anonymousjpl123 · April 2

I think it’s always a good idea to explore options. As @M1 says it’s a good idea to get both Power of Attorney and financing in place. I would also recommend visiting a few places just to see what they are like. Based on reading a lot here, there are pluses and minuses to placement and home care. A lot of it does unfortunately have to do with someone being able to be home a lot of the time. If not, having her places will mean she has more care and socialization. I could never have worked FT and had my mom at home. I’m glad you found this site - a lot of good resources here.

psg712 · April 2

I moved my mom from her home several states away to an AL near me a couple of years ago. She was definitely no longer safe to stay alone, and that factored into the decision for placement.

I seriously considered moving her in with me, as I had cared for my MIL in my home until her passing, but dementia is a whole different scenario than the typical frailties of normal aging that MIL experienced. Also depends on the schedules and needs of the rest of the family. Bottom line is we could not work out 24/7/365 supervision in our home. I work FT and still have a dependent child.

Every family has its own unique situation. The common factor is the inevitable decline. So even if you can make it work at home now, it's a good idea to check into facilities available nearby. Even if only for respite.

H1235 · April 3

Al is really not that bad. Hot meals, other people her age to talk with, a reason to get dressed everyday, activities and still some independence. I think in many cases it is the better option to inhome care. Too often people feel or are made to feel they are taking the easy route, trying to avoid responsibility by moving their lo to Al. I could not disagree more. Things are not going to get better, you don’t want to wait til something bad happens to make the move.

kfunk · April 4

https://alzconnected.org/discussion/comment/204256#Comment_204256

Thank you. I have POA of my mom and have spoken with an attorney. I have used all her savings on a SNF after several falls after needing extensive PT due to cervical stenosis. I unfortunately have to take her home on the 14th and am trying to get her approved for Medicaid through a Passport program, but overnight care will be difficult. I have thought about looking at assisted living and memory care options. It is such a hard thing to do. I feel like I am giving up on my mom.

kfunk · April 4

Thank you for sharing the side of positives with AL. I have noticed that since my mom has been in a SNF for rehab for several weeks she has gotten dressed, fixed her hair and asked for make up, whereas a few months ago she didn't even try to change her clothes daily. I do like how she has meals with a few ladies each day and talks with them, even though some of their conversations are very elaborate in nature, seeing as many around her have a cognitive decline. I will certainly take your words into consideration while navigating this situation.

kfunk · April 4

I agree the inevitable is decline. I too have dependent children and work full time. I have been told by a few people that my mom lived her life as she wanted and that I should not give up mine for hers. I understand those words but still feel bad.

wctraynor · April 4

My mom has lived with us for the last 10 years and has in the last 3 been progressing with mixed dementia. I wanted to keep her here until she no longer recognizes this as her home or medical necessity, which ever came first. I have used FMLA hours at work to be home part time and have gone through the Medicaid approval process. Luckily she had the foresight to make me POA long before her diagnosis. I think as a result of seeing how my dad was fading away 5 years ago, we got things in place legally. Now everyday, we have a little conversation about where she is and who I am and when dad is going to be home ( passed 2018). She is not upset by any of my answers just simply not retaining the info. I feel this will make it easier for me to place her in MC very soon.

housefinch · April 4

I’m 51 and had our kids in my late 30s/early 40s. I don’t want to minimize the grief and pain you feel. I have a stepdad with dementia and my mom is his caregiver for now (he will go into memory care when it becomes too much for her). I’m posting only to say that, as my husband and I face the strong possibility of 1 of our remaining 3 parents having dementia (my mom, his parents), we cannot ruin our own physical and mental health, our financial stability, our marriage, and our children’s future stability and home lives by becoming caregivers for them, too. Getting your mom into a “good enough” safe situation is ok. I have 2 children with lifelong special needs and am essentially half parent, half caregiver now. It is incredibly hard and I’m not even doing it for my parent. Sending you strength.

psg712 · April 5

You are not giving up on your mom. You are doing your best to find a safe and comfortable place for her. You will still be involved in giving her your love and overseeing her care.

psg712 · April 5

https://alzconnected.org/discussion/comment/204531#Comment_204531

Similar thoughts, housefinch, regarding the effects of in-home caregiving on marriage and kids. My MIL (elderly but without dementia) lived with us during my son's early childhood, and it was overall good for him (though stressful for DH and me with a toddler and a 90 year old at once!). When it came time to make decisions about my mom's care needs, however, the situation was much different. Among many factors that we weighed was the question of how it would affect our son to watch at very close range, in his own home, his last remaining grandparent lose her mental acuity, her ability to express love, or even recognize him. Her decline over the past two years has been much faster than we expected, and she is now in MC. We all miss the person she once was, but we have preserved for him the ability to have some normal childhood days without dementia staring him in the face at every meal. It may sound heartless, but we have to seek the well-being of both my mom and our child.

God bless you in the unique challenges that you face with your parents and your children 🧡

i am 44 caring for mom with mixed dementia

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