New here / 1 month into caring for mom at home

MoniqueV2024

Hello everyone,

I am grateful this forum exists. I am 35 and my mom is 72, about to turn 73. I’m not sure which type of dementia she has, perhaps mixed, but she appears to be in the beginning side of severe dementia. It’s also worth mentioning we really didn’t have a relationship before I moved her to my city last year to help her get care after her initial dementia diagnosis. It’s been emotionally hard to reintroduce her into my life with lots of mixed feelings.

After 2 assisted living centers this past year, she fell about 2 months ago and landed in the ER then hospital. Her speech and mobility changed though her CT didn’t indicate a stroke. She spent 4 nights in the hospital, all the while we couldn’t tell if she could safely return to AL. The nurses at her AL recommended a rehab facility to get her strong enough to return to her apartment. The rehab was a nightmare, kept everyone in bed and in oversized diapers, among other issues. She spent an entire month there as we scrambled to develop a plan.

We ultimately decided to move her into our home. It seemed to be the best way to ensure she would be safe, attended to, fed healthy food, get family time (including with our dog), and more economical than costly memory care. My mom gets social security and has a small amount of money in the bank, but only enough for about 3-4 months of memory care. So I needed to try and think of ways to get funds to stretch.

what’s resulted is -

• her health and mobility has significantly improved vs her “rehab” which did more harm than good.
  
• Ive never been more exhausted. I don’t know what I would do without my husband’s support. She needs help with toileting, hygiene, etc and struggles with standing up. She gets agitated if taken to the bathroom so I have to work had to convince her to go with me to the bathroom.
  
• The avalanche of administrative tasks combined with the day-to-day combined with her hygiene reluctance makes it feel impossible to keep her presentable. For example, her body is fairly clean now but her hair isn’t. Last time the home health occupational therapist helped me wash her hair, she became angry with the OT and refused to cooperate. So I’m afraid to try again and frankly don’t have the energy.
• getting in-home help that is competent is SO hard. I’m on the 6th caregiver who is only partially helpful. But she also ruined one of my mom’s wool sweaters and broke part of her favorite bracelet in just 4 visits.
  

Anyway, I guess my question is - should I move her into memory care and take the hit financially in exchange for getting my life and health back? If she ever goes on hospice care I would be inclined to bring her back into our home so long as someone could be here for skilled nursing, which seems like it would be provided for with Medicare.

harshedbuzz

It sounds as if you need to consult an elder law attorney to sort this out. You shouldn't be taking a financial hit either way.

A good CELA can help you plan for Medicaid funded assistance whether caregiver hours in the home or placement in a MCF/SNF.

Emily 123

I agree with HB, I'd use a CELA to sort things out, and you shouldn't be paying your money for her support. I would recommend that you also look around to see if there's a good group home that might take her, as those can be less expensive. I'd also talk with her provider and see if they think she could be a candidate for hospice, as that may bring you some additional assistance.

There's a fine line between nursing care and memory care-it might be that nursing care is a better fit if she needs a lot of assistance to get up, and coverage might be easier to obtain. A CELA would know. Too, mobility is one of the deciders when it comes to intake at any facility. If you do decide to move her to MC or a group home then ask what mobility losses are a cutoff to where she would need skilled nursing. Often those are based on if she can do a one or two-person standing assist vs a lift (which is considered a nursing level of care), and if she needs eating oversight—will they supply pureed food and perform hand-feeding, or do they consider that nursing care? You can also go on your state's social services website to find what facilities are licensed for—assisted living, memory care, or skilled nursing. Each of those designations has to meet specific standards of care and staffing to be licensed. Here's Virginia's, as an example:

https://www.dss.virginia.gov/facility/search/alf.cgi

We've all fought the battle to accept meeting social norms vs. hygiene. If I could get my mom to shower once a week it was a good week. Your person can stay pretty clean and odor free with warmed cleansing wipes. There are dry and wet soapless shampoo options you can buy that work well. My mom's MC uses the wet type, and I can warm it up and have mom towel dry it through her hair. You can put a booster pad inside their incontinence briefs for added absorbency. Clothes become more about ease of use and durability—ditch the wool and other high maintenance fabrics and move to easily washed things. Jewelry gets pared down to a few things that won't get lost or damaged. (The sad truth is that eventually the meaning behind most personal items will be lost to their memory.) This is about reducing your workload, which sounds pretty high.

mabelgirl

If your life has become a sacrifice , the situation imlo is not working. I do not believe one persons life in the family is more important than the other, thus we must do what is best for the entire family. Only you and your family can make the decision about what is best, strangers can not.
prayers for finding a solution that is best for all.

sandwichone123

Right now is a good time for gathering information about the options. In addition to talking to a CELA, visit several care options so you know what's out there. Often the things we think we know about care options are out of date or based on TV, so just visiting several can be very helpful.

Home caregivers are doing the work that is normally done in a facility by multiple people (cooks, aides, managers who plan care, laundry workers, housekeeping, maintenance, etc.) who work shifts and get time off every day and week. That's why it's so exhausting to try to have one or even a few family members do the work, on top of their normal responsibilities.

Who is handling her finances now? One of the early signs of dementia is poor financial management, so taking that over for her can be very important (and the CELA can help you do that legally).