She has no assets except social security. She can’t remember anything. Asks same thing repeatedly. Has sundowners. We called council on aging re: applying for Medicaid. They said she would likely be denied because she can get dressed, brush her teeth, and feed herself. My spouse seems more patient than me that “things will figure themselves out the way they are supposed to”.
It’s impacting marriage. She’s nice and quiet but very much dependent on us. Just exhausted from not being able to leave her overnight nor for more than a few hours after she is downstairs and set up with the tv on, etc. I don’t want to sound like I am a mean person. I would rather plan if possible instead of waiting until she is in dire straits. Any help is appreciated. Thank you!
Most people with dementia tend to do better with a consistent routine in a consistent environment. Change is difficult for them. Try to set up a consistent routine for your loved one and keep the areas she uses as consistent as possible. Routines also help others who care for her to know "what to do and when to do it."
Check Social Security Administration online for qualifications for Medicaid. If your loved one qualifies, set up an appointment to get her signed up. Make sure to have all supporting documents at the appointment.
Check with your local Veterans Assistance Commission.
Or you can contact the VA in your area.
I hate to disagree with the assessment that she can carry on ADL's
She may be able to get dressed, feed herself and brush her teeth but those are not the only ADL's that they should consider.
Can she shop, prep a meal, cook a meal, clean up?
Can she carry on housekeeping, laundry, cleaning?
If you or your husband are helping her what would happen if you were not there to do what you do for her?
The problem with this attitude is that you are just adding to the already overwhelming backlog.
However, until you file and get rejected, you won't really know what is preventing her from being accepted into Medicaid.
Also, you need to be careful with what you consider successful ADL.
My mother could wash herself, however she needed help with turning the water on and off, and had to be watched getting in and out of the bath area. She did not wash herself completely (partially because she could not reach all the areas). In addition, because we live in a warm climate, she could just put on her Depends (she couldn't bend down and put them on herself) and work on the other parts of her routine. By the time that was done, she was "air-dried". Yes, she bathed by herself. However, she could not complete the task without someone being there. Depending upon who it was, some people considered her able to bathe herself and others said not able to bathe herself.
Yes, she can feed herself, however does all her food have to be in bite size pieces because she doesn't have the strength to cut her food or cuts her pieces so large so that she tears at the food once she takes it to her mouth? Does she prefer to use her hands instead of a fork, knife or spoon? Are you unable to take her to a restaurant because she would make a mess like a toddler around her?
My opinion is to consult with an elderly attorney or with any of the people who help fill out forms for elderly Medicare and turn the form in. If you get rejected, at least you will know why.
P.S. Medicare does have a home health care benefit. It isn't much, however, it might provide you relief for some part of the week. Her doctor would have to authorize it.
There might be an adult day care where she can spend some time during the day. I don't know what the pricing might be. Some do drop ins too.
You could have a senior companion (often the word angel is in the name: visiting angels...) give you a day or night or whatever off when you need it.
Are there other family members who can help out? My husband is my MIL's only relative, but is that your situation too?
Unless something else takes her first, she will probably have to go to some type of care. She could get delusional, paranoid, combative, and completely uncooperative.
There are programs that can help with in home care. We have one here called IRIS, but I believe there is something similar in every state. She can choose whoever she wants for caregivers (including family). They will provide the funding for not only her care, but things she might need in the home and outside therapy or activities.
Here is a little convo to have with your DH.
DH, I think we should hire a caregiver for MIL.
Instead of having to pay the caregiver, we could let her live here in exchange for her services, of course, she would need to keep the place clean.
We could throw in three meals a day and let her buy the groceries and do the cooking. We will have to pay for the groceries. MIL could go with her, she will enjoy the outing. We will let her use our second car if she is a licensed driver, strong enough to get MIL in and out of the car and can get back here before the ice cream melts or MIL has an accident.
She will need to be a good planner, make sure MIL doesn’t get too tired, has her meds on time, gets her potty breaks, is especially observant during the sundowners.
She will need to keep a tight calendar to work the doctor appointments in around her other chores.
We will have to make sure this caregiver doesn’t want to have friends over or celebrate holidays here or visit any extended family as that would be too disruptive. After all, she could plan all that and then MIL have a bad day and the caregiver probably wouldn’t have time to visit anyway.
She needs to be a light sleeper so she will hear MIL when she needs a potty break during the night.
She won’t be able to take any time off as MIL needs daily care, no sir, this is not a 9-5 job. it will take a special person to do this job.
This caregiver is going to be so happy on the job because MIL is nice and quiet once all her needs are met and the tv is on her station, etc. etc.
Thats when the caregiver can rush to get some of the household chores done in order to earn her room and board.
I sure hope she’s not one of those planners or gets overwhelmed. we need to make sure she will realize that “things will figure themselves out the way they are supposed to.” Or we will just have to replace her with another caregiver who isn’t so mean. 🤨
What’s that DH?? The job is already taken!! I guess I missed when that happened.
So how much actual hands-on caregiving work is HE doing for HIS mother?
Give the "things" a jumpstart in "figuring themselves out" by taking a trip somewhere by yourself. The "things" will quickly be kicked into gear to start making changes once they realize you are NOT part of the solution!
1) Why in the name of Heaven did you ever allow her to move into your house? Major mistake # 1, as most everyone here will tell you.
2) Having made the first, and biggest, mistake, WHY did you not have a big sit-down discussion with your husband, clarifying that it would be HIM, not you, doing the nannying of Old Mom? (Actually, it should not have been a discussion, but a firm declaration: “She is yours to deal with. Period.”
3) Having failed to do the first two things, why are you still dithering? Ultimatum time. SHE goes (into some Medicaid place; others here are right that it is an income thing, not a can-she-brush-her-teeth thing), or YOU go.
Grow a spine!
Has your MIL been formally diagnosed with dementia by her physician? If she has that, I don't think you will have a problem getting her eligible for Medicaid and placed.
Speak with a Medicaid specialist and see what they think will push the process forward. Once your MIL is approved you will be able to breathe a sigh of relief.
I would even start researching facilities in your area. Your MIL isn’t a fully independent woman. Her situation will become worse, creating more stress for your family.
What resources have you looked into other than Council on Aging? How about seeing if there are adult daycare programs that she may be able to attend for a few hours during the day?
Perhaps you could hire someone from an agency or seek out a private caregiver to stay with mom on a regular basis.
Best wishes to you and your family.
The ability to bathe, dressing, toileting, transferring (getting in and out of bed or chair), eating, and continence.
Your MIL does not have to fit all of the ADLs. Dementia alone and needing 24/7 care is a priority. If you have not gotten a formal diagnosis, get one with a Neurologist. Get to Medicaid and get that application started.
Where are your husband's siblings, might be time for them to step up.
Find a way to get out more yourself, and increase what he is responsible for. With a bit of luck it will increase his sympathy for you and decrease his patience for sitting this out indefinitely. That’s more productive than arguing, and better for the marriage. A part time job for you, so that you can afford more in-home care?
I agree with BarbBrookly to use her SS funds to pay for extra help, if this is at all possible. If your Mom has a medical issue that requires a trip to the ER, you can discuss the option of transitioning her into a facility directly from discharge. This may or may not be an option.
How does MIL's SS money get spent?
Can it be used to hire sitters to give you some time to get out?