Life after stroke

[Anonymous]

MIL had a major stroke seven weeks ago. She’s lost most of her language and is currently struggling with apraxia, aphasia, and right side inattention. She’s home now with in-house therapy 3x/week. Her adult son lives with her but is not attentive to her needs and works long hours. DH and his sister are trying to spend several hours a day with her but it’s been hard with jobs, kids, etc. We had an aide coming eight hours a day but MIL was adamant she didn’t want outside help. She refuses to be anywhere but her home. She is understandably frustrated and depressed at all she’s lost, particularly her independence. But she’s also significantly impaired in ways we’re only starting to realize. She’s very willful and insistent about reengaging in behaviors that are very dangerous for her right now - drinking, smoking, and driving - and that creates enormous tension between her and her adult kids trying to keep her and others safe. Any advice or encouragement? Will this get better? Can stroke survivors regain independence? Are there laws that prevent her from driving? We can hide the keys for now.

[Anonymous]

I'm sorry that your family is going through this. I would suggest a few things.

1) Depression is a stroke side effect resulting from brain injury. As well as she's coping with loss of ability and independence. It's to be expected. See if the doctor can add an antidepressant and you can tell her "it's for brain injury" or something.

2) She may be having alcohol withdrawal. It's possible she was drinking more than you know. Is she also off her usual caffeine intake? That can make people real crabby. If you think alcohol withdrawal is possible, seek some professional advice to help her through it.

3) See if you can find an aide who will pass as a "cleaning lady". Then at least she'll have a clean house. If you can get someone 4 hours a day 2 days a week (the days the therapist isn't there, ideally), that person can clean, do laundry, change sheets, take out trash, and generally lighten the caregiving load for the rest of you. Tell her "Mom, this is what we need to free up time so that we can focus on you, not on chores."

4) You can't expect someone to cope well with a life-altering brain injury. You don't have to solve all the problems right now-- hiding the car keys is enough for the present. She may improve a bit with time and conscientious rehab, so maybe postpone decision-making for a little while.

[Anonymous]

OP here, thanks. Yes it’s hard to know how much of this is injury, addiction withdrawal, depression. She started a new antidepressant two weeks ago so hopefully that will kick in soon. Her docs are not suspecting chemical alcohol or nicotine withdrawal any more (they treated her in rehab). But she is still emotionally addicted to drinking and smoking and has never accepted that. She’s not going to start now. We were hoping that this imposed break from substance abuse would break the cycle but she’s determined to get back to her old life. Even though her doctors have told her that chain smoking most likely caused her stroke and puts her at great risk for another.

[Anonymous]

I hope her doctor is notifying the motor vehicle administration. Having a stroke is one of the conditions where medical professionals are supposed to notify the MVA. Here is the info for Maryland:

Referrals from professionals – particularly law enforcement officials and health care providers – should be reported directly to MVA if there are concerns about medical fitness to drive. Health care professionals may report to MVA by simply providing a statement on their letterhead identifying concerns with their patient’s ability to drive safely. Healthcare providers may also report with an easy-to-use form for Referral to the Maryland MVA. Either the letter or form should be sent to the MVA at contact information.

In addition, the MVA accepts referrals from concerned private citizens – neighbors, friends, and family - of drivers with potential problems regarding their ability to drive. A letter of concern should be mailed to the MVA contact information. The letter of concern should include as much of the basic information as possible. If the concerned citizen wishes to remain anonymous, they should indicate that wish in their communication to the MVA.

Letters of concern are first investigated for authentication of information. If the concern is validated, the referred driver is requested to submit a medical report and health questionnaire for further review.
If you have specific concerns about a loved one, it is recommended that you discuss this with their physician or treatment provider. The physician can then contact the MVA directly with the necessary information. This will expedite the review process.

[Anonymous]

The driving is scary because she could kill someone.

If she doesn’t care about that, she could lose her house and a lot of her money if she is sued for killing someone.

A family member should disable the car by removing a part.

[Anonymous]

Longer term concern ~ what's her financial situation? I hope someone knows all the details. If she has any event that lands her in the hospital, you may need to consider insisting that she can not be released back home. That there is no support for her needs at home. The hospital then will work with you to find a place for her, suitable to her needs. But you've got to know how much money she has to you know how long the money is going to last. Or if you will need to look for a place that, eventually, will accept Medicaid as payment.

Shorter term concern ~ For now, she is not of reasonable mind to get to decide this. "We had an aide coming eight hours a day but MIL was adamant she didn’t want outside help". If family is not going to be able to nurse her for 2-3 years, she needs help. Have someone take her to the doctor, explain the situation, and seek drs. orders for what is needed and a social worker to visit.

[Anonymous]

My dad was very resistant to having an aide. We tried hard to find a compatible personality, and had the aide check his pulse with a stopwatch daily so it would seem more "medically needed" in my dad's view. Eventually he just got used to it.

[Anonymous]

Op here. When she was released from rehab, the family agreed to do most of the home-based care, hoping that she'd become more independent and need less over time. The plan was to reevaluate at 3 months and again at 6 months. She's made progress and her doctors are optimistic she'll get back some of what she lost. No one knows how much or how long it will take.

She can walk, bathe and toilet, feed herself, do laundry, and clean the kitchen. She can't yet cook or operate simple technology (elevator buttons, remote control). She can understand simple directions and conversation but can't speak more than a few words. Yesterday she managed to call my husband back after he called her cell phone. That was a significant milestone.

Her finances are okay. DH is her POA so he knows her situation. She's only 78 and had enough to live modestly before this happened. Now I'm not so sure.

[Anonymous]

Take a part out of the car so it can’t start.

Turn off the gas to the stove so she doesn’t burn down the house.

Set up cameras if you think it’s necessary to monitor things when you’re not there with her.

[Anonymous]

Keep up with the PT and OT at home. More movement is key to stroke recovery to keep rerouting those severed neural pathways.
With her right hand have her pick up easy items then work up to small items:e.g
buttons. This will help her regain some of the right hand/arm fine motor skills.
Praying for her!

[Anonymous]

Deactivate the car--take the battery out of the car.

[Anonymous]

If she was chain smoking and drinking up until age 78 it is unlikely she will stop.

[Anonymous]

Would it help to say the doctor is ordering things (like home help)?

My older mom was big on following what the doctor said to do.

[Anonymous]

Absolutely. Lie if you have to. Honestly, you are the competent adult in the room. You keep them safe (do what any other reasonable person would do) even if you can't keep them happy.

[Anonymous]

Eventually he just got used to it

Every safeguard we put in place, they got use to it. Eventually. In some cases, they later thought it had been their idea. This included moving them to assistant living/dementia care. They forgot all their objections and what they had put us. Big picture: you have got to be willing to have your parents mad at you. For awhile. Having siblings and all being, relatively, on the same page is the greatest of blessings. Btw, if you still have the need to feel adored, need your parents to play the role of providing emotional support, parenting you -- this has to end. The tables have turned.