How do we deal with declining health of live-in parent?

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My 81 year old mother-in-law resides with myself, my wife and our 3 young sons (ages 7 and 5 year old twins). She has a myriad of health concerns, primarily Parkinson's Disease. Over the past two years her health has declined. She is able to use a walker for limited mobility but can no longer shower herself, has incontinence issues, she can not prepare meals, she requires assistance to rise from any chair or bed. Her care is approaching 24 hours a day. She self-pays for a caregiver if we need to go out for any length of time but her resources are limited. This level of care is not what we signed on for when we moved her in with us 3 years ago. We are developing feelings of resentment and guilt because her presence and the care she demands are taking away from things we wish to do with our young family. We are beginning to feel trapped in our own home. She has stated emphatically that she will not allow us to place her in a personal care home or skilled nursing facility. In addition to my wife (her daughter) she has two sons who have basically told us that they do not want to be involved except for the occassional visit. Is anyone else in a similar situation and how do you cope? Can anyone offer any suggestions to help us through this?

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First, how kind of you to open your home to your MIL and to have provided help for her for three years. I'm sure that has contributed to her quality of life. I hope it has also provided some rewards for you and her grandchildren.

You are perfectly correct that "this level of care is not what we signed on for when we moved her in with us 3 years ago." Sharing a home is one thing. Caregiving for someone with mobility problems, incontinence, and need for 24/7 on-call help is something else altogether, and not what you signed up for.

Keep in mind that the house is yours. You and your wife have completed control over your own actions. You get to say who lives in your house. You get to say whether you change Depends and give showers. You get to determine what is a nurturing, safe, stimulating environment for your three sons. You are in charge. I'm belaboring the point because sometimes it seems to get lost in the discussions about caregiving.

Your MIL "will not allow us to place her in a personal care home or skilled nursing facility." Well, fine. As long as she does not (yet) have dementia and she is of sound mind, she can make decisions about her own living arrangements and care. She can say, "I am not going to go to a care center." But you and your wife can say, "You cannot stay here." Her right to make decisions for herself does not cancel your control over your house and your actions.

Money is always a factor in our decisions. You say MIL's resources are limited. I think the first step in planning ahead is to determine what MIL can afford. If she is not yet on Medicaid or any kind of elderly waiver program, look into that. If she has too many assets to qualify, it is time to consider using those assets for her care.

You say you are feeling trapped in your own home. Not good. What would it take for your to feel untrapped? For example, if someone else came in to regularly bathe MIL, and she had an aid with her for x hours a week, etc. would that make the situation acceptable to you? Or do you need her out of your house? I think that you and your wife need to be genuinely honest with each other as you discuss this. Maybe the only way you see it working for MIL to stay with you is to have 24 aids. If that is your decision and there is no way financially to make that happen, then you'll have to have an alternate plan.

Once you've made decisions about your actions and your house and you've determined what MIL can afford, then MIL can make her decisions. But her decision cannot be to stay in your house if that is not an option you are offering.

Explore what MIL is eligible for and what options are available, perhaps by contacting Social Services in your county and asking for a needs assessment.

Good luck!
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PS: Another thought, if your home is not big enough for a live-in caregiver and all the nursing/care-giving activities, may be everyone can pitch in to rent a 2 bedroom apartment close to you and have a live-in care giver stay with your mother-in-law, so everyone can visit and she can have her own space without being in a care facility if the private B&B style care homes are not an option.

Let us know how things go!
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Oops! Copy/pasted comment from other post you had...I see there are other siblings - if they do not want to be involved, then maybe they can pitch in on pay for the live-in caregiver, or to place her in a B&B Style Private Residential Care home. Send me a note for info on site to check to find these. Thanks!
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This is something we all go through. Are there any other siblings your wife has that she can stay with?

If not, I would recommend looking into Bed and Breakfast style private residential care homes, which are mostly ran by health care professionals - Nurses and Doctors - that offer a "Real Home" living care option for seniors without having to be in a commercial care facility. You can send me a message for websites you can search for local ones in your area you can tour. They usually offer shared rooms from $2000 a month and own rooms from $3000 a month depending on needs.

If Private Care homes not an option, you might look at a Live-in Caregiver barter option with some pay for 24/7 care. Depending on the area you live in and the standard pay for caregivers there, you may come up with a solution this way. You can post job listing on craigslist or care.com, and of-course be sure to check backgrounds, etc.

All the best!
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