Reader Question: If My Mom has Alzheimer’s, Do I Have to Give Up My Life?

Reader Question of the Week
Here’s the situation: you have young kids. You’re really busy. And now your mom has Alzheimer’s (or someone else in your extended family does), and people need you to drop everything and run. Do you do it? And what if the situation persists–so that you have to give up your life? What do you do?

Every Monday I post a Reader Question and try to take a stab at answering it. Last week I linked to an older post about setting boundaries with parents, and a reader wrote in with this really tricky problem:

My mother-in-law has Alzheimer’s. My husband is one of 3 kids, and one of his siblings moved the mom in to his house. But they said that they’d look after her during the week, but on the weekends they want a break, so the other siblings have to care for her 24 hours every other weekend. I’m a stay at home mom; I could look after her during the week easier, but if I give up every other weekend, my family will hardly ever have any time together. We’ll only go to church together every other week, and the kids are really involved in church. We already have very little time. My husband thinks we should just do it, but I’m so afraid of losing my family. What do I do?

That’s a really tough situation, and there’s so much guilt involved. I’ve had other readers write in with similar problems. One reader had a sister-in-law with schizophrenia who lived in another city. She refused to sign any authorizations for the physicians to talk to her family about her condition or to have power of attorney. Yet every time she got into trouble and ended up in the hospital, my friend would have to drop everything and go to the rescue.

Here are just some general principles that I think need to guide us when we’re trying to decide thorny issues like these:

When your mom (or another relative) has Alzheimer's: Sorting our your responsibility to older relatives who need you.

1. Clarify: What Are Your Main Responsibilities?

Just because someone needs you does not mean that you have to meet that need. Lots of people have needs; the real question is:

What needs has God specifically assigned to you?

In most cases, those would include your children’s and your husband’s emotional, spiritual, and physical well-being. We also must honour and care for older parents. Any community that we are a part of, though, also does have the right to expect certain things that come from being part of a community. When friends, extended family, or our church family has a legitimate need, then we are to step in. As it says in Galatians 6:2,

Bear one another’s burdens and so fulfill the law of Christ.

So likely you have a hierarchy of those whose needs you are wholly or partly responsible for: your immediate family; your extended family; your friends; your church community. As the circle gets wider, then those responsibilities should be shared with more people. So while your own children have a high demand on you, and your parents have a demand on you, someone at church would be the responsibility of a wider number of people.

2. Clarify: Is this a Temporary Blip, or a Permanent Thing?

I once received a phone call from a panicked mom from my church. She had taken her child in to the doctor’s office that morning because he just didn’t seem “right”. The doctor sent the child for tests and within a few hours that little boy was admitted to the ICU with problems stemming from diabetes, which had not been diagnosed. She had to stay at the hospital with him.

But she also had kids arriving home from school, and she had no clothes for tomorrow, and her husband wouldn’t be home for a few hours.

I dropped everything, put some of the dinner I was making in a Tupperware container for the mom, headed over and picked up the kids from school, got them some pizza, left them with a friend, collected some clothes for the mom and the boy, and went to the hospital and delivered dinner and clothes–and a novel and a crossword puzzle book. I spent some time sitting with her and talking with her before coming home.

That was a temporary emergency, and I would hope that most of us would drop everything and run for that. But what my two readers are describing isn’t temporary; it’s something which will be a long-term responsibility. And that requires a different response.

3. Ask Yourself: What Am I Capable and Willing to Do While Still Fulfilling My Main Responsibilities?

The problem with decisions like this is that we have the wrong starting point.

We begin with: “My mother-in-law needs someone to care for her full-time, and there is no one else, so I’ll have to do it.” Or we say, “My sister needs someone to rescue her, and she has no friends or relatives except for me, so I’ll have to do it.”

We’re starting with the need.

If you do that, the need will suck you dry. And I do not believe that God wants you exhausted, and unable to tend to your main responsibilities (your kids). You can only do so much. He only gave you so much time, so much energy, and so much money. You need to be a wise steward of those things.

So instead, ask yourself: what am I capable, willing, and called to do?

BoundariesI believe that there are times where we are definitely called to sacrifice–especially for our parents. However, even this does have its limits. There are times when you just can’t do it all.

The woman with the mother-in-law with Alzheimer’s, for instance, is willing to do some work on the weekdays. She’s willing to give some weekends–just not every other weekend. And it’s okay to take a look at your life and say, “I’m able to do this much, but no more.” It’s called setting a boundary, or setting a limit, and the book Boundaries by Henry Cloud and John Townsend is excellent at explaining how to do this and showing how healthy boundaries are actually part of a healthy Christian life.

Sit down with your husband and say, “this is what I can do. I can give one day a week during the week, or one weekend a month. But that is all, because I think any more than that will exhaust me and harm our own family.”

He can choose to spend more of his time; that is his choice. But you are being clear about what you can do and still be emotionally healthy and able to raise your children well.

Here’s why it’s important to do this: Often until we say, “I cannot meet all of these needs,” we don’t find the solution that God actually wants for us. We throw ourselves totally into it and we make ourselves exhausted, but perhaps God had another option. Maybe you could pool your money and pay for a week of relief in a home every month. Maybe you could see if there’s a volunteer agency that could send him help once a week. Maybe there’s a government program she could qualify for. Maybe there are other friends who might be willing to help on a rotating basis if it was manageable, like once every two months. But you don’t start exploring these options until you say, “I can’t do this.”

4. Accept that Others May Not Be Happy

It’s messy to say no. Other family members get mad. Sometimes our spouse gets mad.

In this case, one family member has taken on a HUGE responsibility by having her live there, and it’s easy for that family member to turn around and say, “I’m doing all this, the least you can do is every other weekend.” Put like that, it does seem selfish to refuse.

But here’s the thing:

You never asked her to take the mom in to live full-time.

Part of having boundaries  is also letting other people have their own boundaries. This other family member needs to be told, “What you’re doing is wonderful, and we thank you for it. But we can only help this much. If that just isn’t enough, we would be happy to sit down with you and try to figure out a better solution, since it doesn’t seem as if we can do this.” Just because someone else has decided to give X amount does not mean that you are likewise required to give X amount. We are each solely responsible for our own choices.

Just because someone has a need does not mean you need to be the one to meet it. It means you need to run to God and pray and listen and wrestle and seek His calling for your life. It will be uncomfortable. And sometimes we are asked to sacrifice so that we can care for a relative. But the answer isn’t the same for each family, because each family has different schedules and different demands. So pray about it, and then draw a boundary. Say, “This is what I’m able to do. If that isn’t enough, I’m happy to throw my energy into finding another solution.”

There always is a solution that will not require you to burn yourself totally out, because I don’t think that’s God’s will for you. So seek it. Run after Him. And ask Him to show you and give you wisdom. Don’t let guilt make you do things that aren’t yours to do.

Comments

  1. Meredith says:

    Timely letter for my family! I have lived this situation several times and am looking at doing it again very soon. There are lots of options–taking turns on the Sunday mornings so that most of the family still goes to church together, hiring adult daycare for church time, offering to assist during the week. It is hard when one person takes on a lot of the burden, unasked, and then demands that you do specific things because the are already doing so much.

    Boundaries are hard to se. The hardest for me was an elderly relative who had cancer. She had no children, but we were very close to her. We dropped everything for chemo and surgeries and she went into remission. When she relapsed, we jumped back in, dealing with emergency room visits, staying the night with her (along with several other relatives and friends). When she stabilized again, my husband and I told her, “we cannot keep staying the night (he stayed one night a week, I stayed two), since we have kids at home that need us.” She wanted the company but didn’t actually need assistance at that time. We told her, “If and when you need our help again, we will be there for you.”

    Well, things got nasty very fast. She said (I kid you not), “I am going to cut you out of my will!” and we reminded her that it was her money and she could give it to her church or the missionaries or spend it all, because we did not think she owed anything to us (that sounds snarky but we really did say it nicely, as in, do what gives you pleasure, because it’s yours). Things were bad between us almost until the end, and a less altruistic person “helped” her in exchange for cash handouts, access to her credit cards and the promise of an inheritance. This same helper criticized me for not taking care of the relative, or letting my pre-teen children spend the night with her, but her daughter could not because, “she had kids to care for”, spread lies throughout the extended family and didn’t tell us that her doctor had said that it was time for hospice. Fortunately, we were able to be there for her at the end, arranging hospice care in her home and spending time with her.

    So be prepared! Fortunately for us, the horrible person’s son apologized several years later for telling us off, based on his mother’s stories. He realized later that she was not telling the whole story. As far as the will went, she really did rewrite it to give us a bit of money, when we would have originally inherited probably $300,000-$400,000 in property and other stuff. It never was ours and we never counted on it, so life goes on.

  2. Then he said to them all: If anyone would come after me, he must deny himself and take up his cross daily and follow me. For whoever wants to save his life will lose it, but whoever loses his life for me will save it. What good is it for a man to gain the whole world, and yet lose or forfeit his very self? Luke 9:23-25

    Honor your father and your mother, as the Lord your God has commanded you, so that you may live long that it may go well with you in the land the Lord your God is giving you. Dueteronomy 5:16

    Wives, submit to your husbands as to the Lord. For the husband is the head of the wife as Christ is the head of the church, his body, of which he is the Savior. Now as the church submits to Christ, so also wives should submit to their husbands in everything. Ephesians 5:22-24

    Give proper recognition to those widows who are really in need. But if a widow has children or grandchildren, these should learn first of all to put their religion into practice by caring for their own family and so repaying their parents and grandparents, for this is pleasing to God. 1 Timothy 5:3-4
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  3. Melanie E. says:

    I guess I’m confused about why it sounds like the whole family needs to be involved with the every-other-weekend care. If it were us, we’d swap out the adult staying with the parent each time, and the remaining parent would make sure the kids get to church and the things they’re involved with there. Yes, it means that every other weekend one parent or the other is gone, but you’d still have the weekends in between. Plus, it could be good bonding time between the “single” parent and the kids. (Even with mom, the family dynamic is different if you’re alone vs. having Dad with you.)

  4. Wow this is really a tricky question. I have been asking myself this many times. I don’t want to sound selfish but I would not want to burden anyone if it was me.

    I think as a married couple your first responsibility is to God then to your each other and your children. Anything else comes forth. I think you first of all have to pray long and hard about it and really have a discussion with your spouse before taking another person into the house that you have to care for and not push your will on the other person.

    • Anonymous says:

      I agree, Matt. I wouldn’t want to burden anyone either. When people refuse to be in a professional care facility, do they really understand what they are asking of their family?

      • It may not be a refusal to go to a facility but either not affordable or the children decided they didn’t want her in one… Just a thought :)

      • Melanie E. says:

        With Alzheimer’s, she doesn’t have the capacity to make a choice. She is not intentionally burdening her family with her care.

        Also, it’s been shown that people with assorted dementias do much, much better if they can stay either in familiar surroundings or with familiar people for as long as possible. When they have to be admitted to a care facility, they go downhill much faster.

  5. Mrs. Mac says:

    I wanted to offer you encouragement as you make this decision. The Bible says our FIRST obligation is to our family by caring for our parents and grandparents – to repay them! This is how we put our faith into practice. You may read1Timothy 5: 3,4,8 for clarity and the whole section for context. The Bible actually has quite a bit to say about caring for the elderly, young, needy, etc.
    “Boundaries” is not the Bible. Having healthy boundaries in relationships is fine, but God calls us to fulfil our covenants, to sacrifice, to obey, to pursue godliness. Do you think God will forget to honour your obedience to His commands? You can be an example of compassion, sacrifice, love, and honour to your children! They will learn empathy, consideration, generosity, and patience. These are qualities you may benefit from as you and your husband age – dementia has a genetic thread (just sayin’).
    Don’t be fooled by thinking this is a “choice” with little consequence – shall I have eggs or cereal for breakfast? – this is a decision that will affect the trajectory of your relationships with in-laws, your husband, your children, and your future grandchildren. It’s a big deal!
    The biblical book of Ruth tells the story of the blessing that God gave Ruth when she decided to go beyond her family obligation and instead, covenant care to her mother-in-law for the rest of her life. God honours Ruth with a place in history because of her sacrifice!
    God bless you as you seek to be obedient to His calling, train your children in honouring their elders, and support your in-laws. You will decide how that is best done within your family, but the commitment will give you more family time, not less.

  6. Anonymous says:

    This is a tough one! I agree with what you have said, but I also find it hard to reconcile with the command to honour our parents. When my father had cancer, I took a leave from my job, and stayed with him for several months until he died. I was newly married, but we didn’t have any children. My husband drove the 5 hours and came to stay there on the weekends. My sister who lived about 1/2 an hour away didn’t really help because she “didn’t have time.” She didn’t feel that she should have to give up her life because our dad was sick. She was right, but I also think that me going there was the right thing to do.

    Now my mother is deteriorating (but she doesn’t have a terminal illness.) She lives hours away from all of her kids and refuses to move. She had surgery and never told anyone until she was discharged and at home recovering. If she’d given me some notice, I would have made arrangements to stay with her for a few days. I struggle with how to honour her without losing my sanity.

  7. Very good points, Sheila. My mother died of dementia in 2008. Honoring your parents is not at the detriment of your husband or children. Spouse and kids are the first priority. These boundaries are tough to put into place when you are dealing with someone who isn’t healthy. I looked back to my parents youth, when I remembered them saying they would never want to be a burden. That’s what my sibs and I based our decisions upon. Aging parents’ minds aren’t always working logically.

    I think in any situation where a parent is moved into one siblings home, a meeting needs to be held beforehand, not after the fact, to hash out these kinds of details. The main caregivers cannot be demanding, because it is their choice to be the main caregivers. Sibs need to work as a team. As sibs you also need to be looking out for the best interest of each other, not just the parent. The best interest is to realize you all are in different places in your lives and abilities and boundaries. If a cohesive plan cannot be put into place, a care facility keeps the peace and still honors the parents. Good care facilities are out there even though they get a lot of bad press. We found one.
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  8. Just a few thoughts…
    – people, regardless of physical or mental abilities or disabilities, are to be treated with respect because they are made in the image of God. Therefore, whatever decision is made, (care facility, nursing staff, hospice, care in your home, etc) it should all be done with the intent of honoring and respecting that person. There are times and situations that call for facilities, and there are situations that call for being in a family members’ home. There is not one solution that fits every single situation other than the outlook of respect and honor. Love wants what is best for that person – and what is best is not always what is easiest in the moment (for either party).
    – it is often easier, like Sheila said, to say/offer what you CAN do, instead of what you can’t. In the reader’s question, she states that she could do things during the week, but the weekends would be difficult. Perhaps she could be a support during the week more on an ongoing basis? Take mil every Monday/Tuesday… provide dinner every Tuesday and Thursday… provide childcare for nieces/nephews during the week… volunteer to transport for any dr appts… the options are wide open!!
    – as someone who has personally cared for a relative with Alzheimers, I will tell you that it is unbelievably hard, but it is also so very rewarding and will truly teach you about what is important in life. Do it. You won’t regret it. Everything worth doing is hard.
    – as someone who has been cared FOR, please know that the last thing we want to be is a burden and that we can sense it even when we can’t vocalize it. To feel like a burden to our loved ones is crushing on top of a wounded spirit that is already battling with physical and mental changes out of our control. Please, please – go back and read my first point. :) We are made in God’s image, no matter our current state. Treat us with honor and dignity and respect. And if you need to have us taken care of in a facility somewhere, please make sure that THEY will treat us with honor and dignity and respect. (I suffered a Traumatic Brain Injury, and am obviously doing quite well now! It did give me the ‘advantage’ of seeing the other side of the coin when it comes to care giving and rehabilitation and cognitive issues.) :)

  9. For us, the set of parents who could use our practical help are also the ones in a different country.
    How to honour them, support them where possible (phone calls, mostly, since air fares are expensive and vacation time is limited), and not feel guilty about a choice made many years ago to live where we do – it’s an ongoing challenge!

  10. Mrs Becky says:

    This may have been suggested… Have you asked to give them a few days off during the week in exchange for a weekend. And still do one weekend a month. That way the one holding primary responsibility can go to a doctors apt, get groceries, or just have a break for a day or two a month in exchange for your weekend. It is putting up the all important boundaries but also allowing them to have a carved out time for their family also wittout you giving up your church responsibility and involvement.

  11. The bigger issue – as Sheila already said – is not letting the other family dictate what your contribution will be. Even though they’re being very generous – taking care of her all week – that shouldn’t force anyone else’s hand. Husband and wife need to get on the same page there, before talking with the family that took in Mom.

    However, maybe I’m reading too literally, but the letter says “take care of her for 24 hours every other weekend”. In which case, have Mom over Friday night to Saturday night, and you can still all go to church on Sunday. You basically give up two days a month. That sounds more doable. Now, maybe the writer really meant 24 hours a day for the whole weekend… again, maybe I’m too literal.
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  12. I think this is truly a tough spot.You could either overload yourself or can look selfish.I think the answer lies in prayer and ask god to help you sort this.I hope everything works out well for you my friend and I pray that your heart and family be protected.

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  13. kellyk(@RNCCRN9706) says:

    I LIVE this situation EVERY DAY! My 91 yr old Mother in law(MIL) lives with us and has Alzheimers. She and I DO NOT get along at all…never really did to be honest. It’s like she resented me for taking her ‘baby boy’ (he was 34 when we met and got married 15 years ago) away from her. I also believe that she has some undiagnosed and untreated psychiatric illness based on what I’ve witnessed and conversations with my sister-in-law and other family members. That on top of the Alzheimers is NOT a good combination.
    Let me just say that caring for someone with Alzheimers is not easy. They are forgetful and ask the same questions over and over again. With my MIL, it’s about our dog. Did the dog get fed? Where’s the dog? She’s constantly asking the dog if he has to go ‘pee pee potty’. We tell her at least a 100 times a day that the dog has been taken care of. And the next day it’s the same thing. She can’t be left alone for long periods of time because we’re afraid she might try to make herself a cup of coffee and accidentally leave the gas stove on and fill our house up with gas fumes. Or leave the water running in the sink. Just recently, we left the house for an hour and we told her not to leave a certain door open and sure enough, when we returned, that door was open and we have the air conditioning running but ours is an older home and there’s no ac vent in that particular room so it was letting heat in the house.
    My husband saw how bad his mother truly was when he was laid off from work from December thru May this past year. She can’t cook or clean for herself anymore either. We do all that for her. She has to be reminded to eat. Otherwise she probably wouldn’t remember….yet she is constantly asking about the dog. We have a person come over once a week for a few hours to stay with her while we go out for dinner or something. My brother-in-law lives a block away. He takes care of breakfast and lunch as hubby and I both work 3rd shift. Brother in Law also stays at our house during the week so MIL isn’t alone at night. Sister-in-law does little to nothing to help out with her mother. We have to BEG her to take her mother to the hair dresser once a month.

    Being asked the same questions over and over and over again in a 2 minute time span is very frustrating. I can’t get away from it because she LIVES here….her sons REFUSE to put her in a nursing home. She is able to move freely and can dress and bathe herself but if that ever changes, they will have no choice. I didn’t ask to live in this situation and if I KNEW this was how it was going to be…well…let’s just say that his mother has put MAJOR STRESS into our marriage!!! It stresses him out too. BIG time and that’s not good.

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