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My boyfriend cares for his aging mother (84), who has dementia. He also has young adult daughters (college age) who spend some time at his home. His mom has lived with him for about 10 years, since the death of her husband. Her dementia was only diagnosed about 5-6 years ago and may still be in early stages. It’s hard to believe that what I am about to describe is still considered early stage, but from what I’ve read, it seems she is still early/possibly entering mid.
She can care for herself as far as bathing, etc. but relies on her son for taking care of nearly everything...bills, grocery shopping, driving, socialization, getting her meds out for her daily, taking care of the whole house, and often eating. Sometimes she eats, sometimes she forgets but chalks it up to not being hungry. Then she will eat with us as soon as we begin to have a meal. She does not like when he’s gone, wants to know where he’s going, who he is on the phone with, etc. When he is gone, she calls him often, simply to ask how to turn the tv on (the remotes can be confusing), or ask if the dogs have been fed (we have an automatic feeder). She will not look in the dish to see if the dogs have eaten before asking. She doesn’t check the calendar for reminders; she usually does not know what day it is, etc. She ruminates despite being on an anti anxiety med. She is also on meds to slow the progression of the disease.
She is in good physical health. She will garden, occasionally cook, and occasionally take a walk.
He and I have been dating for some time but I feel like we are in limbo. I do not want the relationship to end but feel like I have been dating him and his mom the whole time. He understands the need to get away, but rarely does so. He (and I) lose patience with her as she is very involved in almost all conversations including when we just want to sit alone and talk. She follows us around the house. Her short term memory is completely compromised, so she asks the same questions over and over again while we’re talking, even when the conversation doesn’t involve her.
We know there are day programs available but haven’t yet filled out the Medicaid application to access services. He is a very devoted son and may be in some denial as well. I understand (and he agrees) that he is slowly grieving. He is not one to seek support.
He struggles with boundaries as well...he deals with it all, includes her in most everything and becomes agitated with me when I try to suggest boundaries. He explodes when he can no longer take the repetition of the questions, her habits (rewashing clean laundry, putting away dirty dishes, etc.) but then feels guilty, etc. He has some, but not enough, family support. He cannot fathom moving her to a facility (which is probably too soon anyway) until she is completely unaware of her surroundings. She is a lovely woman, but has taken a toll on him and us. I feel guilty asking this, but how much longer can this go on at this stage?

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Thank you for the update. I'm glad you found peace for the meantime.
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Thanks for your response. It is a really difficult situation as you know. I would love to read more about, or hear from the partners of those who are caring for family members.
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This relationship will take a lot of work. A lot of give and take, compromises, understanding, revamping, etc. but, if you both are committed, you'll make it work.

At least he sees that he's stressed, that he can't do the job of taking care of his mother alone and that he needs to get part of his life back. It's also good that he understands your need for privacy.

Those who have posted are correct. It is impossible to give you an exact date or time for how long any stage of dementia will last. The medicine doesn't cure it and often doesn't slow it down either. (I didn't see any difference in the progression of the disease with my mother.) My mom has already outlived the doctor's prediction of when she'd pass on and he's a gerontologist.

I suggest you not move in with him until you both have a solid game plan in place.

He must start looking for a day care center for his mom and also a home care agency to allow him more free time (for work and you and friends).

I suggest you both do a lot of research on dementia-Alzheimer's, so you will be informed of what awaits you. You can find that info here or at Alz.org.

This is a tough situation and I hope it works for all of you.
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Quick update...BF had his mom stay at his sister’s home for 2 weeks! It was so peaceful knowing I wasn’t going to be pelted with questions throughout the day. We are working on meeting with someone who can help us move along in terms of a day treatment program. We also went to a support group together. At first he felt “dragged” there...by the end, he was announcing, “see you next week”. 😀
Despite the respite, he still goes through some moods. We are different in terms of how much socialization we need to feel energized. I need much more quiet than he does. But that’s my responsibility...to take care of me. He understands it and has recently said that he feels out of balance; needs more time with friends, etc. Wants to reconnect with his hobbies and friends that he engaged in before his mom declined and before we were dating. Some of his mood is related to needing his own space...away from mom, the relationship, the house, etc. Perfectly understandable as we spend a great deal of time together and it can feel stale because we have both sacrificed the lives we had before each other. One poster hit the nail on the head...I need to create boundaries for myself. I need to create a life for myself outside of the relationship as it has begun to define me. I used to be a whole person all on my own...🤔
I think we’ll be happier for it...we just talked about our goal of wanting to stay together for the long term. Need to find that just right balance.
Just wanted to give an update. Thanks for listening!
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Thanks for your thoughts. I hadn’t considered the resentment piece if I push too hard. It doesn’t usually get that far because he can be very defensive about it so the timing and approach of the conversation has to be right. However, I think he also feels in limbo.
That statistic is shocking to me. I honestly think he is open to having more support, but is not necessarily making the time to take care of getting things into place because it is painful and would mean that she is worsening. I get what you mean about the pressure of having scheduled fun, but also appreciate the idea of getting some things on the calendar that just belong to us. Some of this is denial, some is fear, some is grief, and some may even be my unrealistic expectations.
We both enjoy the dogs immensely, but since they are not allowed at my house (condo rules), we naturally spend more times at his. He is very sociable, and as much as his mom enjoys it, she also tires from it. I wonder if she would ever get to the point of suggesting something alternative. I doubt it, but she has also told him that she knows it’s hard for him to care for her and she regularly thanks him.
I have noticed that he has recently been making the effort to carve out more time with just me, and stated that he knows he needs to tell his mom that we need some space more often. It’s such a process...he believes in family first, the more the merrier, my home is open to you. Until I came along, there were no boundaries...now he is slowly making changes to put some in place. We’ve made progress, but have a long way to go.
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Coping, are you and BF aware that 40% of caregivers die before the person they are caregiving for? Even my self-involved husband was shocked when I told him that. Would his mom be opposed to a daycare/ senior center situation? It doesn’t sound like he is at all on board with finding a facility for her, or ever will be.

It’s difficult to schedule alone time with him, perhaps a few hours or so a week, and then think, “ok, we scheduled this, we need to have fun right now! If you’ve had a difficult day or he has or Mom has, that’s not going to work. Spontaneity works, hard and fast scheduling usually doesn’t.

BF has a lot on his plate right now. We had a poster here a few months ago (who has since disappeared) who was totally controlled by his mother after the death of his father. No matter what we told him about how unhealthy that was for him, it made little difference. Along the same lines, BF needs to make up his own mind about what he will do. You can chose to stick with him, even though he has offered for you to leave, and as others have said, this could go on for another 20 years. Enjoy your rescue furkids. Make the most out of what time you do have together. Don’t try to change things. Let him take the lead with that. If things don’t work out, Mom will blame you and so, eventually will he. You know yourself and your limits of tolerance better than we do. Good luck. Keep us updated.
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Thank you for all of the thoughts, resources, etc. I talked with him tonight about some of this. He is not at all opposed to getting some help in the house. He understands that this is a lot and that he is risking his own well-being/health by taking on so much. He simply made a commitment to care for her and he is honoring that. He was not in a LTR when her condition was diagnosed.
He also understands that I need to determine if this is worth it. He once told me that he would rather let me go and deal with being miserable than keep me in a situation that keeps me from having what I want. I don’t think in any way that he was using mom as an excuse; he simply understands that this prevents us from moving forward presently. I realize that I cannot move in while this is the situation; I need to be able to have my space.
Re: treatment...he is on an antidepressant/anxiety but recently lowered the dose because of insomnia side effects. I can see the (negative) difference with the lower dosage.
I told him about this website; he seemed somewhat interested in having online support vs. going to a group. And yes, some of it is head buried in sand...that speaks to the grief and not quite there acceptance.
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The average life expectancy from the beginning of ALZ is 3 to 20 years. Hmm. Not very helpful, is it? She is already passed the 3-year mark. Might she make it to 20? Who knows? How would you feel about being in this situation for another 16 years?

The average life span for the kind of dementia my husband had is 6 to 8 years. He lived 10 (in spite of several comorbidities). The loved one of another in my support group died in less than 2 years. Averages are interesting, but they mean nothing for a particular individual.

Here is a 3-minute video about what is happening in the brain as the stages progress. https://www.youtube.com/watch?v=Eq_Er-tqPsA It gives a very broad overview of the kinds of changes to expect, but not a guideline to how long each stage will last (because we have no way of knowing that).

Here is a description of what is considered mild, moderate, and severe ALZ https://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp#mild

The moderate stage is the one that lasts the longest, usually.

I understand it would help you a lot to be able to predict how long BF might continue being a caregiver. Sorry.

What is holding up the Medicaid application? Getting some in-home help and being eligible for day programs (and long-term-care if it becomes necessary down the road) would improve the situation a lot, I think. Why isn't this happening? Is this a head-in-the-sand problem?

You believe he is struggling with depression and anxiety. Is he getting treatment for this? I am really glad you have counseling support. He needs to take his brain health seriously, and get treatment if he isn't already. Get that head out of the sand, BF!
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Coping: Your man’s “situation” could last another 10 years.

I’m guessing that his age (right now) is 60-65?

Not trying to be morbid, but Mom might outlive him. Perverse. But it happens.

Sounds like he’s bound and determined to be hands-on until the absolute end.

In the meantime, the kids will fly the coop, get greedy, or both. And Mom will get worse worse worse.

Stay or go? I can’t tell you. If you stay, do not move in with him. Do. Not.

Boundaries! Self-preservation! We all crave companionship. Yet love does not conquer all.

You sound like an awesome, caring person. Tread carefully. ((((hugs))))
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Thanks for your response. My opinions about his mom are important to him, he just is not ready to think about a different living arrangement for her. He is not opposed to having help come to the home. He is finally asking his sister for more support. His mother’s care does not keep him from doing things socially. His intentions are good, but he gets so overwhelmed with everything in his life (he is also self employed), that things don’t get tended to as quickly as I’d like :) Again, some of this is due to being overwhelmed, some of it is most likely a slow process of grief and what he is able to accept as far as her illness. I believe he would be okay with me stepping in more as far as getting some care into place.
He just went through his own serious illness; he ended up hospitalized. I don’t believe he is fully recovered but is back to trying to do everything. The illness put him out for several weeks and put him back financially. I pointed out to him that if something else happens to him, then what?
I do not live with him. He would never expect me to care for his mom in that way. He doesn’t even want me to clean the bathrooms to help him out with the house. Doesn’t feel I should have to do that.
I will admit I have put family and friends on the back burner. Oh, I forgot to add...we adopted a rescue dog a month ago (and have had another rescue for about a year) so they keep us around the house more too. They provide companionship for his mom while he is working. His office is in his home, though, but she manages to mostly respect that boundary...
She also usually respects the boundary of his room being off limits as he has made this request many times...however, she will still make the bed and gather laundry...much to his dismay. I really think she is living in a time in her mind when he was a teenager and she is the caretaker.
I do have counseling support. I just wish I had more answers...what stage is this? How much longer can it last? I know there are really no answers and know that this will get significantly worse...but feel in limbo right now.
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Do you feel like you are sacrificing too much Coping1022?
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Dear Coping

You are in the same boat as your BF in more ways than one.

He needs to set boundaries with his mom. You need to set boundaries with him.

By default his mom’s needs come before everyone’s.

But you may have known all this before you started dating him.

Are you living with him? What happens when she needs help with personal hygiene? Are you up for that?

So are you supposed to help him with her but not have a say in any of the decisions about her care?

Seek therapy for yourself.

When you ask how long will this stage last, its difficult to say as patients progress at different rates.

Read the book “ Being Mortal, Medication and what matters in the end” by Atul Gawande.
Listen to Teepa Snow videos on YouTube.
Do a search on this site for “ shadowing”.
See if you can find a support group. Check the Alz website for meetings in your area.

Your BF will wear himself out if he doesn’t take breaks. They need to be scheduled as regularly as her doctor appointments. By that I mean, on his calendar with full intention of getting away.

What about your life? Do you have friends,  parents, siblings that you’ve put on the back burner? Maybe it’s time for you to take a break from BF mom and check in with your friends and family? 

A little time away may bring more clarity for both of you 
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I appreciate both of your responses. I have questioned whether this is what I want. It is a difficult thing for me to decide, as I know his situation will not last forever. I also feel I came upon this relationship (though I have known him for 30 years) during one of the worst times in his life. We have other differences as well, but I am not sure if they are insurmountable...as we are also similar in many ways. Sometimes it’s hard to know if I am sacrificing too much. To be fair, he has made changes for me as well.
I believe he is struggling with depression and anxiety (not surprisingly). However, I do not feel like a 5th wheel...we are a closely committed couple. I am highly involved in his children and extended family’s lives. I do not feel like an ultimatum is fair or warranted. If anything, this gives me insight as to how he will care for me as I age.
This is just not something one is ever prepared for when you think of getting older. I have not been married and am past the point of having children, so that is not an issue. If anything though, it makes me realize that we are different in this way...I feel boundaries are essential while he is always available to everyone. I need quite alone time to recharge, he prefers the activity of family. He is very social, as is his whole family, and he sometimes cannot grasp my need to be alone with him. He mistakes it for me having negative feelings about his family. Other times, he is anxious to just unwind with me when the day is over.
I just wonder if there is any way to gently push him towards more self care as I see the suffering; quite honestly the aging...in him over the last couple of years. He is the type to think, ‘if I ignore it, it doesn’t exist.’ Classic denial. Also, does this sound like early stage dementia still?
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I don't know what stage she is in, but when we say dementia progresses we mean it gets worse!

His devotion to family is a credit to him, and may make him a wonderful mate. On the other hand, if he is not willing to take some uncomfortable actions for the sake of your relationship, give that some serious consideration before making a permanent commitment.

There is no doubt that his mother has dementia! She can't live alone. But that doesn't mean she can't be alone in her room or some other room while you are home. You need to have some couple time each day. For an hour in the afternoon (after work? does one of you work outside the house? does she nap during the day?) you are relaxing in your bedroom or the den etc., perhaps having a beer or wine and a conversation, and she is not to disturb you. Don't expect her to remember this. Put a stop sign on the door with a "Couple's Hour" note on it, and be sure to take it down promptly.

You absolutely need time off together. You both deserve date nights. If he is too devoted to Mom to make these arrangements (or allow you to make them) I'd worry about his devotion to you.

Exploding is very poor coping. Sounds like he could use some help understanding how to better deal with someone who has dementia. A local support group would be very helpful! Or ask him to join us here.

He needs to better manage his interactions with his mom and his relationship with you. There is no shame in being in this spot. Loving someone with dementia doesn't come with a handbook. Getting some help is perfectly acceptable.

And he probably is grieving. His daughters probably are too. And that deserves respect and compassion. Having you there should be a comfort to him. But that doesn't excuse him from recognizing and attending to his relationship to you.

BTW, just for your information there are NO drugs that slow the progress down, in spite of the original hopes for them. Some do improve some symptoms for some people, but the defects in the brain continue on undeterred.
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I understand that you don’t want to give your bf an ultimatum, but is this really what you want from a relationship? He is basically married to his mother, and you seem to be a fifth wheel. He’s losing patience with her and then with you when you suggest boundaries. People don’t need to be in a catatonic state before they are moved to a facility. She could go to Assisted Living. If that’s not financially possible, there are some wonderful nursing homes that will allow her to garden, cook, etc.

But, if your boyfriend doesn’t realize that a successful romantic relationship requires both parties to be present and accounted for, and that he needs to accept that his mother is a roadblock to this relationship, you may have some difficult decisions to make.
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Dear Coping1022,

Please don't feel guilty. It feels like you have tried so hard to be supportive of your boyfriend and his mother. It is a lot to see a loved one take on. He sounds like an extraordinary patient and loving son.

I can relate because that's what I tried to do for my dad as well. The sad truth is that this will go on till your boyfriend feels burned out or his mom ends up in the hospital for some reason.

I really struggled with boundaries too. I would suggest he come to this website and read the stories of other caregivers. This might help. For myself looking back, I realized what a mistake I made trying to be everything. I would also recommend this article called "Rescuing, Resentment and Regret." When he is ready maybe talk to the family doctor, social worker or the Aging Care office about resources in the community or through church.

We all love our parents but I feel from what you are saying it is taking a toll on him.
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