Just need to share...


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?



Thank you for the update. I'm glad you found peace for the meantime.

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.

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.

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!

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.

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.

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.

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!

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))))

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.