Sort of a caregiver - feeling lost

Not quite caregiver

Hi everyone, and thank you for providing a space for support and commiseration.

My situation is that my Mother in Law was diagnosed with AD several years ago, and managed to live independently with weekly visits from my husband until this year. Our plan had been to place her in AL, but now there are concerns about funding that, so she is living with us. 

My issue is that I am not sure what my role is in her caregiving. My husband seems inclined to let her be as much as possible, and he doesn't seem to be inclined to be any more informed about things than he is. I realize that much of living with someone with dementia is crafting your own life around them, but I often find myself wandering where to step and where to step aside. There are issues that I feel like need attention, but she's not MY mom, yk? And really, I never have had a significant relationship with her, she wasn't really a part of our lives until she came to live with us. 

I'm trying to help with daily caregiving, but she doesn't trust me (because she doesn't know me, I understand that). 

Sometimes I think that maybe my job should just be to run everything else in the house so that my husband can take care of her, but then that puts an unfair burden on him (and also, he's not a caregiver by nature, sorry to say). 

Bottom line is that in a lot of cases, I think I know what I would do if she were my mom, but she's not, and I don't know what my role is. 

Lindsay22

Hi! It seems like you and your husband need to get clear on your communication.  Would he consider some sessions with a counselor? I think it could be very helpful for you both perhaps framed as a strategy and planning session if there is resistance to therapy.  I know as the daughter of the person with dementia I feel very overwhelmed by the responsibility and even when my spouse offers to help I feel it is my duty to handle it.  But the bottom line is that I need my spouse to help me, both with mom and with the rest of our daily life responsibilities that get neglected when I need to care for mom.  Your husband may be feeling overwhelmed and it's clear that you want to help but don't know how.  I think a third party counselor could be super helpful to work on a plan with you both.

Rescue mom

I’m wondering about a couple things that might help others provide better advice…are you both at home with her all day? Or is it just one of you? A lot of what’s done, IME, depends greatly on who is there, and who’s able, to do or handle it.

And what does she need to be done for her? Some “needs” are more urgent or time-sensitive. Or are you thinking about socializing/social activities? Hobbies? Food? Or more “personal” things like bathing and using the toilet correctly?

Your DH is probably at least as “lost” as you are. No matter what, her presence is going to put huge, enormous demands on you both. Have you asked him how he’d like to handle (whatever the issue is)? Maybe a serious conversation, where you ask him “what should WE do when she….” would help. 

You absolutely will not be able to do it all yourself, without help and cooperation, and him doing a lot. You will likely need even more help. (Your own ages and health—what if you get hurt, or sick? It happens a lot—are part of that). He must get involved.

Keep in mind that she will need more and more done for her, will have more demands and require more help, as time passes. This disease only goes one way.

M1

Welcome to the forum.  Like Rescue Mom, I was wondering if you can give some more specific examples?  Hard to give feedback in a general sense.

[Deleted User]

The user and all related content has been deleted.

Not quite caregiver

Thanks so much for your responses! I'll try to address each question, but if I miss anything, just let me know. 

Lindsay22 (my sister's name is Lindsay!) - without meaning to disparage my DH in any way, I'm just going to say that counseling isn't an option and that yes, communication is an issue. That isn't going to change, so I'm going to work with things as best I can. 

Rescue Mom - Currently DH is home with her all day and I'm away at work. He already worked from home, so that hasn't changed things, yet. His schedule is pretty flexible, and thus far, she seems okay with waiting for things when he is in meetings. She can still handle bathroom visits and such independently, so he doesn't have to worry about that. Her daily shower is actually one of the things I question though. DH thinks that she's still managing that okay, but she's often in the bathroom for 2 or 3 hours, with the water cutting on and off repeatedly. He seems content to let her be as long as she isn't hurting herself, I'm not so sure. 

We provide her with all of her meals, she does get snacks and drinks herself. 

She does no socializing or hobbies. She watches TV all day. Literally, that's all she does. I suggested senior center activities or possibly a day care situation, but DH said that she is happy watching TV and doesn't want to do anything. 

So...right now, if I had to guess, I'd say she was in the middle stages of dementia. She certainly is not capable of living by herself, but she can mostly follow short conversations, she is mobile, and mostly able to maintain her own hygiene. 

Where my DH and I differ in opinion are things like the following:

-I think she needs more interaction. He says that she is fine. 

-I think she needs to see a Dr. - he says that there's nothing they can do, so why bother. (To clarify, he would absolutely take her to a Dr. for a physical medical issue, but sees no need for anything AD related. She was diagnosed, end of story. I don't know, maybe he's right about that one?

-I think we need to pre-emptively put some safety measures in place (alarms on the doors in case she wanders, for example) - he says we shouldn't worry about things that aren't problems yet. 

-And finally, everything I've read says that it is better to move them into a MC or AL facility while they still have to capacity to comprehend it somewhat if you can - he thinks that we should wait until we can't take of care of her anymore. 

And for the really selfish bit from me - we are only now starting to come out of the pandemic. Out of an abundance of caution for her safety as much as anything else, we isolated ourselves nearly completely, including our 16 yo son, for more than a year. Now that we are all vaccinated, I want to do things, especially with our son. Except we can't - our lives are still on hold because we are now her sole FT caregivers. And I'll admit that I'm angry about that. I'm trying not to be, it isn't her fault, but it is what it is. 

M1

Thanks not quite, that gives a lot more information.

I suspect your husband is right about her not necessarily needing more interaction. While you and I would be bored stiff in front of the tv all day, most PWD are not. Apathy and loss of executive function are part of the disease, so you're probably projecting here, more interaction is what you would want.

On the other hand, I suspect you are correct that she may need more bathroom/bathing help. I would be surprised if your husband were comfortable trying to find this out. Could you put a camera in there unobtrusively? Or maybe this is clearly one where you all need to talk about who does what.

Sounds like at the very least, maybe you all need to agree on some preset criteria for when placement will be necessary. If bathing assistance is one of those criteria, it may come sooner than you think. I don't know that you should volunteer for that job just because you're female.

I also agree with you that your son should be your top priority. He's only got a couple more years at home, and you don't want to lose them to dementia.

Good luck, glad you found this group.

Iris L.

A camera on the bathroom?  Definitely not!  Both of you need to read about the stages and be aware that more and more help will be needed as time passes.  She will not ask for more help due to anosognosia (read about this).  Be on the lookout for clues to needing more help.  For examples, spending 2-3 hours in the shower.  BTW, showers are a fall hazard--take precautions.  Read about "dementia-proofing" the home.  

I had this same situation in my own family.  My cousin's mil came to live with them.  At a family event, I offered to accompany his mom in the ladies' room.  I realized she needed a lot of help in that area and told him so.  He was reluctant to provide such intimate care to his elderly mom and his wife, my cousin, absolutely refused.  Just be mindful that PWDs need a lot of help and the family does better to be prepared.  

Iris

Not quite caregiver

M1 - so...all those things I've been reading about keeping them engaged with activities is not relevant? I know there's usually a middle ground between what you should be doing according to the experts and reality, but you seem to be saying it is all pointless. Which, to be fair...is kind of how my husband feels about it. 

In regards to the bathing concerns, you are right, he is not comfortable helping out with that, which may be why he's choosing to assume all is well. But - that goes back to my original question - what is MY role? He gets defensive when I question things, so I am choosing my battles carefully. In his estimation - if she appears to be clean (and she does, her hair is washed and there are no smells) - who cares if she takes 3 hours to do it? We have taken steps to improve safety in the bathroom - non slip mats, limited personal hygiene supplies, marking where to turn the hot water to, etc. 

And yes, bathing assistance is one of the criteria for AL/MC placement according to DH - but I think that if I successfully make the case that bathing assistance is necessary now, he would probably look for a health aide. He is convinced (and I have no idea if he is right, I don't know her finances) - that she only has enough money for MC for 5-7 years, and his greatest fear is that we place her in a facility and she runs out of money near the end when we absolutely can't care for her. 

Iris, I agree with you - I wouldn't put a camera in the bathroom. But please don't assume that I haven't done any reading or research though, that's why I'm here - because I have done the work and I have questions as a result. I'm well aware of the stages, and I'm sure you are well aware that everyone meets those stages in different ways and at different times, so making those decisions can be tricky. And in my case, I'm not the decision maker - which, again, is part of the issue. I haven't refused to do anything, I'm just trying to figure out what I should be doing. 

M1

To clarify:  with the camera, I only meant as a one-time thing to figure out what it going on in there, not as a permanent addition!!  Otherwise, I guess you'll just have to interrupt to see.  But you are correct, if the smells and grooming don't tip you off, then she may be okay for now.  But there are also her teeth to think about, etc.

My opinion would be that she is getting sufficient interaction just by being with you all.  Not to be too cynical, but at this stage of disease, I doubt if a lot of "stimulation" is going to make any difference.  Others may disagree.  

Cynbar

In an ideal world, you and your husband would work as a team. You would sit down together for a heart to heart about what he expects your role to be, how much input he would like you to have, and so on. Then you would work out a plan together. But some people don't communicate well, or maybe he is communicating (in his own way) and telling you to back off. If that is the case, I would respect it. I don't think he is way off in his assessments. You'll notice when she can no longer handle her hygiene, or starts with incontinence. At that point, it will be a different discussion.

As far as activities, I think it is more about personality. Some people are social joiners, and do better in memory care because they have access to activities when they were isolated and lonely at home. Others are quieter and more introverted. I know that I would hate being in a facility and dragged out to every activity and presentation. And I agree with others that there is really nothing to effectively slow the progression of dementia, no matter how determined family members may be. If she is not complaining of boredom, I would let her be.

Regarding finances, an elder law attorney could be very helpful with Medicaid planning, although your husband doesn't seem to take suggestions well! Once her money runs out, she should qualify for Medicaid (there can be complications which is why you need an attorney.) In some states, Medicaid will pay for memory care. In some states (like my state of Massachusetts), Medicaid will not. If you live in one that does, pick a facility that accepts Medcaid when her money runs out (some places will accept it after a period of private pay.) But if you live in one that doesn't, she would have to move to a SNF . I am not in any way saying that you should pursue placement now, I just want you to know that the financial part can be worked out if/when the time comes when placement is the best option. 

Not quite caregiver

Cynbar - thank you for your perspective. I agree, in an ideal world, DH and I would be having conversations about this - but let's just say that things aren't ideal right now and we're both trying to navigate as best we can. I waver between trying to be supportive and helpful and trying to stay out of it, and that was the motivation for joining and posting here, I never seem to feel right in either scenario. 

I think that in general it boils down to my feeling that we should be doing more for her, and him feeling like everything is fine. As with most things, the truth is probably somewhere in the middle!

Quilting brings calm

For now, I would say your role is to provide a listening ear, a support for him ( whether he thinks he needs it or not).  Working from home and being with her all day will give him a really good view of things with her eventually.  In the meantime, he’s going to need a break from her and the walls of your home.  Encourage him to take a walk or ask if  he wants to get out and pick up something small at the store. Only if that won’t make him feel stressed though. 

Pick up the book, the 36 hour day, in print.  Leave it on your nightstand where he can easily see it.  Do not mention it at all.  Wait until he asks you and tell him that you wanted to learn more about dementia and even your role in caring for her( and him).  Don’t tell him to read it.  Let him pick it up while you are gone to work. 

Eventually you will find yourself deep in the trenches of actual hands on caregiving.  There is no way for a daughter in law to avoid it unless you actually move out. 

I hope Ginsamae finds this post as she will have some helpful advice for you.

Not quite caregiver

Quilting - I'm laughing because the 36 hour day IS on my nightstand as we speak. 

Unfortunately, DH wouldn't notice a book on my nightstand unless it jumped up and smacked him. (in all fairness, I am a librarian, books on my nightstand are a matter of course!)

Quilting brings calm

Not quite caregiver wrote:

Quilting - I'm laughing because the 36 hour day IS on my nightstand as we speak. 

Unfortunately, DH wouldn't notice a book on my nightstand unless it jumped up and smacked him. (in all fairness, I am a librarian, books on my nightstand are a matter of course!)

Well I guess you need a different spot to put it! Laughing myself!

Rescue mom

Also, I strongly recommend reading “Understanding the Dementia Experience” by Jennifer Ghent-Fuller. It’s about 25 pages, free, and online. You can Google for it.

It sounds to me like your MIL may not need so much direct physical help now, but that will definitely change, and could change fast. Not all want to socialize, as Cynbar said. I think we often think they are bored because we would be bored. But they no longer operate like we do. Many are happy to sit quietly.

I would wonder what she does in the bathroom that long, but if she’s OK, there’s no damage and she’s clean, I’d say “no harm, no foul.” 

I would also echo what someone said about your son. He should be your priority. Caring for a PWD can demand time away from what he needs. Many PWDs find it difficult to be around children and/or act unpleasant or inappropriately with kids, but yours may be old enough to deal. Still hard for a teen.

Incontinence, aggression, and trying to get “away” or “go home” are often the big game-changers, and any one can happen fast.

I’d advise looking into Medicaid now. Different states have different regs, but advance prep. Is crucial. Home health aides are often more costly than a facility, depending on what and how much is needed.

Not quite caregiver

Thank you, I'll look for that read!

I am making my son the priority - he's the youngest of 3, his older brothers have already flown from the nest, and he essentially missed an entire year of being a teenager. Knowing that MIL could be with us for years potentially, I wasn't going to "wait for things to get easier." We travelled quite a bit this summer and fall - I just felt guilty every time we loaded up the car and left DH and MIL at home. 

Right now MIL seems relatively content, if oblivious most of the time. I was warned to be prepared for her to just up and decide to "go home" but for now at least, she seems pretty aware that she can't live by herself. She tells us her "brain is gone." And luckily, she seems okay with our16 yo son, though she doesn't have anything nice to say about her younger grandchildren, her daughter's kids. I think she thinks of them as kids, but my son is adult sized - and she never really knew him as a child, so there's no connection there. 

Iris L.

Not quite caregiver wrote:

Iris, I agree with you - I wouldn't put a camera in the bathroom. But please don't assume that I haven't done any reading or research though, that's why I'm here - because I have done the work and I have questions as a result. I'm well aware of the stages, and I'm sure you are well aware that everyone meets those stages in different ways and at different times, so making those decisions can be tricky. And in my case, I'm not the decision maker - which, again, is part of the issue. I haven't refused to do anything, I'm just trying to figure out what I should be doing. 

I did not assume that you had not done reading or research.  I was trying to discretely make the point that you should draw your DH into what you know.  Perhaps if he saw things in writing, he would be more accommodating of what you want.  

Questions are what members are here for, myself included.  I ask questions and I try to respond when I think I can be of benefit.  Best wishes to you.

Iris

OK2try

It sounds like you are in the middle, and under so much stress! Take care of your own mental health first. Do what you need to do, including activities with your son. Your MIL can't absorb your whole life, and your DH sounds like he's not very supportive or communicative.
Perhaps you could research home care providers and see what's available and whether Medicare will pay for any. You may be able to get someone to come in daily just briefly  to help with the showering, as that seems an immediate danger. That will relieve stress on you all.
Also start researching Medicaid, which will pay for things that Medicare will not. If she has too much in assets, start spending them down, for instance for the home health services. Medicaid  will be needed before the end.
Someone in your family needs to have Power of Attorney, and to be named as Health Care Proxy.
Your local Office for the Aging can help you greatly in finding these resources.

Not quite caregiver

Iris please accept my apologies, I have admittedly been on edge lately and somehow simultaneously feel as if this isn't my job AND that I'm not doing enough. I read you the wrong way and I'm sorry for that. 

Iris L. wrote:

Not quite caregiver wrote:

Iris, I agree with you - I wouldn't put a camera in the bathroom. But please don't assume that I haven't done any reading or research though, that's why I'm here - because I have done the work and I have questions as a result. I'm well aware of the stages, and I'm sure you are well aware that everyone meets those stages in different ways and at different times, so making those decisions can be tricky. And in my case, I'm not the decision maker - which, again, is part of the issue. I haven't refused to do anything, I'm just trying to figure out what I should be doing. 

I did not assume that you had not done reading or research.  I was trying to discretely make the point that you should draw your DH into what you know.  Perhaps if he saw things in writing, he would be more accommodating of what you want.  

Questions are what members are here for, myself included.  I ask questions and I try to respond when I think I can be of benefit.  Best wishes to you.

Iris

Not quite caregiver

OK2try wrote:

It sounds like you are in the middle, and under so much stress! Take care of your own mental health first. Do what you need to do, including activities with your son. Your MIL can't absorb your whole life, and your DH sounds like he's not very supportive or communicative.
Perhaps you could research home care providers and see what's available and whether Medicare will pay for any. You may be able to get someone to come in daily just briefly  to help with the showering, as that seems an immediate danger. That will relieve stress on you all.
Also start researching Medicaid, which will pay for things that Medicare will not. If she has too much in assets, start spending them down, for instance for the home health services. Medicaid  will be needed before the end.
Someone in your family needs to have Power of Attorney, and to be named as Health Care Proxy.
Your local Office for the Aging can help you greatly in finding these resources.

OK2try - thank you. I made an appointment with a therapist for Monday, I'm trying very hard to take care. 

RE: the medicaid, DH says she makes too much in SS, and there's nothing we can do about that. I believe he has looked into it, though to what extent I'm not sure. We are in NC, and I know the laws differ from state to state. He does have POA and the Health Care Proxy. 

Cynbar

There are 2 types of Medicaid, community and long term care. You have to qualify two ways in the community, and be under both the asset and income limits. For long term care, you still have to meet the asset limit but not the income limit, unless your income is high enough to cover facility costs. A lot of people make the mistake of thinking that because they don't qualify for community Medicaid, they won't be able to get long term care Medicaid.  That is usually not true. She would need to spend down her assets first to the limit, generally $2000. As we have said, all states are different (I am in Massachusetts) so you would need to investigate the regs in NC.  The thing to watch out for is that she doesn't do anything to disqualify her for Medicaid if she needs it in the future, like give large amounts of money away (there is generally a 5 year lookback.) I know you aren't thinking of placement now, but if her condition declines and you need to consider it later on, you should learn the requirements so you'll know what her options are.

Iris L.

Not quite caregiver, no one knows much about what to do when they first join.  Fortunately the members here collectively  know just about everything and are willing to share.  This is because they have actual and relevant experience from different perspectives.  Also, it is not uncommon for one family member to do the bulk of the work of caregiving.  Disappointing but true.  

Iris