Ugh. My stepfather is going through the same thing with his elderly parents. They sit in their house all day, miserable with themselves and each other, but they can't (and won't) go into a home together because they don't have the financial resources, so my stepfather and his sister take turns going there every single day to make food and bathe them. He gets depressed being there. My mom, on the other hand, feels sorry for him but not for them. She thinks they're selfish and don't truly appreciate all that is being done for them. It's a tough situation. She is not the caregiving type, so she rarely goes with him (and it makes her physically ill to be in the stinky house and see the way they just "exist").

I would say let your husband know you are there for him, but that it is his choice, not yours, to take care of her. You will support him in whatever way you can, but that you are not going to partake in the caretaking because it is your choice not to. When he's ready to discuss alternate arrangements for her, let him know you will be there to assist him. You need a boundary to keep your sanity in all this. Good luck!

Hi,

Wow, that sounds like a tricky situation. I think I would encourage him to try to get some help with his Co issues. It sounds like your husband wants to do the self-sacrificing for his mom, but did not understand what that meant and now he is resentful? I have not been a caregiver like that, but I have made bad Co choices to be the "nice" person, even though I was resentful doing it.

If you encourage him to focus on his own issues, perhaps he will come to the realization that he does not need to be the primary caregiver, especially if his mother has dementia.

When my grandmother was failing and needed to go into a nursing home, my father, her only child, was getting pressure big-time from the extended family to take care of her. At the time, I was in therapy. I told my father him that my therapist told me, if there is something that we absolutely do not want to do, just say, "I cannot do that". And do not give any further explanation. That is what he did. He did not want to take on a 24/7 caregiver role.

My grandmother ended up in a nursing home where there was 24/7 care. It was good for her and it was necessary for my Dad. Even when he visited, he would often "mark time," waiting for an appropriate amount of time to pass before he left. They did not get along superbly.

Good luck,

Shar

I am really glad to find this site and people who are going thorough the same situation. Gave up (nobody put a gun to my head) 6 figure income, was working toward a system were mom would have an at-home caregiving staff and money came suddenly to an end. Her assets, unbeknownst to me, had been tied up by my older brother, after she left surgery. Now my income went from $10k a month to $600, no savings left and brother said he would help if i left. I had nowhere to go, nor funds for an atty. and not knowing the "system" it has been quite an adventure to survive, specially for the last 9 months. From fear, depression, anger, resentment have come to a place where most days flow easily and I an now attending several programs. curiously, my old employer is looking for me. I havent worked in my field (I work 24/7 taking care of mom) for 20 months and since I was an independent contractor no income. Finances has never been my specialty, but I am happy to report that four doctors have said that mom is now better than two years ago.
Nonetheless, I can see how brother, has set me up for failure and has not visited his mother for almost a year, all he does is send me through his atty intimidating letters saying that I used my mom 's assets. She chose to use her reverse mortgage to enjoy trips and i agreed, prefering that the half that would goto me- she would spend on her enjoyment. I lost track. Good news though, is that my employer is seeking me out again and I feel that I have given my mom the best, shell be 84 in a couple of days, i am 61 and barely seeing the unhealthy part of this dysfunctional family system. Brother, an M.D. golden boy - I the scapegoat, I can take it type. I do not want to abandom mom, but do want to get out of the system . thanks for reading this. I finally have a place that combines codependency with dementia

Brett wow that sounds rough but it sounds like you are doing remarkably well considering everything. It is SO common for siblings to be ambivalent or down right negative. I have NO idea why but know that it's true. It's so important to balance self and other needs for the caregiver. My h has a hard time with that for sure. I always say remember what your parent would have wanted for you when they were at their prime. It's hard but so important to have healthy balance - or the whole thing falls apart. Kudos for your efforts I know how hard it is.

Wanted to say Shar how impressed I was with how you handled that situation - inspiring.

Having a parent with dementia is exhausting, especially if one is the primary caregiver 24/7. I recommend you (or your husband) come over and join us at the Dementia board. (that's how I discovered DS -- I was looking for support re. mom's dementia.) A lot of people there who are looking for support, who are upset, frustrated, angry, and burning out due to the irrationality of their loved one. Taking care of someone with dementia IS a full-time job -- unless you can afford a private aide or a good place that will attend to their needs.

Although you cannot control your husband, you can offer up suggestions as you are married. You do not have to be a victim to this (having given up your home to move in with MIL). I think of a marriage as "a team." As such, you work together to come to a mutual agreement.

I hear that you're frustrated with being the breadwinner and he's frustrated that you cannot offer more support. He's venting his frustration and anger onto you. And you're trying to maintain boundaries, while allowing him to care for his mother as he sees fit. But it sounds like you've bent over backwards and "broke down" --feeling like you're losing your mind and cannot do more.

Dementia is Relentless. It is Tiresome. It is Exhausting. It robs our loved ones of their logic, it makes them paranoid and agitated, it can cause them to hallucinate. It makes them confused. They need much redirection to eat, take meds, support with hygiene. They are essentially a toddler, who looks like an adult and has opinions of an adult.

In defense of your husband, please understand that unless he had previous experience with this -- he didn't know what he was in for. We have expectations that everyone will rally around us and support us. We have no idea that the Reality is very different from our own Rose-Tinted Glasses. Clearly he's discovered this if he's now allowing supports in the home to help with his mother.

According to the book, "The 36 Hour Day" (p. 294): "Most people first turn to family members, friends, or neighbors for support and help.... Family members sometimes disagree or don't help out, or you may hesitate to ask others for the help you need. In Chapter 11 we discuss some ways to handle family disagreement and to ask for help."

I wanted to be my mother's primary caregiver. My sister's would not allow it. We had private aides instead. Sometimes I projected my futile rage about this situation on the sisters, sometimes on the aides. I didn't like how people did things. Some of my concerns were very valid, like when I found serious medication errors every week, or found an aide sleeping on the job. I was frustrated that I couldn't communicate with my mother's Doctors directly (my sisters would not allow it; rather, they paid someone to be mom's medical advocate).

But I also came to understand that my mother was so needy, so paranoid, so irritable, so demanding, that there was No Way I could be her caregiver all the time .... she would drain me in no time flat.

Even now, now that we have her in a fine Personal Care Facility, I still can only deal with Mom's level of insanity/intensity for a few hours at a time (My mother has a complex case of Dementia and Mental Illness).

I suggest that you 2 work together as a team. This is not "enabling" -- but rather, a self-protection measure. As your husband begins to burn out, he's going to displace his anger (at the pain of his mother's irrationality and your inability to be present all the time) and stress (about losing his mother as he knows her) onto you. That's a "Lose/Lose" Situation.

Start by getting the book "The 36-Hour Day" (Nancy L. Mace/Peter V. Rabins) -- it is a great book and an easy read (trust me, I have reading comprehension issues, so I know) and very informative stuff. Share the book with him. (Maybe you each have your own bookmark as you take turns reading it -- I read according to the topic/index -- it's easy to skip around and find the topic I'm most in need of reading at the particular moment.)

Maybe start to open up discussions about possible alternatives to the current situation. It sounds like he's already agreed to having an aide come in, so he can get a break from his mother? Would he be willing to join a local Caregiver's support group? Bring home literature about an establishment or additional services, if you think he's starting to be open to that.

He is so in the "thick" of it, your husband is not going to be able to focus on his "codependency" issues. Trust me. It takes a lot of energy to deal with a crazy mother and a crazy family. Head is spinning so much, it's hard to remove the focus from "under the microscope." His "bottom" is simply burning out, taking his anger out on everyone (including his mother) and that can and will jeopardize your marriage.

People can be destroyed by this caregiving role. No joke. Some people resort to alcohol or pills to numb their pain. (Page 403): "Anger and frustration are normal responses to caring for a person whose behavior is difficult. However, if your anger begins to spill over into many relationships or if you take your anger out on the person with dementia, it may be helpful to find ways to manage your frustrations so that they do not drive people away from you or make the impaired person's behavior worse. The thought of suicide can come when a person is feeling overwhelmed, helpless, and alone..."

He's too close to the situation. The book is a good first step. It answers a lot of questions and concerns re. Dementia, Caregivers and Alternatives.

((Hugs)) Good Luck!

Thanks amelah. Really appreciate the response. He does belong to a support group but they meet maybe once a month (!) I need support every *day* lol so I don't know if that's helping him or not. He says joining an online board isn't for him. He doesn't like to talk about things but says other things help - like getting out into nature and bringing in supports and me helping. I think he's taken on too much and even the stress of living with her without the dementia would be too much imho. I know it was for me when we lived with her before while waiting in between apartments.

yeah, I have a mother who is like that, too. She was no picnic before dementia set in. Now she's just got a "good excuse" (if you don't mind me saying -- sounds harsh, but there it is).

the Alzheimer Association should have a list of support groups in your area -- it's worth calling them (they can also offer support over the phone to you and/or your DH) .... One meeting a month is Nothing. Real Support Groups meet once a week.

((Hugs)) Good Luck!

Thanks Amelah, we will also be making an appointment with a social worker, I hope he can open up there. He's a classic codependent, buries things so deep he has no idea what he's feeling until it bursts. And he has always been unrealistic when it comes to what he sets out to do. Very sad :( I hope I can help, but I'll have to keep reading "Codependent no more" to see how I can do so without enabling.