Balancing caring for an elder and household responsibilities.

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My wife's mother took a turn for the worse in March with dementia. Cognitively, she knows who everyone is but she is on a feeding tube. Her siblings have been rotating the nursing home with 24/7 someone being there. I support my wife spending time at the nursing home with her mom. But, her two siblings have jobs and barely miss work. My wife had a job and quit due to the way she was treated. She was going to start an online business and we agreed she could try it for 6 months. Well, the 6 months are over and while she did ok to start, the last couple of months, she works an average of 2 hours a day. The rest of the time she has outside of the nursing home, she helps a little with household responsibilities but I would say 30 minutes a day. There are very few discussions/planning either a calendar or finances. When we do talk, she seems to get frustrated that I bring it up. So, we lost her income and now pay for medical insurance which means our expenses went up while the income contribution went down. I feel pretty much ignored when I bring up the fact that medically speaking her mom does not need someone there 24/7 as there are staff there and that she needs to plan ahead so that she has time for work. There has to be more of a balance. I want to be supportive, but I am not able to make up the gap. It is too much per month to make up. I have talked to some professionals but I feel very stuck. I do care for my wife and I feel horrible she is going through this, but I just feel I am stuck with the additional burdens and keep falling behind.


Does she now, seem to get frustrated when you bring it up? Well, well.

I do sympathise, actually. You don't have any input into these decisions but the additional burden has an impact on you. I appreciate the unfairness from your point of view.

So, what do you want to happen instead? Do you want your wife to get a job with insurance cover compris? Do you want her to knuckle down and get her business properly off the ground? And what do you suggest she should do in order to cease fussing over her dying mother and be able to concentrate on her real job?

The thing is, to repeat, I do appreciate the unfairness from your point of view. But you don't appear to appreciate the emotional pressure your wife is under, or to be realistic about how much head space that allows her for paid work.

Your wife is afraid that her mother is dying and that she might die alone and neglected. You will need to understand - really grasp, not just yawn and add it to the to do list - that this is her overwhelming preoccupation.

So, you do the planning. Look at the budget yourself. Add up the numbers and see how much compassionate leave can be afforded. How much longer will your finances stand up? What other resources can you call on? Can you talk to your SIL's and persuade them to commit to, say, Tuesday and Thursday so that your wife has whole days free? Can you cope with the hoovering, perhaps? - and just do it, without comment?

If you want your wife to get through this experience well, support and comfort her. Don't keep reminding her of all her other responsibilities. It really won't help.
I am fully aware of what she is going through. I wish we were in a financial position that she did not need to work.

Under the circumstances, her looking, interviewing and taking a job is not realistic. I get that. She can do some work at the nursing home but the sister in law is actually taking advantage of my wife because she is concerned about her own job. While you might sympathize with my wife, you cannot possibly agree that someone has to be with her mom over night - in the nursing home. There is not one other person doing that there. And then, because of the poor quality of sleep, she has to come home and sometimes sleeps 4-6 hours.

I was working 12 hours a day plus prior to this and I have been able to improve my business since this all happened from buckling down and getting a little more creative. The problem is that while I can be compassionate, there have been discussions about planning or splitting responsibilities and none of the commitments have been followed on her part. Anything time related is 10 minutes here or there. As far as finances, there are no savings outside of retirement to cover this. Zero. The $2,000 for medical insurance is due at the end of the month, I do not plan on paying it as we do not have it.

I also forgot to mention that there is no meal planning. So, in addition to the loss of income and increased expense of medical insurance, we are spending I would say $100 per day on meals.

And, believe it or not, I feel bad about the way I feel. But, I do not see this being a realistic situation financially and to be honest, I am thinking of dumping the house. The lack of planning and communicating has been an ongoing thin for several years.

It seems to me that there should be places that can talk to the family and provide guidance on how to manage day to day. There has to be some realistic way of dealing with both. Her sister and brother are doing it. The brother is suffering from sleep deprivation but he also works overnight.
$100/day for meals is a lot, I'm having difficulty wrapping my head around that. I'm one person and I spend about $65/week on groceries. I have to believe that's a typo.

Having a loved one in a nursing home is a full-time job as I discovered when I placed my dad in a nursing home. And neither my brother nor myself spent the night there. But the stress was unrelenting. Could it be that your wife and your in-laws might be afraid their mom is going to die and they want to make sure she isn't alone when that happens? Is the Dr. telling them that death is imminent?

This sounds more like a marital issue than it does an elder care issue. When I went from caring for my dad at home to placing him in a nursing home I got a job. I had to. And those were difficult months, working and tending to my dad in the nursing home. I couldn't be with him as much as I wanted to since I had to work. He died not too long after placing him in a facility. And because I was at work my dad was alone when he died. It was 4 years ago but that breaks my heart all over again every time I think about it.
What is your mil' s diagnosis and prognosis?

It sounds as though there were communication difficulties before this crisis. Would your wife agree to see a therapist with you?
So, Barb, the original prognosis was bad, 30 days after getting pneumonia on 3/1. They put a feeding tube in and that at least stabilized her. Cognitively she knows everyone and can joke around. She is not walking though but we take her outside like once a week. Prior to the pneumonia, I kept asking my wife, why she would not visit her mother after work. It is not that far, but she would relax at home. I thought maybe she was avoiding seeing her because she could not deal with it. And yes to erishlass, $100 /day is a lot but this is for 2-3 people at lunch and 6 at dinner. The issue for me is that this could be planned better so we are not spending money. I have calmly discussed planning a day or two ahead or making sandwiches and it is like I am completely ignored. She says that makes sense and the next day she is picking up food for everyone. Sometimes we pay and sometimes by brother in law pays. At first, when the diagnosis was 30 days (first 2 weeks hospital), 2nd two in nursing home, I really said nothing. But, at some point there needs to be some new norm established, people need to take showers, sleep, do laundry, buy groceries etc. I posted here as I have tried different methods of communication and see no changes. In my head I have questioned if I should keep my mouth shut, or change the method of communication. Don't get me wrong, she tried to help, but she just randomly does something like go through the mail or clean up a room. Helpful, but I think sometimes there needs to be a plan, discussion, divide and conquer kind of thing. This is the first time I have had to deal with something of this magnitude and honestly do not know how to cope with this reality or get stuff done. Our kids are teenagers but still feel neglected as they are not used to seeing her gone so long. And, the nursing home is 5 minutes away. So, I shuttle the kids from high school to the nursing home, sometimes daily.

This morning we talked and she did say that the lack of sleep and having to be there all the time is a burden to an extent because her sister is not helping. So, I just suggested that maybe they try and find someone to stay a night or two a week so at least people can balance out the sleep. I think it is hard to help anyone if you cannot help yourself first to an extent; eating, sleeping, stress free activity? I have taken care of myself and have been able to be a better listener to the kids and I hope they find that supportive.
First, how old is your MIL? Why the feeding tube?
Second, I sympathize with you. I think the 24/7 is unrealistic. Not trying to be hard hearted here but she could leave to get a bottle of water and her Mom passes away. And the SIL should back off. I hate when in-laws take over. The woman's children should be the ones involved with Mom's care and the spouses can support the decisions. Can even help or suggest but in the final outcome, the children should make the decisions. Is there a way you can get away for the weekend? Maybe a sit down with your wife, tell her you understand where she is coming from but you need that second income. If she worked p/t, would that help? Once you both come to somekind of compromise, you need to get her siblings together, no inlaws. Say that you understand the pressure they are all under but like them, your wife needs to work. Being at Mom's beside 24/7 is just too much for any of them. I've said this before, I really don't think we die alone. I really feel a loved one comes for us.

You may need to find a professional who you both can sit down with and air your feelings and help with that compromise.
MIL just turned 80. Sister in law is actually the daughter. The staff at the nursing home all roll their eyes when they see her coming as she tries to be controlling and bossy telling staff and family all what to do. Nobody listens. The concern I have with 24/7 is their mother did not want to be left alone. That was fine when they were told she has 30 days. But, at some time, a transition needs to take place and everyone still has to move on with their lives. And, I am not trying to be selfish either. But, it is not healthy to be in a nursing home in a private room with 7-10 people most of the day. My wife did a beautiful job of decorating the room and we set up music and a essential oil diffusor, family pictures, momentums etc. IT seems to reduce agitation when she thinks she is in her "other" apartment.

She could not swallow food properly. The flap in the throat that sends the food in the correct place failed and this is considered late stage dementia. Everyone at the hospital did not want them to give that to her. I have a feeling it is more a quality of life thing for doctors and nurses. Medically speaking it should not extend life. But, she has color back in her face and has more strength. Not a lot , but enough to tell me and everyone else where to go when the agitation sets in. And, it gives time for the grandchildren and children to create some more memories. This is now 2 1/2 months and she could be certified for hospice which means 6 months or less but there were some services or a timeline or something that it did not make sense for hospice so they just use a palleative service to help out.

We have talked on several occasions and she verbally understands what needs to happen. A Part time job would really not help at this point. It is almost too late. We had been letting our house go over the years and that is only getting worse. What I told her, is that if she could help with some of the day to day responsibilities, then I can be freed up a bit and hopefully get my business up a notch, which I have done since right before this happened. She quit in November, because her boss was extremely mean and making up lies about my wife, so we sat down and felt for her mental health it would be best to leave. It was a very hard decision when you give up an income and medical insurance. But, she had to come first.

My wife gets focused on the immediate day, maybe the next few days. But, she really does not think longer term. And, to be honest, any planning seems to be frustrating for her and she snaps. Then she apologizes later, but I think she has anxiety and it creeps up when trying to deal with reality/life stuff/more than one task at a time.

Today, I scheduled every possible service I could that was on my todo list so we can get the house in order. Got the car detailed because knowing the stuff is done is honestly better than having to look at it.

What is even worse is her father who was fine got diagnosed with moderate Alzheimers yesterday so now they need to run more tests on him.

I definitely think we need a professional to talk to. Maybe if my wife and her brother hear it from someone else, they will make some adjustments (leaving the other sister) out of that conversation though. I do not want to be the person saying you cannot spend so much time with your mom. I would have to live with that the rest of my life. I defintely feel in the middle and it is very hard. I am glad I was able to find this discussion board today and at least share what is going on. This is not the typical conversation of the day at the local coffee shop.
Hope you can work it all out. Give her a hug and tell her u love her.
I think when we "kids" hear that our parent has a life limiting illness and time is short, we go into crisis mode. When it becomes obvious that death is not imminent, you need to go into planning mode.

Your wife hasn't made that switch. Nor does it sound as though she has capacity to make it right now; lack of sleep, underlying depression (it sounds like there were issues, both in her life and in the marriage before this health crisis), yes?

Do you not know how to prep and cook simple meals? You've got HS age children; cooking together can be fun and you can make casseroles, lasagna and other large meals on the weekends and freeze ahead.

Rather than "putting your foot down" and thinking that you're saying to your wife that she can't spend so much time with her mom, you need to couch this as : honey, you need your sleep; the kids need to see you at home and not so stressed. It looks like your mom's death is not imminent; she's going to die on her own schedule. You could walk out of the room to go to the bathroom and she could be gone. You need to shift into non-crisis mode".

This is doubly true now that her dad has been dxed with dementia. You need to be able to do this for the long haul.
Barb, I think you are spot on with what my wife is going through and today was making calls about services available for her dad, an MRIblood test. I am glad she made the calls. I just wish they would have been made a month before when we had an idea something was up with him.

Interestingly, now that she knows every room in the house is getting carpet cleaning, she told her sister she could not be there the day the carpet people are coming so she could be in the house and she arranged her schedule to move things around before they came and all I said is we need to get things off the floors by Monday.

I might do something with meals but it will have to be simpler than that. I have been going on 3-4 hours of sleep keeping up with other day to day things and trying to get more money in the business. I could maybe do grilled cheese. I do not have the patience to plan and cook. I wish I did. It is nice out and the kids can both grill so we can do something like that a little more.

Some days are ok and others are just so frustrating. I hate to see her going through this but hope she starts to realize she needs to do more. The frame of mind she is in, it is also hard for her to be concerned about paying bills as she actually worries about how she is going to make it without her mom which is why the first month I kept my mouth shut and just asked what I can do to help or help without telling her so it was not expected.

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