We have been caring for MIL at home for the past 6 years who needs around the clock care because of dementia. We have managed to share responsibilities with other siblings/ caregivers but most of the responsibility falls on us as I am married to a middle child who was very close to his mother. LOVE THE MAN! We are in our mid 30's and lower 40's. and still building a family. We have infertility issues that have not been addressed because of all the time this illness has taken from us. Finally husband and I are getting treatment and will be soon starting a family . THANK GOD! We cant afford to stop working so I am a little concern about the future, our relationship, bringing a baby to the world in this situation.
We have so much in our plate but at the same time I am getting older and dr. advise my egg count is very low so we need to hurry up. This puts more pressure. Putting her in a home is not an option . There are times he goes into her house for 2 weeks because the other siblings cant cover. This of course brings a lot of stress.
What I would like to know is the following:
1. Has anyone try to raise a family, work and care for a dementia patient at the same time? How? Results?
2. How long can we expect her to be around? Is it bad that I even think about this? Feeling guilty.
She has been wearing diapers for the past 2 yrs and needs everything done for her. During the night she will not sleep and will talk nonstop which is making caring for her very difficult. Sometimes she does not want to eat and is losing mobility.
-No other health conditions
3. How can we manage her sleep pattern better without increasing medication and what are the consequences ?
4. How do you reduce her having to pee so much at night? We put a tick pad inside diaper, she will still wet the bed and then take diaper off and pee more and sometimes the #2
5. How do you keep your sanity?
6. How do you set healthy boundries and admit your limitations?
This illness is the worst. I married the love of my life at age 27 and for the past 8 yrs have supported him through his mom's illness but I also belive he needs a family for when she is gone and don't want us to lose that opportunity and fall into bitterness later. Will appreciate your advice.
You say it is not possible to move mom to a facility. Why not? You and hubs have done plenty and have too much responsibility for her. Time to shop for a facility for mom. You and especially the baby deserve the comfort of a home that is as free of stress as possible.
I see on another point st of yours that it is our responsibility to provide the best care possible to our elderly. Is that what mom is receiving? She is being taken care of by two people that are exhausted from the day to day caring and the other responsibilities of stressful jobs and life. That is very likely provided in a facility where the day to day is for the trained professionals and advocacy is for family.
As I said, without placement I cannot see an answer. You gave us a stage and I guess someone out there in google-land will have some charts and grafts that will guess at the amount of time that is left, but the truth is no one can really tell you. If you want a guess the people who work with her medically would be the ones to give the best guess-tamite. And I doubt they would be too shocked at the question: "In your professional opinion what sort of timeline are we looking at".
I cannot imagine bringing a baby into this. There are things you cannot know until you have been there about sleep deprivation, hormonal stuff that can sometimes cause severe depression; it isn't all joy, and the frustration may bring you to acceptance to know that you are not without limitation.
I am so sorry you are facing this down. I DO know my limitations. I would not have lasted a month caring for a (even much loved) elder on my own, and I spent my career as a nurse who LOVED my profession. So sorry for all you are facing.
They get to a point that they really do need a village to care for them. I would not decide that a facility is completely off the table.
SO- deal with “guilt” which, when you think of it, is a totally useless and damaging reaction to circumstances that will continue every day to become more unmanageable, as Mom’s needs increase.
As I’m sure you will have previously been told, there are many factors to infertility, and adding stress is never a good idea. And you WILL feel bitterness if you don’t address the reality that the time is approaching when her care needs to be undertaken in a safe place where they will be met by trained specialists.
Sometimes the IDEA of not placing a LO can exceed the reality of what home care inevitably becomes. You may already have reached that point.
The questions you are asking have no reasonable solutions within the structure of the life you are looking for, and are entitled to.
Ask yourself and then ASK YOUR HUSBAND- if she were aware that a grandchild would not be born because of your current responsibilities would she want you to continue as you are?
Last point, when caring for a significantly disabled LO, you sometimes co e to a point at which there are NO PLEASANT DECISIONS AVAILABLE. What you then must do with love and respect, is to choose the least bad decisions of the bad ones.
I had 2 cherished children after the age of 38, after a long terribly difficult infertility history. Please consider my comments carefully.
Aside from the splendid care you both help provide, I agree with others that she MUST go into a home. If the long pole in the tent, aside from your emotions, is how to fund putting her in a home, then whatever her assets are, including selling her home, should be exhausted, and then she should be placed on Medicaid. You will need a qualified eldercare attorney to help you with this. (I say qualified, because in my family's case, I spoke with three so-called elder care attorney before finding one who knew precisely how to handle this work. The first three just didn't know enough to be of any help.)
Emotions are sometimes nearly impossible to handle. We must learn to separate how we feel from what we do.
I wish you both god speed in making the situation bearable.
Grace + Peace,
Bob in North Carolina
If its a money situation that makes the option feel impossible, there are a ton of programs out there that can help. Look into your local Area Agency On Aging and ask about resources for funding her placement care or just look into your state assistance web pages and I am sure you will find more options.
We all will grow old one day. I know I would never want my need for care to rob my daughter of her chance for a family of her own. Would you want to do that to your future child when it's your time? I believe, like all the others here, placement is the right move for everyone. Just need to get more educated about it so it doesn't feel so unsettling.
If you look at it logically rather than emotionally the fact you are having a hard times means the situation is beyond your ability. That’s not a crime, that’s a normal limitation. We all have them.
I'll be frank: Yes, your MIL has all the Alzheimer's/dementia signs that all caregivers struggle with and have to make decisions about. But your biggest issue is your husband. He has put caring for your mother before your life together and it's negatively impacting any long-term plans you have/had. In fact, his need to care for his mother is pushing your plans off the page. Does your husband even want to have a child right now or is this your dream? I would suggest some counseling for the two of you to sort this out to be able to determine what lies ahead for your life together and if a child is part of that future.
Your MIL needs 24/7 care. She could greatly benefit from being in a community that provides her with this. The stimulation of others around her may actually be beneficial. If not a MC, then night-time caregivers at home so that you, your husband, family are not up all night with her. Has she been evaluated for a UTI that may be causing increased problems with urination?
There are no easy answers here except to start digging past what's happening with your MIL to prevent the bitterness you're afraid will creep into your life.
An elder who needs 'everything done for her' as stated will have to take 2nd place to a baby. She may accept this??? but also may become demanding/jealous/act out. Nap when baby naps - how will that happen? Overnight feeding? Crying baby disturbing MIL or MIL disturbing the baby?
I suppose it worked in the last century so I suppose it could work... but I would look for another option. Your MIL needs care. That does not mean you have to provide it 24/7 & forgo your future.
My parents are 95, living in their own home with caregivers who are a mixed bag. Parents refuse to go to facility where i believe they would get more consistent care-cheaper than home care. My mother refuses to consider the health of my father and what can be done to help him. My mom does not consider how much time i spend with them and doing stuff for them. I have been keeping track- ranges from 5 to 15 hours a week. Now more time needed as dad is in the hospital-mom does not drive-i take her to see dad. One other family member does not do anything unless is convenient for him to do so-will not even answer his phone when he can see it is mom calling. Mom is has her fantasy that dad is great strong healthy. not true has many issues and been in the hospital 4 times since october.
I am always exhausted I had a short time out due to covid-in the beginning.
I felt like my normal self able to do for my family etc.
Mom says horrible things to me -like i know you (me) wish they were dead because it is so much work all the time and worse-while also laying a guilt trip on me about i am supposed to take care of them. I am positive she does not say this to the other lazy sibling with no job and nothing else to do all day except whine a out his life. If you can possibly find some kind of balance-do it and do it now-boundaries are hard to maintain the line seems to be a moving target every single day.
It will be a shame if Erica, at the age of 50 and childless, sits around wishing her MIL had been in a facility during the years she could have spent giving birth and rearing a child!
It appears that MIL may need to see a doctor about her sleeplessness and nocturnal urinary issues. I would also suggest that it may be time to hire care for MIL during the night, and probably the days when everybody is working. Another option is probably a residential memory care unit since she seems to require more care than is allowed for adult day program or assisted living.
Take it 1 hour before bed time, it helps reset the body clock and seems to work well. Not sure with advanced dementia but worth a try and don't think it can do any harm. Was suggested by neurologist.
Once, in this so called 5 star facilitiy, I was with my mother and they told me that I could not help her to the bathroom, we had to call for assistance by an employee. Well we pushed the call button and NO ONE showed up for 2 hours. I ended up taking her to the bathroom my self. Then at another facility I went to see my mom early in the morning from just admitting her the night before. As I was walking to her room she was in the hall in a wheel chair, crying, shivering in just her thin nightgown. As I got to her she held me so hard saying "PLEASE, GET ME OUT OF HERE". That afternoon I had her back home. And this happened with several other facilities, one that let her fall and get massive skin tears, another that when she fell in the bathroom and after no one came to help her, she tried to get to the bathroom herself and she fell and was laying on the bathroom floor for hours before they checked on her!
Again, I can not say it enough, IF YOU LOVE THIS PERSON THEN PLEASE DO NOT PUT THEM IN A HOME OR FACILITY!!! These places are where you send people to die, alonely.
There were 3 local places, but one was what I think is called continuing care. These require a HUGE up front payment in addition to monthly fees. To this day I don't understand what that payment is for - it isn't used to cover the monthly rent. I crossed that off the list immediately. The first of the other 2 was less than ideal. I didn't care for the layout, and in particular was concerned that the MC unit was on the 2nd floor - in an emergency, when the elevator can't be used, how do you get all these dementia patients, many with walkers and wheelchairs, out? Nope. Before we arranged to see/inquire about these 2, YB found another. It was nice, newly built, just about to open. It was more the location, room setup and cost that took this one off the list for me. Sure, it was about 5 min from where he lives, but more like 40m for me and I already KNEW I would be the one doing most of the advocacy (supplies, payments, visits, etc.), so the distance would be an issue, esp in winter. The location and view was awful. The room we were shown for the quoted cost was SHARED - 2 BRs, one bath, no closure AND looked out over the parking lot and 4 lane roadway. The last place was still in the process of being built. It had been really old buildings and the decision was to tear down and start new. We could see the pix, ask questions, etc. The deposit gave us first choice in room location (all look out into an interior garden) and was refundable. We went to the open house with mom, and later for a special tour (they opened in stages, IL, then AL, with MC being a bit delayed until they had a few residents lined up.)
This place is private pay and mom has been there about 4.5 YEARS. It is nice enough that if I were to need such accommodation, I WOULD want to go there. The staff is great, the place is clean and nice. I wouldn't hesitate to recommend it to anyone!!! I have no idea what their "rating" is and I really don't care. I can SEE for myself that it is a very nice place.
So, relating your own bad experiences can be helpful, IF you temper it with guidance to LOOK at the places yourself before making a decision. Please stop painting all facilities with the paint from hell.
(BTW, I tried bringing in aides, just to get her used to it so we could let her stay in her own condo for as long as possible. 1hr/day M-F. This didn't last 2 months when she refused to let them in. YOUR alternative might work for some, but there are MANY reasons why I can't care for my mother - logistics, her weight, and my place being stuck mid-way through renovations are among the top. She is doing VERY well in the place and they are doing what I could NEVER be able to do for her.)
That said, in your case I dont know how you can or can be expected to keep this up. You have your own work and family planning issues to deal with and hopefully then little kids in the house
I would think for everyones benefit, including your moms, she has to be put somewhere who can give her the care she needs. I was very close to my dad and wanted to keep him in his home with my mom but my mom didnt want that and even though I said I would help a whole lot, to be fair it would be her burden and decision.
I guess the point is I know what your husband may be feeling, may a sense of duty to care for mom until the end and perhaps feeling putting her in a facility would be a sense of abandonment. I felt those things but NO one in this scenario can go on like this without losing sanity.