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.

In the very most loving and fair way for ALL of you, “putting her in a home” needs to “become an option”, and if it doesn’t become an option, you will need to put you well deserved thoughts and reams on hold, and be prepared to sacrifice them altogether.

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.
Helpful Answer (17)
Reply to AnnReid

I can tell you this, my Mom who has had dementia for approximately three years has thanked me repeatedly for "not putting her in a home"...when, in fact, she's in the memory care unit of an assisted living facility. Let go of the guilt that comes with that option. The only way to get some sanity (and probably save your marriage and enable you to move forward with your family) is to consider care options. The burnout is real. I can tell you from experience that caring for someone round the clock with dementia is more difficult than raising children -- you'll be well equipped and prepared, but you'll need the time and sanity (and sleep) required for that.
Helpful Answer (15)
Reply to JerilynG
Mrsrubee Aug 11, 2020
I just LOVE this response! We sometimes forget that they're not living in the same reality we are. I was raised to value the truth above nearly everything else and I absorbed that message well. But dementia changes everything and I have become a facile liar as I try my best to agree with my husband's view of the world. Jerilyn G, you have so lightened my load as I sometimes think of placing my husband in care. I forgot that he is likely to see it totally different than I will and that his quirks could possibly work in my favor.
Why isn't putting her into nursing care an option? You cannot deal with a baby and her at the same time!!! You won't survive! And you won't survive a pregnancy under these conditions. What's the deal with the other siblings? Do they hate both of you? Are you masochists? You need to take care of yourself now or there won't be any children.
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Reply to SFdaughter

You are not alone in feeling the way you feel. I think in years past there was a lot of stigma and fear around placing elderly loved ones in a home, but there have been a lot of changes over the years. More regulations and oversight have been put in place than in years before, family is allowed more visitation and involvement in care, and greater technology (eg. security cams, timed computer logins,etc) make for more detourants for would be abusers and make care management more organized. Maybe touring some facilities to see for yourself would help put you more at ease. She is likely safer in the facility than in your house where there is access to stove tops, knives etc. In the facility she won't have access to things that could harm herself or you all.

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.
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Reply to KimberlyB480

My grandmother lived 10 years at the end stage. She too was healthy other than the dementia, which caused her to not be able to care for her own needs in any way, shape or form.

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.
Helpful Answer (12)
Reply to Isthisrealyreal

First, I wish you both God's choicest blessings for the wonderful care you and your husband are providing mom.

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
Helpful Answer (12)
Reply to OldBob1936

Stress alone, can cause infertility. Think about whether you would really want to bring a baby into the stressful life you are living. Babies are exhausting too, but add to that an elder with dementia, very difficult. What if mom sees the baby as competition for your attention? Does mom have bouts of agitation?

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.
Helpful Answer (11)
Reply to gladimhere

If you can afford it, find a facility to take her to. If you had a loved one with a serious physical condition and needed an operation would you decide to preform it yourself? Dementia is no different. You aren’t qualified to give her the care she needs. Her toilet habits are setting her up for UTIs that can literally kill her at this stage. Both my mother and stepfather died due to their dementia spiraling down due to a UTI. Please do her and yourselves a favor and either get 24/7 professional help in home or find a memory care facility for her.
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.
Helpful Answer (11)
Reply to Jannner

Yes, this illness is definitely awful. I think most people wonder at some point when the end will come for their LO. Admitting the feelings is helpful. So is talking with other people in the same situation, as in a support group.

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.
Helpful Answer (10)
Reply to IAMKHM

Erica, Long story short, if putting her into placement is not an option at all, I have no answer EXCEPT to say, your asking how long this can last is normal, and there isn't a soul on earth who wouldn't ask that, out loud or within.
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.
Helpful Answer (9)
Reply to AlvaDeer

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