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PWD and DH clash. Time for $$$MC?
Mom4All
Posted: Wednesday, June 3, 2020 12:08 PM
Joined: 5/3/2020
Posts: 7


Please let me explain my situation; I'm sure it is not unusual here, and I could use help on knowing how best to proceed.  My husband and I are extreme DIYers.  We farm, homeschool 3 kids, and recently moved my mom into our 2 br home.  My job to to care for them all.  Because husband works at home, he helps with the children, so we manage well with the exception that DH prefers not to be in the same room with my mom, ever, not even at meal time.  He is completely intolerant of her and why he ever agreed to have her move in, I will never know.

Now you can understand that if DH and PWD clash, this makes life very awkward for me.  To care for both husband and Mom feels impossible and leads me to believe that either one or the other must go. Not wanting to risk my relationship or loose my kids to him, I feel that my duty to husband is to put mom in the Memory Care unit at the local Assisted Living facility, never mind my preference to avoid the exorbitant MC fees, trying to retain some inheritance for the children, and give mom personal care.  Having mom's help with finances also makes ends meet, slowing me to be home to homeschool etc instead of working in town.

We moved Mom to our town 5 years ago, and into our home six months ago.  Looking for a long term solution, we think of adding on to our home, but knowing that Mom wants to be in the same room as caregiver, me, at all times, I do not have the opportunity to be with husband as he self isolates when she is around.  

I realize that this problem is surely not the worst one that anyone has ever experienced but I am so torn, as satisfying all parties seems impossible.  I don't want to be selfish by living as if my choice to house mom has no negative repercussions.  The stress to us as individuals and my on marriage is too much to bear, yet, I can't accept the price tag of moving mom into a home.  I am an only child and don't have family nearby who can help.  Your thoughts and prayers are appreciated.

 


Jane Smith
Posted: Wednesday, June 3, 2020 12:37 PM
Joined: 3/23/2015
Posts: 105


I wanted to say hello and welcome, and sorry you have to be here. Dementia is really hard and it doesn’t just affect the person with the disease. Caring for someone with dementia is just hard!

So you have a lot going on. Kids, a farm, your mom, that’s a lot. 

The hard truth is that providing care for someone with dementia, especially in your/their homes will take all the time and energy you can throw it at, and the dementia will still demand more. It is not a job that one person can do alone, 24/7, forever, without repercussions. There is a reason why facilities have all those employees. Just the physical care alone, especially when incontinence and feeding and bathing are issues, is enough to break a single 24/7 caregiver. You have to sleep. You have to eat. You will sometimes be unavailable (sick, out of the house, broken arm, who knows) and so I am going to encourage you that you need to plan for help and backup, more than you think you need and sooner than you think you need it. 

Because dementia is progressive, things are always changing. Care needs change, safety needs change, medical issues change. That is hard to keep up with when you have other things to do (job, family, life, your health) and especially if you are already the caregiver to your kids and husband. Double especially if your husband has health needs that require your assistance, as it sounds in your post. Apologies if I read it wrong and if he is healthy, great. 

It’s hard to know where to draw the line and I wish you the best of luck. I wonder if a therapist or support group (both are available online because pandemic) would help you to identify the issues and sort them out for yourself. I would also suggest a calm discussion with your spouse about how you both see caregiving for your mom now, and in the future. There are a lot of ways to get help and support but it depends on what you are open to. 

A note on finances: your mom should pay for her own care. If you are in the US, talk to a certified elder law attorney about this and how to manage things.  Yes, care is expensive but sometimes it is what is needed. 

Don’t let the dementia take you down with it. It will, if you let it. Good luck. 


jfkoc
Posted: Wednesday, June 3, 2020 12:55 PM
Joined: 12/4/2011
Posts: 18487


Hi and welcome mom4all

Mom 4all explains a lot. A hurband, 3 children who I assume are yours and a mother in two bedrooms and possible one bathroom. I could not pull that off and applaud if you can but.....

I would place my mother and when doing so make certain that the facility would care for my mother until she died. Ask to see all forms they filed with the state to obtain a license. We just had a member be told that their loved one was to much for them and that she would need 24/7 additional care.

As to the money I would look into Mediaid. Your best bet is to do a lot on online work and then meet with a certified elder care attorney.

None of that is what you want to deal with and I am sorry. This is not an easy road that you are on but this stressful situation is detrimental to everyone in  your home including your mother!

Please keep us in the loop.


star26
Posted: Wednesday, June 3, 2020 2:12 PM
Joined: 2/6/2018
Posts: 286


I agree with the previous posters about this situation being both unsustainable and detrimental to your Mom and family. 

Unfortunately, the dreaded disease of dementia often means that the PWD's $$$ will be solely and completely spent on providing for his or her care, leaving no inheritance. In addition to accepting this, as hard as it is, you can also look at other options that may allow you to be a stay-at-home Mom besides caring for your Mom at home and relying on her financial contributions. If you can uncouple these two separate issues (your Mom's living arrangements and your desire to remain a homemaker and homeschooler ) it may make decision making clearer and easier. 

 


harshedbuzz
Posted: Wednesday, June 3, 2020 3:14 PM
Joined: 3/6/2017
Posts: 2213


Mom4All wrote:

Please let me explain my situation; I'm sure it is not unusual here, and I could use help on knowing how best to proceed.  My husband and I are extreme DIYers.  We farm, homeschool 3 kids, and recently moved my mom into our 2 br home.  My job to to care for them all.  Because husband works at home, he helps with the children, so we manage well with the exception that DH prefers not to be in the same room with my mom, ever, not even at meal time.  He is completely intolerant of her and why he ever agreed to have her move in, I will never know.

I'm going to be blunt here.

You are not serving anyone well here. I don't know what sort of drama transpired in the past between your husband and your mom, but whatever it was, she deserves to live in a place where she is not exposed to open hostility. Her memory may be shot, but many PWD retain considerable emotional cognition well into the disease. She likely knows how he feels which is just heartbreaking. 

Now you can understand that if DH and PWD clash, this makes life very awkward for me.  To care for both husband and Mom feels impossible and leads me to believe that either one or the other must go. 

That is what your husband seems to be saying with his actions. I have not been asked to make such a draconian decision, but I would have problems being married to a man who treated my family with such derision. My own husband justifiably loathed my father and while we didn't move him in with us, he did whatever he could to have my back. He'd drive us to appointments and blithely listen to his insults and model behavior that taught our son valuable lessons about doing the right thing even when it isn't your responsibility or you don't want to. What must your kids be taking away from this atmosphere?

Not wanting to risk my relationship or loose my kids to him, I feel that my duty to husband is to put mom in the Memory Care unit at the local Assisted Living facility, never mind my preference to avoid the exorbitant MC fees, trying to retain some inheritance for the children, and give mom personal care. 

It sounds as if your mom would get better care in a MCF from a well rested team of professionals than in your home. Her money is her money until she is dead. Allowing her to be actively disrespected by your husband to preserve assets might even come under the umbrella of elder abuse. 

When a LO is in a MCF, you would still have the opportunity to be a hands on caregiver when your schedule allows while being able to focus on your husband and children the rest of the time. I get that it is an eye-watering amount of money each month, but there doesn't seem to be any other option. I would consult a CELA about Medicaid planning asap and find a place that will accept her as a resident and can convert her to a Medicaid bed when her assets run out. 


Having mom's help with finances also makes ends meet, slowing me to be home to homeschool etc instead of working in town.

Her money should be for her care.

We moved Mom to our town 5 years ago, and into our home six months ago.  Looking for a long term solution, we think of adding on to our home, but knowing that Mom wants to be in the same room as caregiver, me, at all times, I do not have the opportunity to be with husband as he self isolates when she is around.  

I realize that this problem is surely not the worst one that anyone has ever experienced but I am so torn, as satisfying all parties seems impossible.  I don't want to be selfish by living as if my choice to house mom has no negative repercussions.  The stress to us as individuals and my on marriage is too much to bear, yet, I can't accept the price tag of moving mom into a home.  I am an only child and don't have family nearby who can help.  Your thoughts and prayers are appreciated.

It sounds like a pretty bad situation for your mom and probably for your children who have a mother who is stressed out and unhappy. 

 



MN Chickadee
Posted: Wednesday, June 3, 2020 3:52 PM
Joined: 9/7/2014
Posts: 1034


I agree with other posters. Your mom is sick. To have a PWD living in a home with someone who is completely intolerant of her and the symptoms of her illness is not going to work in the long run and is not fair to her. She can't help it; her brain is damaged. Your husband can. Given how much you have going on I would also think hard about what is fair to your children. In a 2 bedroom home  you will not have the space to shield them from the aspects of dementia that could really leave a scar on kids. They are only young once, and deserve your attention and care. If your DH is not going to step up and help you with caring for mom, you will be stretched extremely thin. Educate yourself on the course dementia takes. It is beyond a full time job once the night waking, incontinence, shadowing the caregiver, loss of constructive pass times, and so many other things set in. People who do it at home are usually successful when they have a team and a decent physical space. Often consisting of a home or property that is large enough to spread out and have privacy, and supportive spouse, siblings, and hired staff to fill the gaps. That's not to say it can't be done in other ways but it is uncommon and very taxing.  Back breaking, exhausting work. I would move her to MC near you. Speak to an elder law attorney; they can help you get set up so she can go on Medicaid when her money runs out. Her money is still hers and you need to have advice on spending it, or else it could really complicate her ability to get on Medicaid when the time comes.
Victoria2020
Posted: Wednesday, June 3, 2020 5:19 PM
Joined: 9/21/2017
Posts: 334


6 people in 2 bedrooms, eeps.

 

"I feel that my duty to husband is to put mom in the Memory Care unit at the local Assisted Living facility, never mind my preference to avoid the exorbitant MC fees, trying to retain some inheritance for the children, and give mom personal care."

 You are right- you married your husband and share kids with him. It must be awful for the kids to be in that negative situation , not even having  school as a break during the day (and I support home schooling as a choice). That emotional stress will be more of a lasting inheritance than whatever money is left by your mom.

 The prior posters are wise, see a lawyer about getting medicaid planning done. With Mom placed in memory care you can still visit her and make her life better, and then take care of you, your husband and your own children. Good luck.

 


Mom4All
Posted: Wednesday, June 3, 2020 6:17 PM
Joined: 5/3/2020
Posts: 7


Thank you for your insight and truthful views on this reality.  I am afraid that my greed and desire to do-it-all had gotten the best of me.  MC does seem to be the best option.  We will visit and interview at the facility this Friday.
jfkoc
Posted: Wednesday, June 3, 2020 6:35 PM
Joined: 12/4/2011
Posts: 18487


If it does not work out, really not work out, you can bring your mother back home.
dayn2nite2
Posted: Wednesday, June 3, 2020 9:30 PM
Joined: 6/20/2016
Posts: 2306


If your husband has this level of intolerance to her, you need to place her very soon because if you don't you could end up being a single mother.  Over the years, I've read posts from multiple people who lost their marriages because they moved a parent in when their spouse was intolerant.

Your husband's level is something I've never seen before.  Has something occurred to cause this or does your husband have an issue like autism that causes this intolerance of her?
Cynbar
Posted: Thursday, June 4, 2020 6:04 PM
Joined: 2/29/2020
Posts: 75


I agree with all the above advice -- it's time for memory care for your mother, and her money should be used for her. An inheritance is never guaranteed. This current situation isn't good for you, your mother, or the kids. But I must say, I am taken aback by your husband's behavior. We don't know the backstory, and if there is any valid reason why he dislikes your mother so much and is so controlling. It sounds like he is not able to conduct himself in a manner that is kind to an ill person, or considerate of his wife and her feelings. If so, this is an alarming omen for you and your kids. When things settle down, please evaluate your situation and, if necessary, look for some professional help from a therapist perhaps to decide how to deal with this. I know this wasn't related to your original question, but I can't help but be alarmed for your family after reading your letter.
Mom4All
Posted: Wednesday, June 10, 2020 12:14 PM
Joined: 5/3/2020
Posts: 7


I agree that the position of my husband is quite strange, especially from where I sit as a caretaker type with unconditional love for every member of 'my' family. He is related by marriage, and doesn't even feel that he could take care of one of his own parents. Yes, he is controlling of his environment out of both self-preservation and a desire to shield his kids from Mom's beliefs, and although it is odd to me that he can't find a common ground to stand on, I do my best to respect his views while maintaining my own.

Thank you all for your comments. After visiting and undergoing a health assessment at the AL/MC retirement home, my big questions are now about which living situation would be the right choice within the facility, and when there are not eldercare attorneys in my area, if another type of attorney could also help with medicaid planning.  This caregiver's role certainly is an educational and emotional journey.


Jane Smith
Posted: Wednesday, June 10, 2020 4:27 PM
Joined: 3/23/2015
Posts: 105


If there are no elder care attorneys in your area, but there are in your state/province, you might be able to get one to do a phone call or virtual appointment, or refer you to someone closer. 

Otherwise I would look for an attorney who does wills, trusts, and estate law in your state/province. 

Word of mouth is one way to find someone but there are professional organizations that may be able to make recommendations. The American Bar Association, the Bar Association for your state/province, even a local Senior Services agency or office. 


MN Chickadee
Posted: Thursday, June 11, 2020 9:45 AM
Joined: 9/7/2014
Posts: 1034


Certified elder law attorneys can be hard to find (there is exactly one in my state.) There are many attorneys who practice elder law, perhaps their practice is mostly or exclusively elder law, but are not certified by that board. I would look for one who does most of their practice in estate planning and has experience with Medicaid. Word of mouth recommendations are often good.

As to which setting to place mom in, I would place based on her worst days. It also depends on what safeguards they offer in the AL section.  Is she safe in the kitchen? Bathing? Can she self start activities, use the TV remote herself etc? Keep up in the group activities that may be geared for people without impairment? Might she wander when in an unfamiliar place? We often over estimate what our LOs are capable of and place at the wrong level of care. If she goes to the AL are there any add on services available or would it require an immediate move if she isn't safe? Would there be a waitlist to move? 


jfkoc
Posted: Thursday, June 11, 2020 11:17 AM
Joined: 12/4/2011
Posts: 18487


I would contact Legal Aid in your area or ask your senior center if there area any "senior" lawyers. Ask your friends too and often you can get good suggestions from people in a support group.
Unforgiven
Posted: Thursday, June 11, 2020 11:54 AM
Joined: 1/28/2013
Posts: 2647


Whoa.  You mentioned your husband wanting to shield his and your kids from her beliefs.  That can have so many meanings.  Are these the delusions of dementia, or does this go deeper?  There are some situations where it is the mature thing to remove onesself from interactions rather than have to hide one's upset at what is being said.  My own spouse limited interaction with my mother to a minimum merely to retain sanity.  I didn't judge.  But at least we had our own bedroom where we could be alone.