My MIL has been diagnosed with dementia, and my husband's family seems very set on he and I moving back from out of state to help take care of her. It isn't that we don't want to help, it's just such a huge decision. We are all scared and don't know what to expect. Is there a way we can help from out of state, or is the need great enough for us to HAVE to move back?
My MIL has a daughter, a husband, siblings, nieces, and their families that all live within 20 minutes of her. I know they are scared, but it is offensive to us when they suggest we are trying to "get out" of taking care of her. None of them have ever moved out of state and started over, and we have twice! We are in our late 20's, finally have jobs we love, but we don't make very much money and still have some debt from our last out of state move from 2 years ago. I have family where we live, and we love it here. My husband has severe social anxiety that makes it hard for him to keep/like a job, so the fact that he enjoys and performs well at his job is crucial. The pressure and harsh words from his family don't help with that either. And, lastly, they want us to start over in a place that has a horrible unemployment rate in crime-ridden, middle-of-nowhere California. Once his mother passes we will just want to leave and have to start over somewhere else. Are we being unreasonable? Is the need great enough to warrant us moving away from everything we created? I don't want to loose our relationship with his family, but they aren't willing to see things from our perspective. Any advice?
I'm so sorry that you and your husband are facing this. First things first: you aren't being unreasonable.
Secondly, you need to be able to make an informed decision, no matter what you decide to do. Read the messages here, ask questions, call your local Alzheimer's Society and ask for information.
What type of dementia does your MIL have? How old is she? I know it's hard, but try not to panic. Usually this disease is a long haul, not a short sprint. Take your time and think things through.
Your husband's family probably can't see things from your perspective because they're freaking out and have no perspective right now. They're not thinking clearly. I'm trying to give them the benefit of the doubt here, but I will say that I find it incredibly unreasonable for them to expect you two to move when they are all already there. And emotional blackmail is never a pretty thing.
Dana, I do think it is unreasonable for his family to expect you to uproot your life and move back when there are others there that can care for her. I am sure everybody is trying to deal with this diagnosis but that doesn't mean that you have to rush back permanently.
A few questions.... Can I assume that she is living with her husband who is in relatively good health? Is your FIL capable of caring for her? Do the others work? How sever is her dementia? Does she need somebody with her 24/7? Is she hostile or easy to live with? Does she wander? What do they expect from you and your husband when you move back there? How far are you from his family? What is the financial situation and is outside care financially possible?
There are many options for caring for MIL that do not involve you moving back home. She can stay at home with her husband if he is willing. Those that are local can give him assistance. If they are unable or unwilling there are agencies that will come in for a few hours or full time. There are also adult day care centers your MIL can attend during the day to give FIL a break. If MIL is unmanageable at home then there are care facilities. Much will depend on the severity of the dementia, her temperament, and how effective those around her are at caring for her.
From what you described so far, I would not be packing and moving back. There are other ways to deal with this situation without you uprooting. You can use your vacation to go home and care of her for a week or long weekends to give the others a break. Perhaps Mom and Dad can move to where you are
My Mom and Dad lived in one corner of the state. Dad was diagnosed first with Vascular Dementia and Mom cared for him at home for several years. Then she was diagnosed with Alzheimer's and they stayed at home for a year with an in home care giver. When they needed more care, I have two sisters that live in another city, Mom and Dad moved there, to an assisted living facility, and my two younger sisters cared for them for a year and a half. As their diseases progressed I moved Mom and Dad here to a care facility. We lost Dad March 2010 after a year here and Mom is still in the care facility. Each of us were established in different locations. None of us uprooted our lives but Mom and Dad have been well cared for.
So before you pack.... know there are other options
Don't feel that you guys have to move back to the state where his Mom is...
For now, your MIL does have lots of support. They just assume the family tone that everyone has to be together, but this does not mean you can help by moving back. It depends on how close your husband is to his Mom and etc. If your MIL has a husband and family around, you don't need another one.
Surely there will always be one more to count on for help, but at this point, it is not urgent for sure. The family is panicked by the diagnosis. But your moving back is not the plan now. For now the family needs to plan for her future - like who will care for her, what kind of plan she has, can she afford to go to a assisted living/memory unit/NH later on. Can they hire home care caregiver for her and etc.
Also your husband is a guy. Usually female caregivers help more. If your husband is not the type that can care for her like a nurse, the job would be on you, the DIL. So it is not so simple.
Surely the family will always count on you. My own original family sometimes told me to "move back" for more people in the family. But my parents have many relatives over there and one more does not matter. It is my husband's root here so we cannot move. Like you said, you don't just move randomly and uproot your jobs and everything.
One thing that is different here is that you guys are still very young. Maybe that is why the family thinks you can hurry up and move back and start all over...
Anyway, I don't believe your move will help anything if no one is planning for your MIL to prepare for the future in her own home.
On the other hand, if your husband will miss her a lot when she gets sicker, then he may want to consider to be closer. It is his call really but also he needs to consider your need too.
We moved my FIL who has stage 6/7 Alzheimer's to a NH last year to be closer to us. My husband is the only one his Dad got.
Thank you all SO MUCH for your answers. It is helpful to hear from people who are already experiencing this, as obviously none of us knows what to expect yet.
To answer some of the questions, my MIL is only 46, she lives with her husband who is capable of taking care of her. The doctors haven't determined exactly what kind of dementia she has, they are having trouble with that apparently, although they say it isn't Alzheimer. She has had symptoms for just over a year. She isn't violent, she knows who everyone is, and she can take care of herself for now. She repeats herself A LOT, and my husband who recently visited her said she talks like she has mild retardation. When I talk to her on the phone she says the same things over and over again, and his family has said it is very hard for them to be around her for long because she gets annoying.
Most of the pressure comes from my sis-in-law. She has basically said we either move back or get out of her life completely. It is hard to speak with her because she is so harsh with her words and has already determined that we are "shirking our responsibilities" and leaving her to "deal with everything alone." I understand she wants her brother's help, I understand it isn't easy being the child who has to see her mother like this, and I understand that we probably don't "get it" because we aren't there, like she says. I just don't understand what she expects us to do aside from suffer alongside everyone.
There will be more family talks as the doctor visits continue and we do need to make a plan of action together. I think this afternoon I will spend some time calling his family members individually so we are all on the same page. Although sometimes it is hard to talk, communication is key. I am happy to be a part of this board, it has already helped so much. Thank you ALL again! Truly!
You know, a job is hard to come by. That is why my husband is here in another country. These days no jobs come easy. So the SIL is not being fair to her brother. Does she want him to get welfare in CA? A job is the priority.
Your husband can travel to see her, you guys can help her finances on line and etc. Now since her husband is still around, no need for your SIL to panic.
In a way it may be true that if the husband cannot handle it, the daughter may have to step in. But your MIL is not counting on her daughter, is she? Why is the SIL so nervous about it? Is it about family gathering? If it is about gathering, then it is about the family love, not about who needs to come over to help. You guys really need to sit down to have a plan about caregiving. Say, if your MIL's husband dies, who will be the next POA and etc.? Maybe that is what the SIL is upset about - she does not want everything falling on her. Also you can move your MIL to your place in the future. It is not a dead-end stuff. (When she forgets much more then she can leave her own home.)
About how long she will live, since you mention about "after she dies", you need to know that since no specific DX, it may take at least 5 to 10 years or even 15-20 years for her to keep going like this. Now she is in early moderate stage because the repeating is obvious now. It seems she is quite young. Could it be early onset Alzheimer's? Did she have brain injury? Did she have surgery that caused this? (e.g., too much anesthesia.)
You really cannot count on how long she will have and plan on that - this is unknown. My FIL who is to be 91 has lived for 6 years since his diagnosis of AD. So it is a long shot.
Again, sit down and talk to home care co. or any nurse who understands her type of dementia and plan on it. Her husband may need extra help by hiring part-time caregivers or CNA (certified nurse aid.)
I don't think your SIL is making any sense unless your husband does not get along with her... If she really thinks you need to help, the worst case is you could move your MIL once her husband cannot handle it.
Last edited by ninamarc; 10-26-2011 at 02:08 PM.
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I think this afternoon I will spend some time calling his family members individually so we are all on the same page. Although sometimes it is hard to talk, communication is key.
You are one smart lady!
With regards to your MIL--gosh, I don't even know where to begin. Lots of things can cause what is generally known as "dementia"--everything from a vitamin deficiency to a brain tumor. Herbal supplements, too. Hopefully the doctors will get to a more definitive diagnosis soon. You might want to go here:
and scroll down to the list of possible tests to be done--your family might find that helpful during doctor visits.
Ahh, your poor sister-in-law. I say that because I'm guessing that she has more baggage than a 747! It sounds like she's overreacting all over the place and her mother's illness is only the tip of the iceberg. The proverbial straw breaking the camel's back.
I feel a lot of compassion for her, but that doesn't mean that I think you should cave to her ultimatums. It sounds like you've just been innocently living your life while her resentment and jealousy grew, and now this happens and it's all too much, so she explodes and blindsides you and her brother. Am I even close?
Hang in there!
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SIL is panicking because she is clueless as to what to do. Mom is annoying? Now that's a good reason for you to uproot your lives, quit your jobs, and go running to her aid. I do believe she reminds me of my sister.... Drama drama drama.
I do wonder why the doctor said it was NOT Alzheimer's. It is not unheard of for someone that young to have Early Onset Alzheimer's. Yes, there are many other things it could be but there is no way they can throw out that diagnosis.
When Mom and Dad moved to AL I was constantly bombarded with the fact that I was not doing enough and what I did was not right. I was constantly on the road between here and Mom (6 hour round trip). That is why I moved Mom and Dad here when they had to move to a locked unit. Since April of 2008... I have been responsible for their care and their finances. Yes they are in a facility but there is still much to do. And I have survived with my sanity so far... I think It's all about your mind set and understanding what you are dealing with. Yes, there does need to be communication but please do not let her bully you. Be just as strong as she is. Your FIL is going to have the majority of the responsibility so perhaps he is the one you need to talk to!!
Glad you are here
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I am fairly new here but wow, you have a lot going on. I agree with what people have said about your sister-in-law. She is panicked and probably too new to it all to see the big picture. Not everyone is equipped emotionally to deal with a dementia parent. I have 5 siblings, and I am the one in the same town as my dad, with the others scattered around the country. I sometimes get overwhelmed but I cannot change how my brothers and sisters are. In fact, they are great, but they do not all have the same skills, and the day I accepted that they are all doing their best and stopped keeping score, the more peace I have felt.
Clearly you cannot and should not move right now. The thing now is how to deal with your husbands difficult sister in a way that lets her move through the process with a relationship still intact. I have one sister I "use" for venting. It helps. Maybe she needs to process her fears by calling the mom "annoying". If the sister is kind of a bossy bully, which it sounds like she is, then you and your husband need to create clear boundaries.
You guys are young. There is plenty of support you can provide from afar. It may be years before an extra in-state set of hands is really necessary. I hope you keep us posted.
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..........."I sometimes get overwhelmed but I cannot change how my brothers and sisters are. In fact, they are great, but they do not all have the same skills, and the day I accepted that they are all doing their best and stopped keeping score, the more peace I have felt."........
Bingo!! Well said and so very true. That is exactly what I have discovered through this process. It is not what others do, but how I process it and think about it that makes all the difference. They are who they are and I just have to do what is right for me and not worry about them
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Don't let the family pressure you into making a permanent decision based on a short-term problem.
It's not uncommon for some types of dementia to strike someone so young. My wife was diagnosed with Pick's Dementia ( a form of Frontotemporal Lobe Dementia) at the age of 52,and she died only a year and a half later.
The symptoms your MIL seems to have are almost exactly what I experienced.
If your SIL is insisting that she'll get out of your life if you don't do exactly what she wants... do you REALLY WANT someone in your life who acts like that?
You and your husband quitting your life as it is to rush home to make someone else happy is not the answer.
There are other solutions out there. You just have to find them. My wife's family came down a few times from Michigan to give me a break, and that was much appreciated. I never expected them to put their lives on hold to come take over what was my responsibility. MIL does have a husband, right?
Do what you can to help and be supportive, but don't let guilt drive you to a really bad decision. K