Hi, I am totally new to message boards. I have been looking for some people to talk to about what I go through taking care of a Mother in Law with Frontal Lobe Demenita. She has been living with us for over a year now, and it just seems to get harder every day. I have 2 children a 9yr old girl and a 7 yr old boy, the way that they explain Nana is that she gets confused. I understand that there are going to be more times that she is snippy with me because of being her primary care taker and with her 24/7, but sometimes I want to find a hole and climb in and just cry. With my husband we have gone through denial, to just not wanting to deal with it. Which doesn't make it any easier for me. She has a house in New York that has to get sold, and he still hasn't taken any legal responsiblity of her at this time. I think the longer he puts it off, we might be waiting too long before she doesn't understand what needs to be done. It is overwhelming at times, because not only do I take care of her but I also work daily.
I joined in Nov. when I first began to realize that both of my parents had dementia.
I'll pass along a few of the things everyone here shared with me.
First, it is progressive and will continue to get harder on you.
Second, you need to take care of yourself and not let things get to the point where you have no mental, emotional or physical reserves left. This means getting outside help - paid or family, and possibly assisted living.
Third, you can't afford to be in denial or let your husband put his head in the sand. You need to get the house sold if that's what you plan to do. It will help pay for help for your MIL. You need durable power of attorney with medical care representation and HIPPA. You need your name on bank accounts, etc.
Others on this board have more experience and knowledge to pass on to you. Every thing I now know about dementia and caregiving I learned from them, and they are absolutely wonderful.
One of the lifesaving things I learned here was to try to look at the situation through my parents eyes. She has many more reasons to be snippy at you than the fact that you are her primary caregiver. Her whole life must be confusing to her right now, she's probably feeling some fear and anxiety and even depression. I had to learn not to take it personally or to react in the way I could have and even should have if my parents had full use of their minds.
Good luck to you, and keep looking here for the many responses you'll be receiving...and like they told me, glad you're here and sorry that you need to be here.
My wife died last march at 53 with Frontal Lobe Demenita, so I completely understand where you are. She was diagnosed in September of '07. Was admitted to a nursing home a year later, and died March 29 of '09.
Tell your husband he has very limited time to play the denial game. And you CANNOT take all the responsibility. Working? Small children? 24/7 Caregiving. NO, NO, NO. you need help now, and he just has to get over it!!!
It's his responsibility to take charge and deal with it. He HAS to get Durable Power of Attorney. The house needs to be sold or whatever, because he's going to need the money for nursing care soon. there's a 5-year lookback from Medicaid on assets, and when she goes into a nursing facility, you'll have to spend all of her assets down to almost nothing before they are going to start paying.
You and your husband need to meet with an Elder Attorney NOW to figure out what needs to be done. Chances are you don't have a lot of time in which to do this. So he needs to get over it, and get things taken care of.
Make him read these posts, so he'll understand the urgency of the situation.
Thank you all so much for making me feel welcome. I have tears in my eyes reading your responses.
JoJo, the hard part for me is getting the assistance to be able to make time for myself. I am working on that and trying to get my husband to understand that I sometimes need to just get out by myself.
I appreciate everything, I will try to get him on to read these post. My MIL is 62 and was 61 when she moved in with us and was diagnosed. We are working on getting the house sold, and then he states that he will take power of attorney steps becuase he doesn't want us to have the financial burden of trying to get it sold or having to pay taxes.
I think I just need a good cry and have been working so hard to just hold it all in and together that I feel like I am going to burst.
I just want your husband to know the urgency of the situation. Yes, your MIL is still young, but FTD doesn't care. And waiting to do anything is a huge mistake. If I'd not taken immediate action to get things rolling, I would have been in a world of hurt.
It's not fun, It's not easy. But you just have to jump in with both feet and get things taken care of. I recommend starting now to make a running list in a notebook of everything that needs to be done. Write down all names and phone numbers in the notebook. You will be needing the info again. There's a lot to be done, and not a lot of time to do it.
I know you are just feeling overwhelmed. But you just have to take charge of the situation before it takes charge of you. Find a local support group if you can.
You and your husband are going to HAVE to work together, or you are going to burn out really soon, and he'll have to deal with it all by himself. I had it all to do, and it almost killed me.
I just cannot say it enough - Time is not on your side in dealing with this.
I can't add much more than what you have already heard other than to say listen to them. They know. We all know, now.
We are all in different stages with our loved ones.
2 1/2 years ago, my step dad died and we took over mom's care. My mom, by the way, had not been talking to me for the 2 previous years because she thought I was stealing her family pictures.
SHe had my poor step dad change the locks to keep me out. It broke his heart but he was afraid of her. She also forced him to take me out of the will.
Oh it was a fun time...not! But, in the years since we have taken over her care, we have done all the things needed. We had no choice. None of it was easy but looking back there is great relief that we did it all.
We moved her from her house to an independent living facility..we took away her driving privileges and just recently had to move her to an assisted living facility...which by the way has worked out so much better for her. And me!
She is now much happier, much calmer and, for as long as it lasts, we are ever so greatful!
Step by step you will get through this.
And Ken...how about that JoJo...she's come a long way!
And you will too, Annyebug.
Welcome to our little corner of the world. We're here day and night.
Just because you have POA does not mean you have to pay the taxes for any of her income. She still stands alone for all that. It simply means that you can, if need be, sign for her and make decisions for her. But that's it. So please don;t think it's going to impact your financial situation.
Titchou is right, POA in no way means you're taking over financial responsibility. But it does allow you to take actions that are going to be needed for you MIL. I got POA a year before the dementia started showing, and my name on bank accounts, because of physical problems and hospitalizations my parents were experiencing.
And don't feel overwhelmed by our sense of urgency! It is urgent, but you are also going to need time to take it in and accept this is what will need to be done, maybe sooner than you thought or wanted.
You say you want a place to discuss what you are experiencing, and this is it. Here you can let out all that you've been holding in, and have had no one to discuss it with. I was only able to hear what they were trying to say to me because coming here had already taken a big burden off my shoulders. For the first time I felt I wasn't going to have to do this alone, and everything that was bothering me wasn't weird or unique - everyone here had been through the same thing, or very similar, and understood. So let yourself vent, and be comforted. Believe me, whatever you're facing now, and whatever you have to deal with in the future, just became a little easier. It will still be hard, but it will be doable. And along the way you will learn to trust yourself and your decisions, because you've been listened to and encouraged and given a wide variety of experience to learn from.
Anny, you have to move heaven and earth to get your MIL into a nursing home. There, THREE shifts of trained nurses will do what you do now, in between your job and family. Your husband may be in denial (in de river Nile) but the time has come to climb out. Tell him I said so!
I have experience with a friend who took in her MIL for several years of Dementia at the same time as bringing up 3 kids, 2 in elementary school and one teenager. Her kids suffered conditions which would be considered child abuse in this country. (They were somewhere else.) Her daughters were hit by the grandma who used to be kind and sweet to them. The son had food thrown at him when he brought Grandma her supper tray, which up until that day she had refused to accept from anyone else but him. He also had to witness her running around the house in only a bra, no panties, screaming and yelling obscenities. The boy wound up in mental health residential care.
I think it is impossible for you to keep a Dementia patient in your home with small children. It ought to be forbidden by child protection laws. She needs to be in a place where SHE is safe and cared for, and the helpless children near her are safe from her. You may find this harsh. But any day she can change from the loving granny to a mean angry person - and the kids will not understand why. They will think they did something wrong.
Anny, I was not trying to be harsh in my urgency. I just know how fast things can change from one day till the next. And I don't want you guys a few months from now wishing you'd taken necessary action sooner.
As always, JoJo and Martha have very wise advice and keep me in line.
You WILL make it. And some of us are almost always on here to listen. K
Echoing the others, so sorry to had to come looking for this board, but so glad you found it ... caring for my mother in law with Alzheimers and my father-in-law, this board has been invaluable to me. I also have a young child - my daughter is 9 now and she was about 4 when I really kicked into full-time caregiving for my in-laws. I did everything I could to shield her from the stress and anything that might scare her. Both of my in-laws are in an excellent nursing home now and my daughter enjoys going to see them (most of the time : ) and has only happy memories of them ... the one good thing I'll say about letting your children see you take care of family is that they develop an awesome sense of compassion and my daughter is so kind to all the residents at the NH.
You and your husband MUST get POA for your MIL as soon as possible, before she deteriorates further and things become much more complicated. Durable medical/financial POA does not make you responsible for her finances, but you MUST have it to care for her and advocate for her and handle her affairs.
I also work full time, but I only have one child ... you are probably going to need to look into nursing home care eventually, and I would suggest doing this sooner rather than later. At least visit some places and you might be surprised at the great level of care some of these places can provide. Finding her a safe, good nursing home is also taking care of her, when it's no longer possible to do so at home.
You will find so much support and information here, from all these wonderful people who have been through this or who are still going through it!
The Following User Says Thank You to shellbelle For This Useful Post: luyingjie (01-24-2012)
Thank you all for your kind words, and I have marked this site as my most favorite site at this time.
I am working daily on my husband, but feels sometimes it falls on deaf ears.
My MIL hasn't been mean to the kids except for the occassional arguments. (once my son wanted chocolate milk and she argued he should have white milk)
I have GREAT support from my parents and they willing take the kids anytime that they can, and they kids LOVE the break.
An issue lately is that she tries to be the "Mom" in the house, and tries to correct the kids or tell them things that they need to do. I am Mom and they are my kids to raise.
We can go the whole day and she won't speak to me until my husband gets home and usually then she is directing everything to him.
I usually hold it all together pretty well, but the past couple of days I have felt very emotional and searched hard to find you guys. Thank you so much and I will be talking to all of you on a regular basis.
The Following User Says Thank You to annyebug For This Useful Post: luyingjie (01-24-2012)
Please remember, your MIL is not doing these things to be spiteful to you. Her world is most likely very confused, agitated, lost. You can't reason with a dementia patient, as, I'm sure , you've already discovered.
"Reason" makes no sense to them. You can talk and yell till you turn blue, and it just kind of bounces off like radar waves. It's not going to get better.
The best thing you and husband can do is start preparing yourself for what IS to come, and what you must face and do. FTD seems to progress faster than Alz for some reason. No set time line or sequence of events. I'm looking back now, and thinking... "really, was that only a year ago?"
Time flies when you're havin' fun, right, Martha?
But first of all, take care of yourself. Care giver burn out is a huge problem. Plus small kids that really need their mom and dad. I know. My daughter was 14 when my wife was diagnosed. I know what it does to children.
You have come to the right place. And, by the way, I am known as "St. Ken", all care givers are granted sainthood. And I'm not even Catholic.... I"m a Baptist Saint.
You'll also find that a strange sense of humor REALLY helps in dealing with Dementia.
Take care. k
The Following User Says Thank You to kenbob71 For This Useful Post: luyingjie (01-24-2012)