I have two boys ages 8.5 and 4 and since my mil moved in August 1 my already chaotic household has gotten worse if that is possible. I have tried to explain to my 8.5 yo about his gram's illness but how much can an 8-yo really grasp? He has his own behavioral issues fueled by many situations but since her moving in he has become more angry, lashing out, rebellious and just downright fresh to everyone. In turn my 4 yo who is so different from his brother, ie. loving, listens well, an overall good kid is mimicking the behaviors of his brother and has become more whiney and defiant. I am at such a loss as to how to make them more comfortable and understanding of the changes in our household. I feel as if I am the worst mother, dil and wife as it seems whatever I do there is always so much frustration, fighting and overall unhappiness here it makes me so sad.

Any suggestions or advice from others that may be in this position would be greatly appreciated.

Thanks

You are NOT the worst mother, dil, or wife!!!! You're doing a great job with all that you have on your plate.

Christine, I second what jellybeans said. You are not a bad mom.

I read your other posts. You seem to understand what AD is about but you are still in denial. The denial is that it is not about you. The denial is that YOU CAN'T FIX THIS! You are dealing with a family member who is past the point of being responsible for her own care. That in itself is chaotic.

Christine, you can only do so much. Your primary caregiving responsibility is to your children. You are caught between a rock and a hard place. That's nothing to be ashamed of.

Don't beat up on yourself. You have options. Once you lift the pressure off yourself I know you will figure out what to do.

Iris L.

Christine
I believe THere is NO WAY someone with young children at home should be caring for an alz patient-- unless there's a wonderful support group in place (other family and community members helping out ALOT) and/or if the patient is someone you love deeply.

You and your husband may need to see a counselor (sometimes there's one in the behavioral neurology departments in hospitals where ALZ diagnosis is done. These social workers specialize in helping caregivers and know what you are going through).
I don't know why he expects you to do it all...but it's not realistic for your happiness and mental health. or for that of your children.

It will be easier when the aides are in place but caregiving is an ever-growing challenge.

If there's monies available, she can be placed in a memory unit in a dementia ALF. If there aren't, ask your local alz society for info on nursing home dementia units that have patients at earlier stages. I visited one NH unit that I thought was as good as the ones in ALF's.

To better understand this crazy disease: Understanding Dementia Experience

Aside from the fact that many eight-year-old boys are generally disrespectful and smart-mouthed -- it seems to be a phase -- your son has another big issue to deal with. He is no longer the #1 kid. Granny just took that position. I imagine there are times when the kids used to play freely in the house, and now are told to go to their rooms, be quiet because GMA is sleeping or GMA is fussing at them. It's not unusual for an elder to have trouble with extended time in the noise and clutter of a lively young family -- if the elder has Alzheimer's or a related dementia, even more so.

No matter how much you try to explain it to him, he can't really "get it." He's 8 years old, and many adults don't understand or deal well with the stresses of living with an ADLO. And the 4 year old is still trying to figure out adults, period, much less ones with impairments who have suddenly appeared in the household.

I say this not to make you feel like a lousy mom, but to explain you are a NORMAL mom with NORMAL kids dealing with an ABNORMAL situation.

Please take under consideration the advice you have received above and a few of my own:

• Seek counseling with your husband to help you navigate this enormous workload you have taken on.
  
• Consider placement options. If you decide not to pursue them now, fine, but you will be better prepared when/if the day comes that seems the only option.
  
• Investigate adult day care for your MIL, especially if it covers the later afternoon, post-school hours so your boys have a "just us" time in the home.
  
• Ask your local Alz. Association chapter if they have or know of a support group/program for youngsters dealing with an ADLO. I know they have these for cancer-affected families, maybe you can find one that will help your boys.
  
• You MUST get some respite for yourself. What happens if your health breaks down? Who will take care of the household then? Does hubby qualify for Family Medical Leave at his work? Even if he took an FMLA day only once a month so you could go do whatever all day long while he holds down the fort, it would be a good break for you. Not to mention he will better understand what you are dealing with.

Be easy on yourself. As much as you might like to be, you are not Superwoman. Ask for -- no, DEMAND -- help from others.

And come here and vent as often as you like. That helps, too!

I usually think, "What would I want for my children?"

When it became obvious that MIL could not live alone, some of my husband's relatives decided that MIL should live w/ us in our home, or (since her home was bigger) we should sell ours and move in w/ her.

No, on so many levels -- but

I thought "What would I want for my family?"

Would I want either of my sons to pull up roots to move back in w/ me to take care of me, uprooting their children (in high school) in the process? Would I want one of my sons' families to have to stand on their heads for me? (No, kids, you can't have friends over, grandma needs quiet so she won't get agitated, etc.)

I would want my sons to have good marriages and relationships with their children, meeting their children's needs as their #1 priority. If I was ill in any way so as to disrupt that which I want for my kids, then I would want them to lovingly find another living site for me AND VISIT ME OFTEN WITH THE GRANDKIDS :-)

Jellybeans, thanks for the boost! God knows I seem to need them on a minute to minute basis lately.

Christine, you can only do so much. Your primary caregiving responsibility is to your children. You are caught between a rock and a hard place. That's nothing to be ashamed of.

Don't beat up on yourself. You have options. Once you lift the pressure off yourself I know you will figure out what to do.

Iris L.[/QUOTE]

Thanks so much for the support and reassurance. I have options, I know, I am putting most of them into place and the ones that I can't I have to accept that just hard as I am a perfectionist and do have that bad habit of trying to "fix everything"! Thanks for letting me hear what I need to remember..I am my worst enemy as you have probably figured out.

Thanks and I totally agree but we both agree that we (rather me) took on a real huge responsibility before stopping to really think about how much impact it would have on our whole existence. The problem is we feel some sort of obligation to follow our offering to her and follow through on our promise. We know that sounds sort of foolish but when we originally started this project (inlaw apt) we did not know just how bad she was mentally and she offered (probably not knowing) to pay for it as financially we could not swing the amount needed to put such an addition on our home. It is not a big addition and my husband did a lot of the work to save her money but it still was quite steep. This is another reason we feel guilty if we immediately put her in a facility. So I/we feel as if we need to suck up and try to give it a go. My husband is very supportive but you know what? He does not have a clue what it is like as he does not physically do it and he is not here everyday and when he gets home kids are in bed, I am working, mil (as of a week ago)is in her space so yeah he doesn't get it that much, although he is really trying and is very supportive. I guess that is better than not but it all really stinks as (I know this sounds horrible) but I do not love her like a mother (I do try) and she is not my mother and that changes things a bit even though believe me I go above and beyond what many dil's would do or put up with with the "not so close" relationship we had. But then again, that's a whole other different story.

We both have come to the conclusion that we will get all the outside help we can and if tht is not good enough or doesn't work we will have to place her. We are going to reevaluate in three months or so.

Thanks so much for all your support and advice.

[QUOTE]Originally posted by Carolina Songbird:
Wow that pretty much sums it all up, you get it as many others here do. I am going to show my husband these posts so that he really can grasp the whole situation. Thanks so much for all your suggestions and reassurance, boy this place is wonderful for my mental well-being!!

I'm having the same problem with this 53 year old. It is unbearably painful to have my mother sitting on the couch, but she doesn't know me as anymore than a caregiver, not a daughter.

I had a horrible relationship with my late father and when those demons arise, I have no one to talk to. I'm learning what it is to be an orphan with the body of a parent still living.

She wants to move to Indiana where she knows no one. I a selfish sense, I am discouraging it because the move will consume all of my inheritance. I have savings of my own, but not enough for retirement. My grandparents intended to have the inheritance they gave my mother to be passed down to me, but H can see that is never going to happen.

I'v have come to a complete opposite relationship between my mother and I where we will completely separate our lives. I will not inherit from her if anything is left and any little bit of money left after I die will go to the Catholic church.

I'm still suffering from the fact that my father abandonded me and now my mother it doing that same. I'm not a worthless person. I have an accounting degree, a CPA and had a good career until my mother got sick, but I have nothing to go back to.

It's all so hopeless.

Christine, I believe good caregiving strikes a balance between what works for the person with dementia and what allows the primary caregiver(s) to maintain their physical, emotional and mental reserves and keep their commitments in the rest of their lives - to spouses/partners, kids, jobs, etc.

It's OK to try one thing - see if it works - and if it doesn't go to Plan B.

One thing I have learned with dementia is that the first thing you try is rarely what works long-term. For example, I tried 24/7 paid in-home for my mom so she could stay in her house. Didn't work. Moved her to a large dementia care ALF in my city. Worked better, still had issues. Moved her to a very small group home that's certified for Alz care - so far, the very best solution of all.

But it took about a year to figure it out.

Meanwhile, I spent about $27,000 more at the dementia care ALF than the group home would've cost - and the group home has turned out to be a MUCH better answer.

But I did the best I could with what I knew at the time. No second-guessing. All you can do is make the best decision in the moment - and NOT BE AFRAID to "re-make" the decision when it becomes clear that Plan A has costs you can't afford - emotional, physical or financial - and/or you know more about the situation and/or other options than you did before.

Dear Leah, have you ever visited a Christian/Catholic therapist or mental health program? Some aspects of the therapeutic experience will be much different from that of a secular therapist. You will be better able to understand your life. I know it is not the same thing, but after my divorce I participated in a Christian divorce recovery program that helped me immensely.

Iris L.

I would want my sons to have good marriages and relationships with their children, meeting their children's needs as their #1 priority. If I was ill in any way so as to disrupt that which I want for my kids, then I would want them to lovingly find another living site for me AND VISIT ME OFTEN WITH THE GRANDKIDS :-)[/QUOTE]

Totally am there with you and thanks. It is so difficult to make a decision that is beneficial for everyone!

Leah so sorry for all your pain. Maybe you need to just find some services for assistance and then proceed to find a place for your mom. Our lives become consumed when caring for our LO's but we all, as I am learning here, that we too have a life and we can benefit ourselves and our LO's by giving them the best care at a facility that is specialized for their needs.

Try not to give up and try to keep your spirits up as much as you can. We are all here for you and each other!

Grassflower, thanks for sharing. I am trying to accept that our original plan may not be the best option for anyone involved but I think we will give it the three or so months and pursue living facilities. She has been more confused than usual, probably due to the new environment but there is something new to be confused about every day.

Thanks again and your suggestions are always so enlightening. This is such a long haul of distress isn't it? I'm sure once the rough spots are ironed out we will all feel much better.

Christine, you asked about resources for your sons:

Maria Shriver wrote a book about her father for her own children, "What's Happening to Grandpa?" Many libraries have it; it can be purchased from Amazon.com and from the alz.org siet.

The main website alz.org has a section Just for Kids and Teens: http://www.alz.org/living_with...r_kids_and_teens.asp

HBO's The Alzheimer's Project has a segment on children: http://www.alz.org/news_and_events_16202.asp
Scroll down to watch the video on "Grandpa, Do You Know Who I Am? With Maria Shriver". You and your husband can preview it before showing it to the boys.

Iris L.

Glad you are asking your questions. Isn't this site great. I have ordered that book for my grandchildren, Iris and am hoping it will help them to understand their "Mimi" better. Christine will let you know because have just sent to them.
Check back later and let us know how it is going.
Sheryl

Hi Christine

I was in a similar situation a couple of years ago -- although my kids were younger. My mom was diagnosed 2 1/2 years ago -- shortly after my daughter was born. I also had a 2 year old in the house (my son - now almost 5). I really wanted her to move in with us so after much discussion and planning, we moved her in. Boy, was that tough. I really underestimated how hard it was going to be to balance both mom, a 2-year old and a newborn. EVERYBODY was stressed and miserable. Particularly my mom and my son. I am really feeling for you. Nothing has been harder for me. My mom is no longer living with us. She is right up the road in the memory unit of an ALF. We visit her about 3 -4 times a week. My heart goes out to you. Please check in here often -- there is a lot of good advice and support.

Lori K

Iris, thanks so much I will definitely look at it and get it and show to my boys at least the 8-yo he has so many questions and is really dealing with this pretty poorly.

I'm sure this will be a great help

Thanks Lori. How long was your mom with you? You had more guts than I would have, especially with a newborn. I thought being my boys were a little older it wouldn't be so bad, but boy was I wrong. I am seeing her get worse by the day, not really sure how long this is going to work.

Thanks for your note it makes me feel like I'm not feeling this way because she is not my mother. I am so glad things are a little more stress reduced. Good for you in knowing your limits, that is one of my main problems. We are not here to prove the impossible or at leasta unreasonable situations.

Take care

I just watched that short film "My name is Lisa", OMG that was heartbreaking.

Christine

She was with me about 3 1/2 months. The straw that broke the camel's back was when she fell and I was home alone with the baby and couldn't get her up off the floor (she was unhurt but we took her for x-rays anyway). I realized I needed help. I also realized that SHE wasn't happy. My mom is a private person there were some things she didn't want me to know about -- like having bathroom accidents and such. (I still know but she doesn't know that ) Add to that the fact that my 2 year old son was miserable because she was like another kid in the house and the grandma who used to adore him would pick on him and literally fight with him. Anyway, the ALF was the answer for us. It was a really difficult decision, don't get me wrong, but we are all less stressed.

This message board really did help get me through that time. I hope you are able to come here often. Although, I know with 2 kids it's hard. I don't get on here as often as I'd like anymore.

Take care and TAKE CARE OF YOURSELF!!!!!! You're taking care of everybody else right now. Try to think about yourself a little.

Lori K

Thanks Lori, hope you are taking care of you too. It is so funny that you say she picked on your 2-yo, I find my MIL teasing, and actually bit him twice (she said she was playing), my 4-yo. She really is getting on my nerves. My kid's behavior has been so difficult to control, along with not being able to control my mil's "symptoms", this house is chaos!!

She has bathroom issues/accidents all the time and never, ever cleans the bathroom and always gives me messed underwear to clean. Sometimes she doesn't even know she has #2 all over the back of her pants. Not too sure how she is actually going to the b.r. when she goes as it is always all over the top, sides and underneath the seat, it is pretty disgusting and when she was here in my house I had to immediately go into the bathroom after her to make sure I cleaned up as I did not want my kids to have to deal with that mess. I feel so bad because she was always so clean and particular but now it's like she doesn't even see it. I have brought it to her attention thinking maybe it was just an oversight, not seeing well enough, sometimes she cleans or tries to clean up the mess but is usually unsuccessful. My husband went in her apt last night to do a quick clean up and said the b.r. was disgusting not to mention the rest of the apt. When I mentioned to her he was in there cleaning she said, "why?" and I said it needs to get cleaned, she said, "it does?" I asked her if she was going to clean it and she gave me a nasty look and didn't respond. She asked about two or three more times after that and still didn't remember he was in there when she walked in to go into her space. It is so difficult not to get frustrated or lose patience when you repeat everything over and over and they look at you as if you are saying if for the first time. My mom said it perfectly, "you (me) do not understand her world and she does not understand yours". So sad but true.

Thanks and hope all things in your life are improving, hopefully mine will too.

Hi--- my mother lives in a house beside us. I have a 1 year old, a 3 year old and a 4 year old. The Alzheimer Society in our local chapter loaned me/us a GREAT book called, "Mile High Apple Pie" link is here: http://www.alzheimerbc.org/We-...-High-Apple-Pie.aspx

It helps with the positive and negative feelings related to some of the problems. I think your 4 year old and maybe 8 year old could relate to it, too.

When I was pregnant with our third, I spent about 4 months (towards end of pregnancy), helping my mom with all transport/medical appointments/errands and some food, on top of income tax document collecting, communicating with homecare, etc, etc... It was a huge challenge that I could not keep up and stay sane. I was snappy with the kids and I found that in my case, I could not be the 'best' at all the roles at the same time. So if it feels overwhelming, know that you are not alone.

I am doing MUCH better now that family is pitching in more with her transport, her homecare is stable and my kids and I have time to just be a mom with her kids. In our case, it is better for my mom, too. I am able to be more patient with her when I have more control over the frequency and duration of overlapping my roles as a mom and a daughter at the same moment in time.

I respect that you want to honour your committment to her for 3 months. You have gone to a lot of work in building the IL suite and she has contributed financially. You have an action plan for providing in home care for her to ease some of the stress.

I hope that in spite of the agreement you have for a 3 month trial, you have some limits placed on what your family will have to endure.... I wish I had! I would have made a switch sooner and avoided some anxiety that my 4 year old developed as a result of my stress levels related to caring for a mom with AD on an intense personal level while raising very young children....If you felt responsible for the addition to your home, you could pay it back and take in a renter to offset the cost to recoup the money. Just mentioning that such a transaction is an option if you are feeling responsible for a sum of money that mil invested in the home addition. Could help with how the rest of the extended family may react too, if they see you are repaying what mil invested....... or maybe you could take in a renter and the funds go towards repaying MIL and after that, they are an income for you and your family OR extra space in your home....

Hello again Christine, I know you are very busy and probably don't get a chance to read all of the posts but saw this one from a mother with children in your age category and I thought you might be interested in the responses given to her. Here is the link: http://alzheimers.infopop.cc/e...14102241/m/886107912

Iris L.

Sunshine, thanks for your information. I do feel better knowing my family is not the only ones with small kids that have to go through this ordeal. I will definitely check out the book.

Glad for you and how things worked out, the best they could anyhow in this situation. It is a good thing that you were able to find what help you could and get some help.

Thanks so much for sharing, makes me feel like I'm not alone.

Iris thanks again for all your wonderful suggestions and help with making this easier for me. Peace to you and your family.

A while back my then 5 or 6 year old heard me talking to my husband about one of his dad's dementia behaviors as being one of those that is seen towards the end of the disease.

"Yay!", she said.

I asked her what she meant, and she said, "Well, when Grandpa is at the end of his dementia disease, he'll be all better again!".

Needless to say we have had lots of good conversations since about death, dying, our faith, and why we are taking care of him at home (going on 4 years). I like to feel it is an investment in my future -- my other daughter said once that WHEN I get dementia she will take care of me at home, too...

Hi Christine

this I know for sure..children are Little sponges..they take it all in. everything going on...around them..

a small suggestion for you my friend..catch..your child doing..something..good..and praise him...and continue this practice...

you may just find..that finding the positive..good things..will help his self control..

children get our attention..one way or another..and acting out..gets our attention. immediately...every time..may you spend some one on one time with this child..

and yes Maria Shriver..I have much respect for her..her book ..what's happening to grandpa..is so good..

christine..it takes much energy to raise children..and to also care for your MIL..you are an angel among us..

patience is the answer..with yourself..and your beautiful children..

if I could give you one gift..it would be..flowers for you kitchen table..look at them..relax..enjoy them..create your own joy..every day..

may you find ways to bring joy and calmness to your home and Life...not always easy..but possible..we all have our moments my friend..take care of you first.

and consider sharing..with the Love of your Life..your thoughts and feelings..

so he can be part of the solution..to help you..in this chapter..of your Life

oh how I misss my children when they were young and would hear them say "Mommy"..cherish this part of your Life my friend..and find ways..to not feel sad..anymore..make good choices for the good of all.. I have faith you can do this..

and writing your feelings down as you have done here..is a great way..to be proactive..the answers are within you..Love Rosie

Well thank you for that uplifting message, "just exhibit love", you sound so positive and in control. People like you make this all tolerable.

Things seem to be a little better now that mother-in-law is in her own space. The kids are a little more in control and that is such a relief. I am planning to get a few books suggested by a few of the bloggers and hopefully this will help to further define the state that my mother-in-law is in for them.

Thanks again for all your positive thoughts.

You're welcome! One of the crunch times for me that was very difficult was transport/errands. It was hard to keep the kids safe & happy while accommodating mom's needs for time/patience/repetition (due to hearing) and physical support. It is very, very difficult with all of her needs. The kids learned to push the wheelchair buttons, so that was great, but we limit the amount of time I transport both. The van was chaotic with the kids and mom. Could the support person be the one who takes mom on outings as well? Do you have enough time to add that kind of support in? It might be helpful if you and the kids have time/s when it is 'just' you as a family..... or if the 8 year old is in school, could the 4 year old be in nursery part of the time so that you could either have alone time, or have THAT be the time that you DON'T have a caregiver for MIL. Just ideas.

You are not alone. There are more of us, unfortunately. Another book worth borrowing from the Alzheimer Society is "Family on Beartown Road". It's about a single mom with an infant caring for her father for a period of 8 months on her own. It's a true story told lovingly, honestly with positive energy around it. I couldn't put it down. That one's for YOU! It helped me feel understood and less alone as a parent of young children as a caregiver for an elderly parent. The author calls our situation "extreme parenting". I find that phrase so true!!!

quote:

I feel as if I am the worst mother, dil and wife as it seems whatever I do there is always so much frustration, fighting and overall unhappiness here it makes me so sad.

YOu can't be the worst because I am the worst! I have to be the best at something, even if it is being the worst!

My kids love their Grammie - they are very upset that we are considering having her live somewhere else... now I have that guilt to add on to the guilt of "kicking her out" as she puts it.

Whoever said having your kids late in life ( I was 39 and 41 when I had my boys) makes you more patient was full of crap! When you are dealing with this disease you just feel more sandwiched then the rest....

Can you tell I am not having a good day? yesterday was my aniversary, tomorrow is my birthday - yipee....

Sorry, I know I am not helping but I am feeling really sorry for myself

Whoever said having your kids late in life ( I was 39 and 41 when I had my boys) makes you more patient was full of crap! ....

No way, I had my two at 35 and 40!!! And I say that all the TIME!!! I also say that I am just too freakin old to have kids this young!

I am so sorry you are having such a bad day. Happy anniversary and try and have a great birthday tomorrow! You should celebrate you as if there was no you where would your LO be? Right where she NEEDS to go anyway. It is not that you are throwing her out and don't let that stay in your head, she is putting up her defenses because she is afraid. She will be so much better off and everyone here knows that and somewhere behind all that guilt (that we all feel just being a mother, let alone this job too) you know it too. And you know what? Your kids will be so much better too and your patience (whatever they call it at our age/LOL) will come back to whatever our baseline was, right? That is what I am being told and since she (my MIL) has been in the inlaw (as she is not bad enough yet to go to a facility) it has been a partial relief.

Do you also have to do all the errands (their favorite being the market), doc appts, bank, etc with your kids? My kids are getting so frustrated and she doesn't even get it and has no idea why they are being so fresh to her. I still try to correct them and tell them to keep their respect but you know what? Those poor things have been going through all this too and not even understanding half of what we don't understand. Believe me if she is ready she needs to go. As I have been told by my husband (it is his mother), everyone else here on the forum, OUR family is priority and they should come first. It's hard when they (the LOs) are here because you can't just let them figure their issues out on their own but if the guilt is making you feel bad just remember that and that you would not be sending her anywhere if she didn't need to go and be taken care of constantly and efficiently. I have a hard enough time taking care of my two little hellions efficiently let alone handle her too. I also say I only wanted two kids and now I have four (2 boys, husband and now mother-in-law)!

I hope my babbling helped raise your spirits a little. This all sucks big time but I do find coming here and sharing helps me restart the next day with a clean slate.

Take care of YOU, then those kids and hubby, all else will be taken care of too but only in that order.

Have a wonderful birthday and celebrate as a special day because you were born on it.

Christine - Thanks so much for cheering me up. I did have a nice birthday dinner with my husband while the kids went to Parent's Night Out at the daycare. Today was a much better day. She even asked a few questions about the ALF - I think she is trying to get a handle on it because it is really going to happen. I am even feeling OK about the decision today. think it is going to be a roller coaster until she gets settled in.

Thanks again for your kind words.

Ruth