New here with ? - Alzheimer's Disease & Dementia Message Board

buliem · 08-22-2005, 05:14 PM

Hello All,

I'm new here but I'm a regular member of the Epilepsy board. My 10 year old son has E. We are a neurological mess around here. Anyway, my MIL was diagnosed about a year ago with dementia/alzheimer's.

I know that forgetfullness is common but her's is really extreme and I'm wondering if the diagnosis of mild cognitive impairment was correct? The woman asks the same questions over and over. Sometimes within 2 minutes of having just asked. We will take her somewhere and she won't remember it the next day. She also gets pretty disagreeable in the afternoon. She'll say the meanest things. She mixes up her pills so I'm not sure if she's taking them correctly. We fill up the monthly container but I think weekly would be better. Of course we can't do this when we are out of town. She takes aricept, effexor for depression, thyroid and high blood pressure meds. Sometimes she seems almost completely normal. She still has a great memory for the past but can't seem to remember what the day or date is. She can't handle the easiest tasks and gets confused quite easily. Last night we took her to the grocery store and we had to stop her from getting a third bag of tomatoes when she only needed one. She kept forgetting she had already bagged some. Another time she served my son some fruit and then cut up more because she forgot that she already gave him some. She tried to cover it up by saying she thought he's like more but we knew what happened. Does this all sound familiar? My husband and I are pretty much her only care givers. Despite the fact that she has four other sons.

MIL currently lives with a friend but I can see that that won't last too much longer. She is basically destitute and lives on SS. I'm really worried about what will become of her in the future. She has no long term care insurance and relies on Medi-Cal and Medi-Care. I have a tiny home with one bath and while a really love and respect the woman I don't think her living here will work. It's hard enough for me to take care of a child with a chronic neurological condition. Of course a couple of my DH brothers have larger homes but they seem unable to help. One even said that he can't have her at his house because he's afraid she'll burn it down!

If one of them would take her we could have a nurse in. I wouldn't mind helping pay for that at all. A couple of the BILs seem to be in denial and it makes me really angry. They just won't deal with her at all. There is no way my husband can have his mother in a state run home. We can't do that to her.

Sorry this is so long. I guess I'm just looking to vent. I feel so bad for her. She's had a hard life and is a breast cancer survivor. Now this.

Martha H · 08-22-2005, 05:44 PM

Oh Buliem - welcome to the club. It is so frusrating and sad to hear the same stories over and over again ..we have all been there and done that, so you will find very much sympathy and understanding here.

It's always so similar: one of the children (in rare cases 2) take care of their elderly AD parent, while the rest deny there is any problem or, as in the case of one of your BIL's says "she could burn my house down."

The incessant repetition of questions just answered, the repeated activities such as filling up a bag of tomatoes 2 or 3 times and getting friut ready for your son over again are 100% typical.

My 96 year old Mom has it, and I lived with her for 5 years; now she lives with my brother and SIL because they realized I was going bananas. I couldn't stay with her 24/7 because at the time I still had a full time job, and now I have neither Mom nor employment (and am finally relaxing, getting my BP down and having a normal life..)

Being the only or the main caregiver for an Alzheimer's patient is a daunting task. It helps to have a sense of humor, to vent on this Board or somewhere else when it gets just TOO bizarre, and to consider the person's safety and health more than their requests and desires (which change from minute to minute.) They all have to give up the car sooner better than later, they all forget to take meds or take 3 days at once (Mom used a 7 day package for AM and another one for PM but soon couldn't do even that correcty and I switched to hiding the pills on a high shelf (she was afraid of falling) and just put out the ones she had to take at breakfast and again at suppertime ..until she FORGOT she was afraid of falling and climbed up on a shaky kitchen chair to get ALL the pills down in my absence ...

Oh I could fill up 100 pages with all the stories. Please know you are welcome here and we will do what we can to help you cope. My first piece of advice is let her ask, let her confuse and misundertand and don't even try to correct or explain. Second: get whatever legal powers you may need to decide for her when the time comes (POA) ..and IF she has no assets except social security, you can place her in a nice nursing home which will be paid for by Medicaid. My Mom has just too much to get on Medicaid, and we have way too little to afford the horrendous prices of nursing homes on a private basis ..

Good luck and God bless you and come back...

Good luck with your son also. .My grandson was on an anti-convulsive drug for 2 yrs after a long lasting seizure at age 2, but now they have decided it was not epilepsy but a febrile seizure, maybe. They have to keep an injection in the house just in case ...

Love,

Martha

BarbaraH · 08-22-2005, 09:11 PM

Hi Buliem -

Sorry you need to be here, but glad you found this place where you can say just about anything and we'll say, "Yep, I understand completely."

If you read the other posts, back pages even, you'll see as Martha said, there are many who are trying to keep the boat afloat without the help of any of the family. Sad, but true. I hope you can insist on a family meeting about MIL so a plan can be made. I hope a satisfactory plan to keep your MIL safe and well fed can be found. It's not easy.

You're not alone on the unwelcome road.

I hope your son inproves, too.

Bless your heart - Barbara

WannaBeFreeToRoam · 08-22-2005, 09:57 PM

Hi buliem,

It sounds like you have your hands full! And trying to keep yourself sane too. That is what we are here for: to listen to your vents and rants and to do ours too. You will find a lot of compassionate ladies here. And they are really funny (stress relieving) sometimes too!

I could not live with either of my parents. Maybe put a mobile home in the back of our land (13 acres), that is as close as we would get! My father has alzheimers and parkinsons and my mother has early dementia and uncontrolled diabetes. They are living together and helping each other and I go there 1 - 2 times per week, plus Dr. appts. too. Do not feel that your MIL has to live with you. There are/will be other options.

My father sometimes leaves a pill in his M - F container. My mother does not help him do that very well. She does ask him if he has taken them yet. He has an AM & PM one. If I am not coming on my normal day, or if I will be away (always less than a week), I do it in the middle of the week and just add the days that are missing. Does that make any sense?!

Anyway, come back, as much as you need or want. Someone will usually be here to talk. Take care. Wannabe

buliem · 08-23-2005, 03:12 PM

Thanks all. I really appreciate it.

I was up half the night worrying about MIL. She's only 68 so I know we have a long road ahead of us.

I will definitely think about all you had to say.

Martha,
I clued in right away about not questioning MIL or getting upset when she forgets things. My son takes a lot of meds for his E and he can be almost as forgetful, so I'm used to it. It seems to aggravate my BILs the most. My husband has stopped getting exasperated. We know she can't help herself. We are just very patient with her. It's the meaness that gets to me. I know it's just that her filters are now off. She forgets it all the next minute anyway.

I'll be visiting periodically for venting and info. I did this when my son developed the E a little over a year ago and it really helped. He's stable for now so I can devote more time to helping MIL.

Thanks Again,
Julie