Qustions About Alzheimers

Updated on December 22, 2008
D.M. asks from Kansas City, MO
16 answers

Our family is going through a crisis. We have learned that my mother-in-law has alzheimers, we have suspected over the past several months. But recently she has had a fast decline in her abilities, and then we finally had a diagnosis. My question is what now? The family is very close which is good, so we are trying to get organized, so we can help her and our father. But where do we start? How do we step in without stepping on his toes? What do we say to the 20+ grandchildren most who are under 13? She isn't bad enough for a nursing home, and if she was, we don't want her there anyway. I am so stressed that I am not being very articulate, but HELP!!!

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answers from Kansas City on


Contact the Alzheimer's Association at www.alz.org. They can help you understand what is coming. My grandmother had the same problem. There are medicines that can help lesson the confusion and help her stay mentally alert longer. But this is a long slow slide that can be heart wrenching even in the best circumstances. Let your father-in-law know you are all there for him. He will need your help and watch his health. Care giver stress can dramatically effect his overall health. Tell your children what is happening with grandma they need to understand she is going to start changing.

It usually starts with looping conversations and name confusion. Then progresses to inability to perform everyday tasks. Your family will need to have a plan for how to handle each stage. My grandmother eventually had to be transfered to a nursing home that had an Alzheimer ward. The most ingrained behaviors are the last things to go. My grandmother was gracious and kind to everyone till the day she died. However she had no idea who's baby she was holding when I handed her my daughter for the first time.

God Bless,

J. N.

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answers from Kansas City on

Hi D..

You have lots of good advice here, and this is going to be a long and difficult road for all of you. My grandmother had alzheimers as well and I think it was more difficult for the older grandchidren (like 20s and up)to deal with than it was for the little kids. Number one little ones are resilient, number 2, little kids and old people get along because they're very similar! I might mention that grandmother forgets things, etc. but they may or may not notice. Little kids like to repeat stuff and tell the same stories and make stuff up, just like alzheimer patients, so in that respect, they can entertain each other.

I of course agree with everyone else to get help where you can from groups, organizations and doctors. But, be prepared to be really hurt, angry and confused by this disease. I understand also that you don't want to move your MIL to a nursing home, and it is probably not necessary right now, but if things are declining as rapidly as you mentioned, my best advice is to not rule it out just yet. There are many places that specialize in Alzheimer's care and depending upon the condition of your FIL he can live with her or commute, which sounds horrible, but like I said, keep an open mind at least.

Good luck and stay strong.

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answers from St. Louis on

We are going through the same thing with my grandfather. First, be honest with the kids when they ask questions. Does she still know who everyone is? If she does, great, if not, tell the kids Grandma is sick and sometimes she won't remember us, and sometimes she may say funny things, but she is still grandma and deep down she knows who we are and loves us. (I worked in a nursing home some time ago with Alzheimers patients.)
As for your dad, be there. I am still trying to convince my mom and her siblings to make a schedule of days that someone will stop by to visit. They don't need to do anything, just to visit, although cooking a meal or doing a load of landry would be helpful. The visit is more for your dad than mom. He'll need a break, if it's just to take a shower without worry.
Alzheimers is one of those diseases that is more painful for the family than the patient. Good luck and I have always felt that Alzheimers patients know what going on and who you are, they just can no longer articulate it. I'm so sorry for the diagnosis, but now you and your family can be proactive with helping them.
Visit both, have someone stay with mom and someone else take dad out for a meal or to do somoething he enjoys. Also, try to remember that not a nursing homes are bad, many have incredible Alzheimers Units, it may be needed in the future. Also, contact the Alzheimers Association, they have support groups for all members of the family and they can help with questions you have.
God Bless and have a wonderful holiday with your family.

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answers from Wichita on

God Bless you D.. I know from where you are coming from and going in the future. My mom passed in Aug. this year.
She had, had symptoms for the last 12-14 yrs. Nothing really serious at that time, just a little forgetful.

Please do not worry about stepping on toes, your dad is going to need all the help he can get. The caregivers think they have to do it all. Then they are worn to a frazzle.
My step dad was the same way, he thought he had to be with mom 24/7 never leaving her side. She went with him everywhere. His sister, my sister in law were only two of the others she would go with without problems.

Be kind and understanding if she forgets a name or face. I always walked in and said Hi Momma It's K.. Our Gr children are a lot younger then yours. Eldest is 9,8,4,31/2
plus 15 month old. I told the oldest ones that Gr Grandma had an illness that caused her to forget things, and If she asks who you are just say I'm Tia Grandma and I love you. She might ask 10 times always be polite and tell her your name.

D. keep an open mind on the nursing home or Adult Care. I forgot to see where you live but in Wichita, St. Francis has a wonderful Hospice. There are several Adult care facility's that will take Alzheimer's Dementia patients.
No one can tell you exactly what will happen next.
They could stay like she is for a very long time or lose ground quickly. They could stay docile and gentle or be abusive and violent. As my Mom did. Even in the hospital she could kick you across the room, which she did to my Sister in law and step dad on two occasions. She could be so gentle then look at you and you could see the confusion and fear in her eye's.

So many Alzheimer's patients personalities can revert back to childhood, she may call you her sister or mother, your dad may become her dad. If she sang in church she may sing those songs again, or hum constantly.

You will have so many decisions to make down the road.
My Mom started having seizures July 28, she was a small build, 130. It took 2 large EMT's my dad and Bro to get mom on the gurney and strapped down to transport. Her seizures last at least 4 hours. For each minute of seizing 1,000's of brain cells are destroyed. Mom was in Med ICU for over a week, She had to be restrained most of that time. Then to private room. I stayed with her every single night making sure she ate. Hospital staff will not encourage or coax a patient to eat. They might ask are you hungry and if they get no answer they leave. Later you must decide how much care your mom will receive. We ( dad, bro. sis & I) decided to place a DNR on Mom. Do not resuscitate. Was one of the hardest things to do. But we couldn't see making Mom live like that. DNR means no extra measures taken. She is to be kept comfortable. No Electric shock to restart her heart, no incubation's (breathing tubes)

Dad tried to take mom home once. He thought she wouldn't be so confused or violent if she was in her own home. 5 hours later he had to call 911 again. Mama went ballistic, climbing on the furniture, the counters in the bathroom, ripping her cloths off. etc She has a little poodle Abby whom she carried with her always. She was holding her so tight she almost crushed her. Was hard for my brother and dad to get Abby away from mama.
She was then taken to Hospice at St. Francis. I continued to stay the night shift as I still had the two gr son's to watch during the day. I would get there at 6-7pm and stay until 5 am drive home to get the boys at 7. My dad would arrive at 8 to see the Dr. etc.

Medicare or Medicaid will only allow a patient so much time in Hospice. They tried to move her twice and we prayed they couldn't. Two places turned her down cause she couldn't feed herself and had violent tendency's.
They finally found an Adult Care Facility on the W. side of Wichita, that would take her. Dad offered the Hospice double the cost to keep mom at least one more week that it was going to cost him to move mom to this Care facility. Would of been over 10,000 to keep her if they had accepted. They couldn't. Cost for the Private care pr month NON refundable was 5,600.
They moved Mom Aug 18, at 1 in the afternoon. Dad & I were with her for a while. I stayed longer as this place would not allow family to stay over night. :( I talked to mom for a long time, held her hands and told how much I loved her.
I had lost my step mother Aug 20, 07. I walked around the room and said Dear-Dear you and mom shouldn't have any hard feelings now, It's ok if you tell her how Wonderful it is there with the Lord.
I kissed momma told her I didn't want to leave her but had to pick up the boys from our other son's home to take home.
I kissed her again, hugged her, told her I loved her would see her soon. Cried all the way home.
Dad called at 2:30 am Aug 19, Mom was gone.

I know you didn't want or need to read out story, I guess I needed to share a little Christmas is just next week and It is so hard for all of us. Especially our step dad, they were married 43 yrs. Did everything together. He didn't share Thanksgiving with any of us, will be with us for Christmas though. Sister & I went over and decorated the house for him. He just can't handle some things yet. Might never be able to do some of the things they enjoyed together.

I pray God's blessing to cover each one of you, giving you strength and courage to walk this walk with Patience and dignity! www.Alz.org is a great source of help. I particiapted for the First time in The Alzheimer's memory walk this yr in Oct. 2 months after lossing momma. I built a web page for her with a donation area. I built a team of 8, to walk with me. Surprised me it is still up there :)
This is the page link It's long so not sure it will come though. But there I placed a picture of my Mom with her 35 Hudson, Her and Dad loved rebuilding old cars to show & display.

God Bless you D., please keep in touch if you would like.

K. Nana of 5

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answers from Kansas City on

Hello D. and family.

I worked on an Ambulance for 8 years, was an ER nurse for 6 years and most recently I work for a Home Health agency called Blessed Health and Home Care ###-###-#### based out of Kansas City, MO. We have a lot of patients with Alzheimer's disease. There is no reason your mother in law cannot stay home with family. Sadly, this disease is taxing on the entire family. There are prescription medications she can start taking to help slow the progression of the disease. You can help by making sure that your dad has extra hands, especially as the disease progresses. It is VERY important that the care giver get a "break" to reduce their own stress level as well. You can offer to "sit" with mom while he gets out of the house, even if its only to go to the store, etc. As the disease progresses, you can assist mom's memory by using a dry erase board as a "daily" calendar, place large family photos around her with names on them around the home, etc.

You can also notify agencies like ours and they can help with a home health aide or a certified nurse assistant to come into the home and assist in daily household activities. Your dad may be resistant to the term "help" if offered. Try using other words like "assist" so he doesn't feel like he is "begging" or like they are losing their independence. A Home Health agency can also assist with medical supplies, daily grooming, bathing, etc. as well as nurse visits in the home to monitor mom's health, answer questions, set up medications, etc. Please don't hesitate to call.

Take care and God Bless :)
T. W., RN, BSN

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answers from Topeka on

Hi D.. I just want to second the people who have said find support for your FIL with an Alzheimers org. Your MIL's needs will be changing constantly and he'll need to be thinking about what he needs as well. It would be good to just talk to him about his needs and hers. One thing he will need later on is respite care - time to himself. With a large family, someone could organize the family to take turns sitting with your MIL while he takes some scheduled time out. And please don't rule out nursing home care at some point. No one need feel guilty about this - there are lots of lives involved, not just your MIL's. Some communities have excellent places that specialize in care for Alzheimers patients - find out what exists in your area. Don't let your FIL run himself into the ground. God bless.

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answers from St. Louis on

Hi D., Sorry to hear about your MIL. WE are going through the same thing with my Grandfather and it's really hard. First of all try to make sure that your FIL know that someone will be available if they need anything - like rides to the doctor. And don't assume that because you told him you'd be available they will call you up and ask for a ride. We try to find out when my Grandfathers appointments and then one of us makes sure that we just call our Grandmother and tell her that we'll be there (she dosen't like to drive very far). Also, remember that your FIL will needs some breaks. My Grandmother is still on a bowling team and we make sure that someone goes and checks on my Grandfater or at least calls him to remind him where Grandma is. It's a sad but funny story on how we started with that, my Grandmother went bowling and they all went to eat afterwards. My Grandfather forgot were she was and called to police to report her missing. She was out later than usual. Anything out of routine upsets him. If his routine is the same then he's fine and most people don't even know that he has alzheimers. But if you guys can, try to give your FIL a little break. Have someone take MIL for lunch or just come stay with her while FIL can get out a little. Also, if MIL isn't real bad yet, but you don't want her alone then you may have to be sneaky about checking on her to staying with her. right now my Grandfather really just needs someone to check on him and we just call and pretend we don't know that grandma is bowling.

You may also want to make sure that they have their will and power of attorney for financial and medical up to date while you MIL is still able to understand. We just did that a couple of months ago and that was such a releife for my Grandmother to know that if anything happened to her that my Uncle and I are all set to step in and take care of Grandpa

With the kids thats hard. We have explained to my 7 and 5 year old that Grandpa is sick and that what's wrong will cause him to forget things. And may even make him act diffrent. My Grandfather was always the most easy going, paitent person. Now he's a worrier and short tempered. The kids know that he's not trying to be mean the it's the Alzheimers doing it to him. It's hard, my Grandparents raised me so to see this man that I thought (and still do) is the greatest on the planet decline is so hard. But he's on the medication and they has slowed the decline but we can still tell a diffrence. But one thing is that he knows what is happening and he loves on the grandkids more and talks with us grown kids more. He never did that before.

Good luck and pray a lot. That will help more than anything.

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answers from Kansas City on

For our family it has been best to explain to the children that Grandpa (for us it is grandpa) has a sort of sickness and he may not have memories. Honesty has worked well with them. For those who know her they will have a hard time understanding why she doesn't know who they are. She may now but it can happen fast.

Three weeks ago I was one a few he remembered and now he knows who I am but didn't know that I was his sons daughter. He new me by name but not by relation. Asked me whose kid I was. That's hard I am the oldest. It has been hard on my three year old also...she refers to him as grumpy grandpa...he does not like loud noises, small children and a as soon as he arrives somewhere he wants to leave.

WIth that said your FIL MUST get involved in a Alzheimers group...as previously posted check out the Alzheimers website for area groups. The group my grandma belongs to has helped her. Also the drugs work wonders, seems hard at first but when the outburst start it can make lives better. He'll need breaks and any help.

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answers from Lafayette on

horrible disease, my grandfather had it. How to help father in law, I would say just ask him. This is going to get tough, tell us what you need. Offer specifics and let him accept or decline. I wouldnt just jump in and DO though, unless he's having problems also. As for the grandkids, just explain in age appropriate ways what they can expect as mother in laws behavior changes. You may want to look into nursing homes though. My grandmother took care of my grandfather at home and it was SO incredibly tough that it ended up almost killing her. Just look around at options, so that if it gets overwhelming you have options, that doesnt mean you have to go that way.

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answers from Kansas City on

The Alzheimer's Association has a helpline you can call, and they can provide you with information about available support services for your mother-in-law and your father. The helpline number is: ###-###-####, or the main office in Prairie Village is ###-###-####. Take care!

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answers from St. Louis on

God bless you and your family. We are in a very similar situation, as my father was diagnosed with alzheimers 5 years ago. Unfortunately, we are familiar with the disease and what to expect because my maternal grandmother died of complications from alzheimers. My poor Mom saw her mother suffer from it and is now watching her husband. Like previous posters my advice would be 1.) get support from the Alzheimer's Association. They are an incredible support group! 2.) Despite his protests, give help to your FIL. My Mother refused help with my dad in the beginning, but we basically told her that her grandchildren were already losing one grandparent they loved, they didn't need to lose two by her being stubborn in refusing help and not taking care of herself. We take turns staying with dad so she can have some "her" time. We also go over and spend weekends when any of us can to help with the daily rituals/routines. 3. In regards to the kids, like a PP, we spoke to the children (ages 17 to 2) and let them know Pops had a sickness that makes him forget things sometimes. The older ones know more, but for the younger ones, that satisfied them until they got a little older.

All the best to you and your family!

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answers from St. Louis on

Merry Christmas All,
I lost my father (75) to Alzheimer disease. He was an intelligent man, so for years was able to use different brain pathways for functionality. I have 5 sister and we are close, but it was my mother (70) who was driven to as well as capable of taking care of him. It is a messy situation similar to toddler care. No rugs, and lots of disenfectant. In the later stages, my father would go to the bathroom while walking (but still was able to take his clothes off before he went, hence no rugs!) A nursing home will be inevitable. The mind loses its ability to control the body. My father would scratch after he'd mess his Depends. My mother bought him two small stuffed animals for his hands to stay occupied. Dad was a pilot, so she named them Orville and Wilbur. She repeatedly said that Dad took care of her for 54 years now it was her turn to take care of him. Help, but never take away what is someone else's vow to another. You all can make your own vow. Help each other to help them. Google helps too.

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answers from St. Louis on

Hi D.. I am so sorry that your mother-in-law was diagnosed with this terrible condition. I was a alzheimer and dementia therapist at a nursing home in St. Louis for 5 years. During that time, I consulted with many grieving families like yours. The first thing you need to do is to talk to her physician about Alzheimer/dementia medications. The popular one is Aricept, perhaps you have even seen commercials about this drug. It obviously isn't a "cure," but there is proven evidence that it can slow the progression of the disease. Like I said, check to see if she would be a good candidate for this medication. I know that you said that she isn't in the stages of the condition where she is requiring 24 hour assistance yet...and I know you said that the family doesn't want her to live in a nursing facility. So with all that said, you need to observe her is her own environment, and try and make some observations about her daily routine. Such as, is she still capable to cook, does she remember to turn off the stove, etc. Also, does she still drive?? Is she capable of going somewhere and finding her way home. These sort of daily routine items will obviously dimenish with time, and then she may require more assistance. There are outside caregivers (private duty nurse) that you can find that will come into her home that can assist with her activities of daily living. Such as if your father-in-law has to go somewhere and she would be by herself...then the private duty nurse could come over and help her. If you contact local hospitals or even her physician I am sure they could refer you to some great help. Also, I had the Alzheimers Association come and help me and my department at times. I am sure you could contact them and they would have some great advice to help explain "grandma's" condition to the grandchildren. One last thing I would always tell my families is to bring lots of photos of the family in. Write everyone's names below the photos, so when you are speaking about "suzie" he/she can see the photo of suzie and sometimes that helps them to remember who "suzie" actually is. Also, dry erase boards are awesome. Write down important phone numbers, use it as a reality orientation devise. You can write down the month, day, and year. You can write down if it is sunny, raining, snowing. You can also write down the next holiday, etc. This is a great help!!!! I know that this is very devastating and overwhelming for everyone in your family, and I am so sorry for you and your family. Just try to breathe...have lots of patience...and just remember that reminiscing memories is great for everyone!!! If you need anything, don't hesitate to contact me.

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answers from Kansas City on

I am so sorry to hear about your mother in law. It is wonderful that you have a good relationship with her that you will treasure. You are concerned about how to help her. Why not ask your father in law what he thinks? Let him know you all want to help and would love to get ideas on what has worked for others if its ok with him. Tell him you are there for him and if he needs a break away sometimes to recoup you would come over and sit with Mom. Just knowing he has all his family supports is a wonderful thing. I hope some day my daughter in law will think the same way about me in any circumstance that comes into our family. In the mean time you might want to do a simple scrap book or photo album with large printed titles next to pictures and go over it occasionally with her. You can leave it there for him to go over with her too. Good luck and God bless.



answers from Lawrence on

i haven't read the other responses, but you should start with the alzheimer's association. they can give you resources for your specific needs. i used to work specifically with men and women with alzheimers so i am very familiar with the disease. there are day programs where she could go to give your f-i-l a break. there are caregivers and respite programs and also support groups for the family. let me know if there is any way i can help you.



answers from St. Louis on


I am sorry for your family, it is not easy to watch our parents begin to age and have health problems. I have not had personal experience yet with Alzheimers, but I have a close friend who did. The first thing I would suggest is to pray and have faith. When problems are too big for us to handle alone, I do believe God is there to hold our hands. Sometimes it might take quieting yourself down enough to feel the inner peace you are going to need. Secondly, I do not think your father-in-law will feel you are stepping on his toes at all. As this progresses he will need you all more than ever. I would suggest having a few family meetings with all of the siblings first. Talk over your issues together. What and how to tell some of the grandchildren. How to set up a routine to help them with meals, cleaning, doctor visits, etc. I do not know if your father-in-law works still, but regardless, he will need breaks. There will be times that you all will need to give him a chance to get out. I feel as though I am rambling now, but there is a lot to think about and your family should do this together! It can be hurtful, especially for the Grandchildren, when the memories begin to fade and the forgetfulness sets in. That is the main reason I think you should try to tell some of the older ones a little about the disease. Make sure to meet with the Doctor too along with Dad to discuss some of the best options to help delay the progress. Help Dad get things ready to: papers, finances, everything, so that when the time comes whatever the crisis, he is prepared. Eventually, she probably will need to be in a place with full time care. I know that is not what you want to hear, but most likely, it is the truth. Make sure to check these homes out as a family to decide which one will best suit your Mom. I know that it is hard to think about, but the better prepared you are the smoother transitions will be. A lot of the homes that specialize in Alzheimers have waiting lists, the best ones certainly do.

Also, make sure Dad is getting enough sleep and rest. Make sure he is keeping up with yearly physicals too! This is going to be very hard on him as well as all of you. You need to take care of yourselves too!

I wish you and your family the best. Talk about memories while you can. Maybe even video Mom talking about some of her favorite stories and take pictures of her with everyone. Make a special photo book for the family, especially for the kids to look at. Although she will get to a point when she doesn't remember or know who some people are, you all will. I am sure those are memories you will treasure forever.

May God be with you and your family. May you join together and work through the tough parts together, and never forget that although she may temporarily forget, in Heaven it will come back to her.

With best wishes,

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