How important is routine for a person with dementia/Alzheimer's?

I took my mom out of the rehab she was in. When she got home it wasn't a burden. I took a shift and had other family members do a shift and hired outside help for limited shifts. The trick is not to overburden yourself. She loves being home and owns her home and has the money to pay us all a modest hourly fee. She didn't do well in the home. She lost weight and gave up. When she got home she started eating and is doing very well. I understand some people can't do this but if you can, don't send them away.

I have found with my grandma who is 86, that routine is everything. She likes to eat the same thing for breakfast. Sometimes she will tolerant different snacks but lunch is usually a pasta meal. Then likes to have an evening snack. She has her naps under a routine a morning nap 10:15 to around 11:30. Then again in the afternoon 1 to 3. These naps make her sleep at night. If she misses one or both, her whole night is off.

Moving furniture or anything else is upsetting to her. We as a family are moving to Maine in 3 months and I'm dreading the effect that will have on her mind as it's a whole new house, new location, new doctors, etc. I hope it goes smoothly.

where are ya'll seeing dkjellander's comment?

Wonderful responses from the community. Routine is essential to most people with dementia because it's reassuring. As was mentioned, routine doesn't have to be boring, but for the bulk of the day people should know that they do this, and then they do that. Even if they need help with all of it, routine is calming.

One caveat: As was mentioned, sometimes we have to follow their lead. If your loved one wants to do things differently, then it's okay. Rather than argue, go along with it. But encourage routine when possible.

Think of it this way. Many of us sleep better if we have a routine of some type as we prepare to wind down and (hopefully) get ready to sleep. This routine tells our brain that sleep is on the agenda. It's not all on a conscious level. So routine is likely to help your loved one just because familiar sights, sounds and body movements are involved.

Good luck. Everyone is different so all we can do is offer suggestions.
Carol

Many thanks! This site is a BIG help.

How important is it? Very.

Daisy001 My mom will be going into assisted living ever so soon. I am looking forward to a time when she is no longer in her dark bedroom hoarding food, surrounded by everything at her fingertips so she can 'remember' it all. Been a long year, she's very upset with me but that's ok, I believe she will LOVE the routine after she adjusts. She called me last night at midnight to beg me not to send her :-/. All these responses ring true :)

dkjellander, I guess the bottom line from either side is that we just have to figure out where they are going and try to follow them and help. It is good to have company in this boat - now if we just knew where we were going.....And good luck this week. It makes for a difficult week when we don't get in the car and go somewhere.

routine doesn't always mean sitting inside, it means Wake up breakfast, lunch, dinner and bedtime and meds are at the same time, some people believe in going Willi Nilli especially when our 86 year old goes for a visit, when she returns, you got it, it is just like how the children came back after spending the weekend with their Dad(defiant and out of routine).

A stroll inside specialty shops in a mall or to window shop is free.
A library is free, they have records?,tapes, movies, etc.
Ours goes to day care 4 days a week.
in the evening she is glad to be home, but when we have to go shopping, pick up her meds, of course she goes to one doctor or the other every month, it does get busy, of course i am in college, so she goes to and from school when I go for the 10 minutes to and from...we do the Sit and Be Fit exercises in the morning, check them out they are so cool and if you do not get them in your area, check them out on youtube or at their website sitandbefit, Mary Ann Wilson does exercises standing and her daughter Gretchen demonstrates sitting, but all the exercises are sitting.Good Luck! Could be because she doesn't walk that moving in the care feels like flying, but some babies love the car for sleeping to so it must do something for the nerves. Smile! Good Luck!!

dkjellander I have an idea for you, if your Mom has decent vision. Write a schedule for her for each day at the top of the page write the day of week and date... give her one day at a time only!!!!
Today is Tuesday March 26,2013
On the paper write that days events such as 7:00am eat breakfast 7:30 take medication 8:00 get dressed 9:00 watch morning show 10:00 sister is taking you out to shop etc. if you can have a clock in her view so you don't hear "what time is it?"... all day long either and then if she asks at night what she did during the day... you say read the paper Mom you tell me. You might even ask her to write a comment about the events or cross them off as the day goes on so she doesn't go backwards on the schedule.
Just an idea... I know my mother forgets but she does find her way by signs and schedules ...
I said to Mom one day I'm going in here to go to the restroom...I almost walked into a linen closet at the nursing home and my Mom said can't you read that's not the bathroom then she pointed to the sign on the next door and said "see RESTROOM" LOL BOY OH BOY did It make her day that I was confused and she wasn't!!! I opened the door and she said "see there's the toilet, yep SEE this is the right door"

KateAnne,

I understand for some routine is necessary, but the opposite side of the coin is all of the time planning and money involved to take her out.

Yesterday, I had made arrangements to have lunch with some former co-workers, they knew my mom would be with me. My mom had not been out in a couple of days. My mom was so ready to go out, she kept getting on my case that I was moving too slow and she was ready to go.

She was so excited to be out and even just driving that she was talking about the buildings, billboards and whatever she could. It was driving my husband crazy because he was driving in traffic. But she wanted to go out that badly, she was ok after a bit, but the excitement was incredible.

We have told her this week we are staying in because we are saving money because my sister and her family are coming, so they can have a vacation with mom. So once Saturday is here, we will be going in and out everyday, eating out, spending money and the like. I think she understands, but I am not sure she does.

So by keeping her in, I am about to have a not so fun period. My mom is going to become cranky, agitated and much more because we stay in. We have things to do believe me, she is suppose to be crocheting a baby afghan and working on squares for me to sew for a quilt. Even with this to do, she will become like your mom when you moved things.

It is interesting how they behave, but the opposite side isn't so easy either. We travel in a 5th wheel so it isn't easy to get mom in and out, but we do it. My mom also does not walk, so we have bonus challenges. But we try to make the best of it, but this week is going to be tough for us because we are in a routine, so you may want to pass the baseball bat this direction. :-)

KateAnne, would your mother consider wearing a wireless head set to listen to the tv at any volume she pleases? My husband did. So far my mother won't. It is worth a try, maybe.

My mother stayed with me last weekend. I try to respect the routines my sister has set up for her, although being in totally different surroundings is an extreme break in the routine anyway. Friday I told her I needed to go to a big garden store for some house plants. If she wanted to go we could do it that day or Saturday or Sunday, or I could wait to do it next week. "Oh!" she said, "I need a new plant, too!" She was in her coat and sitting in the wheel chair before I even collected my purse! She loved the aisle-after-aisle of common and exotic plants, including awesome orchids and Easter lilies in all sizes. She picked out an African Violet, which we used as a centerpiece while she was here. My sister said she is so proud of that plant and she talked about the big plant store.

Routine is excellent except when it isn't. Outings are upsetting except when they aren't. It is a case-by-case, day-by-day judgment call. All we can do is be open to the fluctuations in our loved one's frame of mind.

dkjellander, count your blessings. My mother has had trouble hearing the Tv without it being turned up loud enough to make you cry. So, silly me, I moved her chair five feet from where it was to a location closer to the TV. OMG!! Mistake Mistake Mistake!!! She came unglued!! I immediately moved her chair back to its original location. She is now sitting in her chair with her head in her hands as if I had put her outside in the driveway in the snow. Even after I have returned everything to its original position (things were moved out of position less than five minutes), she is devastated. Will someone please hit me with a ball bat and make it stop!!!

I love this newsletter. My sister and I found it while researching what to ask while looking for Care Facilities for our Mom.
Mom lives with my sister who is her main caregiver and with her 24/7.
I live half a block away and am with her in the evenings. I have seen the toll dementia has taken on both of them.
In the beginning Mom was still insisting on being as independent as she was before the dementia became apparent. She wanted to 'go' when anyone left the house, she wanted to be involved in anything going on with the family, she loved to be invited to someones house for any reason. She raised 10 kids. We always joke, "it's no wonder she lost her mind". (You have to help keep each others spirits up and humor is our weapon of choice.)
As the dementia progressed, Mom gradually stopped being involved. She had a hard time remembering names and who was who, she would constantly ask to go back to her own apartment which she hasn't had for years. It became increasingly frustrating for her and for us to constantly remind her of changes that had been made due to her declining mental capacity. We resorted to telling her that the Doctor said she could not live by herself. It was the truth but it sometimes felt like a copout. As the dementia has progressed, the daily routine became more and more important. She stopped wanting to go and eventually stopped wanting to even come out of her room for meals. The more memory she "lost", the more little things seemed to gain importance. It seemed silly at first until we realized those are the only things she has any control over now. She can't remember her childrens names but she knows where her water glass and her glasses are. It is amazing how much our memories influence our lives.
At this point, she has progressed to needing more care than we can give her. Sometimes you have to seek outside help. It's that time for us. That comes with its own set of ups and downs and a lot of guilt that we have to work thru. Good luck to you all.

Routine is very important to a person with dementia.
She is comforted by her routine and knowing where things are.
She did get OCD with her purse and we had to remove it (she could not stop checking for her glasses and inhaler) so when she goes to daycare the glasses are in her knitting bag and when she is home, the glasses are on her nightstand.

We have very little problem with sun downing issues,
because she basically does everything the way she used to,
including going to daycare, instead of work,
she worked part time until she was 82.

I tell her to get her own coffee and cream,
because I am making oatmeal for breakfast, her favorite.

I had to laugh to myself when I read "dkjellander" comments about her mom. My brother had taken my mom out for a ride to get some air. When he brought her back, she asked him why did he bring her back. She also said he could have kept driving to take her some place else. My mom was never one to be idle, but some routine is good. She goes to adult day services during the week. Some weekends she does not want to go out, others she is ready to go. Sometimes it is good to spice up life a little. Whatever works best for you and your love ones, do it. I will say none of us like confusion, drama, etc... It is all life's journey.... we try to enjoy the ride when we can.

dkjellander, you are absolutely right. Routine is a life-saver/sanity-saver for some people with dementia. Other thrive and do much better on some routine and some variety. The proportion of routine to variety varies with individuals, and finding that balance is one of the huge challenges of caregiving. My husband, like your mother, needed a lot of variety. His bedtime routine was very set in stone and variations there were not good. Getting up and ready for the day was almost as routine. But the rest of the day was pretty open for variety.

If your loved one needs routine, by all means provide that routine. The need for routine varies by individual.

I find it very helpful for both of us, she seems to do okay so far when we need to change things around...her Dad died a few weeks ago and we needed to travel and that went well..it all depends good days and bad.

Unfortunately, I disagree with the group on this. My mom has Alzheimer's and the only routine she likes is getting dressed and going to bed. Outside of this routine, my mother does not want to do the same thing everyday. In fact, if we keep mom inside for 2 or 3 days and do not vary her day, she becomes worse as does her symptoms.

I realize that doctor's might say routine is important, but you have to look at the individual that has dementia or Alzheimer's and treat them as an individual. I do not believe we can lump everyone together.

I am serious, if I did what some of you did with my mom who has Alzheimer's she would be far worse than she is. We try to do one day inside and one day out. Whether the outing is taking her out to eat, for a drive, shopping or site seeing, we have to do something or else she gets cranky mean, forgets even more and gets more demanding.

So to answer this question, please know you cannot lump everyone into it because my mom only has a routine is what she needs to get dressed and go to bed. In between is a whole other story, so remember we have to look at the individual because not everyone fits into that box of the same routine everyday.

Oh so true,routine hads to be otherwise things will be hard to deal with all day.I take my love to a casino now and then mostly then. But I can see her confuse state. Because I took her out somewhere .

You guys are ALL fabulous! Thanks so much for being there to share the load with all of us! Amazingly blessed!

My husband and took his mother in to live with us in Oct. She has dementia.She is 90. The stories she comes up with are so funny, you just have to go along with most of them if you tell her differant she gets fustrated. We are learning along the way. She was doing real good but now can hardly walk. We as a family feel it is time for her to go into a home. This will be hard for us to let her go. But they have the skills to help her.

Not only is Routine essential it takes a long time for it to set in but once it does it is the one thing they hold on to. My mom has Alz and after nearly a year she remembers that she goes to day care every day (she calls it work) and that her boyfriend (bus driver) picks her up and brings her home. She still forgets that she lives with me but that is because sun downers sets in right about the time she comes home and lasts for a few hours. But, she still remembers day care as work and her bus driver picks her up.

You know,,i have worked with alzheimers patients in the pass in nursing homes now i go to their homes and i personally i like it.The Thing is they are in their homes and they can established a regular routine and sometimes its hard to get them out of it espcially if they are used to it pulling away a routine from a alz patient will cause problem, you are intrupting the lifestyle they didnt ask for..it was their mind that put them there and its sad but we have to make the best of it ,so setting a routine for them is the best thing for them to me. i have worked them for years now and to tell you the truth i really enjoy working with them...

I am also thankful for this website, it is so enlightening and an eyeopener. My 88 year old husband is a stickler for organization, and things put back in its rightful place. He was looking for his urinal a few days ago under the end table near the couch in the living room. He did not see it in its usual place. I saw it by the front leg of the table and could not understand how he missed seeing it. I moved the couch so he could see it but he was so busy making a big nasty fuss about why was it moved and why can't things stay where he knows they are. I was being attacked for moving it when he used it and placed it in the spot where it was. He forgot he placed it there. He knows I have an issue with the urinal in the living room let alone one is placed in all the rooms that he frequents. He has even walked past the bathroom to get the urinal in the bedroom. This has turned into a lazy habit from what I can see. I am at the point now to just let them do what they want to do. These are their habits and I cannot change it, logic and reasoning has gone out the window.

wuvsicecream - you are right on! I hate going back to a remodeled grocery store. And I've thot the same thing "now I know how she feels."

suzycaregiver
You are lucky that works for you. My mom hides her things all the time. I do a quick run through and if I don't find it, she'll say "I haven't had that in years, I must of lost it." Often it is her purse she had 5 minutes before. I have told her to place purses and such right on her dresser where she can see it. She always says someone will steal it from there. I cannot win.

My mom has moderate dementia and lives with us. She is often misplacing things but does not care if I move anything in her room. I often suggest it would be easier for you to get at if it is placed here and she is happy with that. I am lucky she is this way after reading other comments. She does forget where she puts things and that at times gets me very angry.

Wow I just had a revelation.... As I am reading through the posts about routine, It hit me as to why parents give children a difficult time, how they lose their patients with family and not strangers, and possibly why they want to go home when they are home...... It's so simple, that it's not obvious ....it's not routine, for years they been teaching and guiding us keeping us safe, cleaning up for us, caring for us when we are sick, driving us around, making us take a bath, etc. They might want to go home because in their home they don't have to listen to anyone tell them this is how we do it now, even if they are home they don't feel like they are at home because in their home they tell you how it is going to be.
I knew this but I never look at it as a routine issue.

I am nearly 65, don't have dementia, I need routine. It make me feel more secure. I still have a job, drive, cook, sew, clean, exercise. bathe myself, etc, but I really need routine. You can set your watch by my activities. Fortunately, I live in a safe neighborhood.