norestforweary Asked December 2012
How important is routine for a person with dementia/Alzheimer's?
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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.
If your loved one needs routine, by all means provide that routine. The need for routine varies by individual.
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.
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.
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.
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. :-)
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"
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!!
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
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.