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Schedule? You do not tie them to schedules. You need to be very flexible when working with dementia. A better word is routine that is not having breakfast every day at 8. It means that breakfast may be at 7 or 9 or even noon. Everything that you do, flexibility is necessary.
ROUTINE always, not schedule. And you certainly do not remind the person with dementia "hey it is 10:00, we were supposed to have breakfast at 8, we are already off schedule."
There was no need to nit-pick at my language. I was not implying that I wanted to tie my loved one to a schedule. Rather, I was trying to express that this person didn’t like schedules or routines long before they began experiencing memory issues. Your answer was insensitive and judgemental. You have no idea what my individual situation is, but rather than ask for more information, you judge me. I asked the question out of sheer desperation, and your response was not understanding or helpful at all. Please refrain from responding to any other questions I might ask.
AI, I certainly did not intend to come across insensitive and most definitely was not being judgmental. I have been where you are and learned there was nothing I could do to even try to keep my mom on a schedule.
If you will provide some specific things you are concerned with maybe we can all try to respond in a way that would be more helpful. Caring for a loved one initially is completely overwhelming, there is plenty to learn to try to provide the best care possible while making the stress of it as manageable for ourselves as possible.
Filling oit your profile and letting us know who you are caring for and what their issues are helps us give good answers as well.
In other words, help us to help you.
You asked about establishing a schedule for a dementia patient. I think in general, you keep the schedule in your head and use "now it's time to..." locution to cue them for an activity.
Does giving them a 5 minute heads up help or create resistence? Are they resistant to EVERY announced activity?
Have you tried giving choices, i.e., "would you like to get dressed or brush your teeth?" "Woukd you like to wash your hands or your face?"
I do not do social media or blog or anything of the kind. I did not complete my profile because I like to keep my life private. I only asked the question because I was desperate enough for help to do so. My mother has not been formally diagnosed with dementia. In fact, the doctors do not know what is wrong with her. I suspect dementia. I am trying to help my father who is the one taking care of her. Without a diagnosis, it's hard to know what to do. I had read that a routine was good for patients with dementia, but the suggested morning, afternoon, and evening routines contain far too many activities for my mother to complete in a week, no less in a day. She was an artist and has always been very eccentric and a free spirit. She has always disliked schedules or feeling like anyone is trying to control her. Long before her memory problems started, she would routinely take the entire day to brush her teeth, stand me up for a lunch date, and not go to bed before 3 am. I just want to help my dad make his life a bit more manageable and help both of them enjoy each other again rather than listen to their constant bickering. Here's a typical example of what they bicker about on a daily basis. About 1 pm yesterday, he asked my mother to get dressed so that they could go to lunch and a matinee. She went to her room and called me. We spoke for about an hour before he came in and said, "I thought you were getting dressed." Since they do not keep a regular schedule, I had no idea that she was supposed to be getting dressed for the movies, or I would not have talked to her for 1 hour. She says, "I'm talking to our daughter." He says, "If we don't leave soon, we won't be able to make the movie." She says to me, "I have to go. I'm being threatened." I say, "Dad is not threatening you. He is explaining to you how movies work. " This sort of thing happens daily, and has been happening for about 20 years, but a few months ago, she began experiencing cognitive symptoms that scared even her; so she asked my dad to take her to the doctor, something she has always refused every time we brought it up before. Since that time, things have worsened. My dad is exasperated. He is older than her, and needs outside stimulation. If he just did what my mom wanted to do, they wouldn't leave the house for months on end. He is also paralyzed, and my mother has refused to cook for about 20 years; so going out to eat is easiest for them and something that they do daily. I suspect that on this particular day, by the time she got to her bedroom, she had forgotten what she went in there for. I didn't know if maybe putting a note in her hand that said, "Get dressed. You are going to the movies" would have helped, or maybe escorting her to the bedroom, reminding her she's supposed to get dressed, and then setting a timer? I just wanted to give my dad some ideas of things to try. And yes, giving her a 5 minute warning makes her angry and slower. Giving her a 30 minute warning usually does too. One has to be very strategic, measuring her mood, calculating how important being on time is, not giving more than 1 or 2 warnings a day, avoiding warnings at all if you gave them yesterday. Here's another recent example. On Thanksgiving, my dad told her she had 1 hour to get dressed before they had to leave. After 2 hours, he told her they were supposed to leave 1 hour ago. They arrived at their friends' for Thanksgiving dinner 1 hr late, and my mother tells her friend that it's my dad's fault they're late because he lied about the time and told her she had 2 hours to get ready when she really only had 1 hour. They have clocks in every room of the house, and at least 3 in their master suite where she was getting ready. Medicare will not pay for anyone to come into the home and help my dad without a formal diagnosis, and my brother and I both live and work out of state, and our jobs will not allow us to telecommute. My parents will not move to where we live.
Aginginfo: Holy cow, that's A LOT for your dad to be dealing with! I know that dementia sufferers take FOR-EVER to get ready, so they have to be helped out very early in the day in order to be ready 'on time' for things. But to take all day to brush one's teeth..........that's extreme! Paranoia and placing the blame on others is also common with dementia..........I see it all the time with my mother who is in moderate stage progressive dementia, diagnosed in 2016. I'm really not sure how you can help your dad manage this situation. Normally, I'd suggest having your father keep after mom to remind her about getting ready. But given what you've said, it seems like dad has to walk on eggshells gauging mother's moods and attitudes before he can say or do anything, which just makes things even harder and a lot more frustrating. I guess mom needs a medical evaluation and a doctor's recommendation about what to do next.......does she need in home care? Does she require a Memory Care community? Perhaps some medication can be prescribed to help her manage anxiety, if this is what's being witnessed with her behavior. A plan of action needs to be formulated once you know what exactly you're/she's dealing with.
Wishing you all the best of luck in such a tough situation.
Lealoni1. Thank you for understanding. She is under the care of a neurologist who has yet to prescribe anything--medication or otherwise. Although I have inquired about all that you mentioned, the neurologist works in a small town and is slow to respond to email or requests for an appointment. I researched routines for dementia patients for a number of weeks before posting my question. Routines seem to recommended for dementia patients, but I could not find specific examples of how to address the circumstances that my dad is dealing with. Do you think that any of my ideas would work? A note? A timer?
I'd keep in mind that supervising s a person who has dementia is very challenging. It's a full time job and truly occupies your time around the clock. One reason is that the person you are reminding, isn't capable to remember what you just said. So, it seems like you are constantly repeating yourself, which you are, because, there is no other option. That is a very stressful and exhausting thing to do.
But, the person with dementia often resists being directed or reminded, so, there is often a battle of the wills. I think that often the caregiver is lucky to just get through a day. Keeping to a schedule may be good for a facility, because they have a staff of people to keep things on track, but, if it's just one person, who is doing all the cooking, cleaning, bathing the dementia patient, helping dress, shopping, paying bills, transporting, etc. It's a huge job.
With my LO, I struggled just to get her to do the basics, like bathing before going to the doctor, getting out of bed by noon or just eating an egg for breakfast. I hope others will have more tips for how to keep things on schedule. I know that having them get up in the morning, so they are sleepy at bedtime is helpful. That way you can get your rest too, if they sleep at night, that is.
Sunny Girl1. Thank you. Yes, you have described my dad's situation perfectly. Do you think a timer and a note regarding what she's doing would help? Or should he just supervise her as she gets dressed?
AgingInfo, could you clarify something? You wrote that your father is paralyzed, and I wasn't sure if you meant physically or emotionally (i.e., kind of an exasperation mode interfering with his ability to act). (I'm not trying to challenge your desire for privacy).
What I was thinking was that your mother is (a) a free spirit, probably has an artistic temperament, and probably doesn't like commitments, and that (b) she's really controlling all the activities in which she and your father engage. (I understand that perfectly b/c I absolutely hate commitments as well.)
With free spirits, I find that just giving them room to live the way they want to and not create schedules is easier to meet their needs. If your father isn't physically paralyzed and can drive himself, he might just decide to tell her what he plans to do and leave if she's not ready.
But that assumes she's able to care for herself while he's gone. If she can, your father might just go out to eat with friends, or make friends through a Senior Center and begin to build enough distance that he can satisfy himself w/o having to rely on your mom.
I don't suggest this to be cruel, but rather to allow him to break free of being reliant on her.
Garden Artist. Hi. Yes, he is physically paralyzed from the knees down, but he does still drive. He also walks by propelling himself forward from his hips, but he can not stand still, or he will tip over. It is for that reason that he prefers not to cook. I agree that he probably needs a break from her, but he is afraid to leave her home alone after catching her trying to heat up soup in a ceramic mug on the stove. I do appreciate your suggestions though, and I will try to help him think of instances when he can go out briefly without her. And yes, my mom is and has always been as you described above. Unfortunately, my dad was a military man; so there is quite a clash of wills going on.
First, you need to have Mom evaluated. Its more important as we age that bloodwork becomes routine. There can be all kinds of reasons why Mom is acting the way she is. It could be a deficiency, hormones, thyroid. You don't say how old Mom is, could be Menopause. She could be showing signs of diabetes, this can cause Dementia type symptoms as can a UTI.
You can't say Dementia until she has been tested by a Neurologist.
Good Luck and come back and tell us how it works out.
JoAnn29. I realize my reply on BarbBrooklyn's feed was long; so you may not have noticed that I said the doctors do not know what is wrong with her. She is under the care of an internist, a neurologist, and an endocrinologist. She has had blood work 10 times over, cat scans, MRIs, EEGs. Her blood sugar is under control. She is well past menopause at age 75. Infectious disease has been ruled out, as have vitamin deficiencies. The neurologist has interviewed my mom, my dad, and myself and has been issuing tests for my mom since July. The neurologist still has not given us a diagnosis, but lately, has hinted at the possibility of dementia. Thus the reason why I sought out an answer through this website.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
ROUTINE always, not schedule. And you certainly do not remind the person with dementia "hey it is 10:00, we were supposed to have breakfast at 8, we are already off schedule."
If you will provide some specific things you are concerned with maybe we can all try to respond in a way that would be more helpful. Caring for a loved one initially is completely overwhelming, there is plenty to learn to try to provide the best care possible while making the stress of it as manageable for ourselves as possible.
Filling oit your profile and letting us know who you are caring for and what their issues are helps us give good answers as well.
In other words, help us to help you.
You asked about establishing a schedule for a dementia patient. I think in general, you keep the schedule in your head and use "now it's time to..." locution to cue them for an activity.
Does giving them a 5 minute heads up help or create resistence? Are they resistant to EVERY announced activity?
Have you tried giving choices, i.e., "would you like to get dressed or brush your teeth?" "Woukd you like to wash your hands or your face?"
Wishing you all the best of luck in such a tough situation.
But, the person with dementia often resists being directed or reminded, so, there is often a battle of the wills. I think that often the caregiver is lucky to just get through a day. Keeping to a schedule may be good for a facility, because they have a staff of people to keep things on track, but, if it's just one person, who is doing all the cooking, cleaning, bathing the dementia patient, helping dress, shopping, paying bills, transporting, etc. It's a huge job.
With my LO, I struggled just to get her to do the basics, like bathing before going to the doctor, getting out of bed by noon or just eating an egg for breakfast. I hope others will have more tips for how to keep things on schedule. I know that having them get up in the morning, so they are sleepy at bedtime is helpful. That way you can get your rest too, if they sleep at night, that is.
What I was thinking was that your mother is (a) a free spirit, probably has an artistic temperament, and probably doesn't like commitments, and that (b) she's really controlling all the activities in which she and your father engage. (I understand that perfectly b/c I absolutely hate commitments as well.)
With free spirits, I find that just giving them room to live the way they want to and not create schedules is easier to meet their needs. If your father isn't physically paralyzed and can drive himself, he might just decide to tell her what he plans to do and leave if she's not ready.
But that assumes she's able to care for herself while he's gone. If she can, your father might just go out to eat with friends, or make friends through a Senior Center and begin to build enough distance that he can satisfy himself w/o having to rely on your mom.
I don't suggest this to be cruel, but rather to allow him to break free of being reliant on her.
You can't say Dementia until she has been tested by a Neurologist.
Good Luck and come back and tell us how it works out.