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CARENOTES | Past Carenotes | Let's Talk

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 07/03/12

What concerns me most is when my Alzheimer parent gets "homesick" every single day and then spends most of the rest of the evening crying. She wants to go home, but she can't tell me where that is. She lives with us and has for 11 years. I can't stand the constant crying, and I can't find what this means in Alzheimer's language and so I don't know how to stop it or redirect it. Once she gets there, there's no way to stop her.

Pati

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Name: Randall Knowles
Location: Great Falls, MT
Date: 09/24/2012
Time: 08:29 AM

Comments

Make sure that her room is filled with photos and other memorbilia from her home. Try to remember what her evening routine was? Fill your home with her decorative pillows and other memorbilia. The other day I was cleaning out my father's garage of wood and metal scraps; Mom said:" don't throw all that clutter away it reminds me of your father." Something as simple as clutter could be a trigger. Dementia patients also like routine; keep a daily rountine so she can look at a clock and anticipate what is happening next. There is a reason that "facilities" write the daily activities on a board. Taking care of mom comes with all the responsibilities of a new baby. As a new baby sets the schedule and pace of the household so does mom. Mom may have been more flexible 11 years ago but as the dementia progresses so does her evolution back to new born status. Evening routine of Jeopardy and Wheel of Fortune may work and she may not want to watch alone. Keep the Dr. in the loop there may ber some treatable depression.


Name:
Location:
Date: 09/23/2012
Time: 09:25 PM

Comments

Patti, I agree with most of the others. When I was taking care of my Mom, she had these same symptons occassionally. Questioning here seemed to make things worse, so I went with the tactic that "we're just having a little visit here, then we'll go back home." It did help to get her in the car, take a drive and come back saying "we're finally back home." Just the driving diversion seemed to calm her; she didn't feel so closed in. Often, she would go to the locked back door, peer thru the window and say "That's my car", and try to get out. So, again, it seemed better to agree with her, go out and get in the car and drive around for a while. We had always promised our parents they would NEVER be sent to a nursing home and that we would take care of them at home. Thank God we were able to do that. My Mom had a little stroke once, however, and needed physical therapy for walking and talking. So, for a very short time, we did have to place her in a nursing home for the therapy. I'll always remember her sweet little comment the first night she was there...."How did we get to this little hideaway?" It was so funny. I just said we were on a trip and this just looked like a good place to stay for the night. That satisfied her. I would always stay until she fell asleep and return early in the morning to assist her with breakfast. Fortunately, we only had her there for a short time till she could walk and talk again. Even at home, she would sometimes get angry about something. I learned it was best to agree with her and not argue or try to explain -- it was just too confusing for her and would make her frustrated if she couldn't understand. It worked out so much better if I could find a way to change the subject to something pleasant she remembered about. The hummingbirds she loved so much and the flower garden I planted for her. It sometimes was very difficult, but distracting her to another topic always seemed to work. Despite everything, I cherish the memories of taking care of my sweet Mother. It was a hearbreaking experience for sure. Just try to take care of yourself also. You'll never regret taking care of your Mom and bless you for everything you do for her. I can't say enough, but it did help me to keep up a frequent email status report to our relatives. Their encouragement really helped me thru and writing about it was carthtic for me. So, do at least start a journal. That's something you'll always be able to refer to and remember how much you helped your Mom. God Bless you and I'll keep you in my prayers. Now that my Mom and Dad are both gone, it is so sad, but I'm happy they are together again in God's ecstacy. I'm now confronted with a 56-year old best friend that's been diagnosed with ALS. It, too, is simply horror. I am plannning to move near her in another state to help her husband take care of her, so pray for me also, please. (Teresa)


Name: Debbie
Location: Kentucy
Date: 09/23/2012
Time: 08:38 PM

Comments

I moved my parents from a home they had lived in for 45 years and did a house for them so they would only be 5 minutes from my family. Both my parents had Alzheimers and my mother's Alzheimers was further along than my father. O tried to move as much of her things as possible but the move was very confuseing for her, each evening she would start saying come on George who was my father we need to go home, she would get her purse and get mad at my father and her caregiver when they would tell her she was home and they moved so she could be closer to me her daughter, that didn't change her thought process, they would call me and I would come over I would then take her fora ride if it was still nice out and tell her in a calm voice that I was so glad they had moved so she wS only 5 minutes from me I would hold her hand and keep assuring her how much I loved her and I wS able to see her every day since she had moved, then I would take her home and tell her as we pulled in the driveway this was her new home and how pretty it was and take her inside and show her favorite pieces then tell her this was her's and we brought it with us for her new home, that would take care of things for awhile. My mother began to get worse then the caregivers would call because she was getting really upset, I can remember coming into her house and she would have a angry look on her face I would give her a kiss sit beside her hold her hand and tell her how much I loved her pull out photo albums of my brothers and I when we were little and just telling her stories about different pictures she would drop going home and lay her head on my shoulder and smile, we would get her ready for bed after 15 or 20 mins. Both my parents have passed in the last year I did this for 6 1/2 years and it was not easy at times but they were both so dependent on me and my husband like your children and we couldn't have done it without there caregivers, you must be good to yourself and give time to your own family , I have a very calm feeling of no regrets take care of yourself too!


Name:
Location:
Date: 09/23/2012
Time: 05:39 PM

Comments

Patti, whether they are living in their own home or living elsewhere, they still want to go home. My husband and I had lived in our home over 25 years, and every night, after dinner, he would say it was time to go home, get up and get his coat, and head for the door. I think they are living in the past where their "home" was a happy, secure place, and they don't feel that way in the present. You can redirect by saying it's not time yet, we'll go later, or as suggesed, take them for a ride, and often that will pacify them. It is something you have to live with, and "that too, will pass."


Name:
Location:
Date: 09/23/2012
Time: 11:32 AM

Comments

I am an experienced caregiver because I worked \for The Childrens and Family Services in West Palm Beach and I took care of the first Cousin of the Gershwin Brothers the Music Directors of the many shows on Broadway. This was a few years ago but I went on to continue doing the same thing.


Name:
Location:
Date: 09/23/2012
Time: 08:55 AM

Comments

I agree with Charlotte also. When my mother asks to go home, it is typically the home she grew up in. We don't ask where she means, we just say we are going "tomorrow" and say we need to get ready. She does say she misses her mom and wants to see her. I assure her we will go together. That really helps calm her! She readily moves on to another topic especially if we initiate it. Sometimes the less talk the better. Good luck!


Name:
Location:
Date: 09/23/2012
Time: 07:10 AM

Comments

My husband also says that. At first I thought he wanted to be in his early childhood home, but gradually, I realized that he said that wish when he was uncomfortable, stressed, etc. So, now I make sure we change directions away from anything that might be giving him anxiety. It isn't easy, but so often my husband isn't speaking the words that will get to his concerns and we have to 'read' his mind. Bless you for caring for your mom all those 11 years.


Name: Thali Soffair Reichenberg
Location: Israel
Date: 09/23/2012
Time: 06:16 AM

Comments

Yes, and what shows up for me most is that what alzheimer patients long most for by longing for home, might be their "inner home" : they seem to experience or know they are "lost" from who they were. That's what so painful for me about it. Any discussion, or actions undertaken that redirects the patients from the emotional turbulance that works, is great. Both patients and caregivers are impacted by the result. THe caregivers can use the impact as a clue whether or not in the desired direction.if the patient calms down, the caregiver may end up believing that's right, however the next time it might work again or not. The dynamic of the disease, the patient and the circumstances and probably a few other factors take place simultaneously. I strongly believe, as painful as it is, to admit, that we, caregivers, are doing more than our best, and that there are and will be times, when we are'nt able to help or create the desired outcome in the situation. This is very important to bear in mind for us caregivers. with love Thalia


Name: Somone who cares
Location: Georgia
Date: 07/04/2012
Time: 06:34 AM

Comments

Hi Patti, I have nothing really to add to all the very informative comments below other than to say to you to take them all and formulate your plan. Charlotte has some very solid informaiton for you, you will also note possibly some excalation of this on cloudy or raining days, as we do in Assisted Living. Engaing your mother in talking about home etc as other suggested are all good. The thing for you to do is know that you can handle this and to do what you have to in order not to get frustrated. Either keeping a journal or if you have to get some tablets and do some cathatic writing about how you feel about what happens and write until you can't write anymore and than tear it into lttle pieces. Preferrably do this just prior to bedtime, you should feel refreshed in the morning. Like I said all the prior suggestions are great, you need to believe in yourself and formulate the plan and take care of you. Love and light for your travels.


Name: Janice
Location: Wilmington, DE
Date: 07/03/2012
Time: 01:09 PM

Comments

It's interesting that some Alzheimer's individuals will revert to the time when they were around 14 years old. When they say they want "to go home," they mean their childhood home. Sometimes, what they are upset about is missing their parents. It's important to validate their feelings. Ask them to tell you more about their home and to describe it. If they talk about their mother or father, validate that they must have loved them very much. Rather than try to explain to them that where they are now is their home, try to go with them in their place and time to the home that they are missing in the moment.


Name: Judy H., RN
Location: Florida
Date: 07/03/2012
Time: 09:22 AM

Comments

Pati, I've found with my patient's that begin asking to go home is to not question too much. The more you ask "where, etc" the more they can become upset since they can't "remember" the answer. Instead, we will say, you are here visiting until (Saturday,etc.) and then I will be taking you home. It seems to calm them down that you are acknowledging their wishes without questioning too much. Be sure not to say things like "What do you mean? You've lived here with me for 11 years..this is your home." In their mind, they have their own home and this isn't it. It seems like saying they are "visiting you for a few days and then will go home" allows them to relax. And yes, you will probably have to do this everyday. However, getting the reassurance that they will be "going home" can help to calm them down. It is very important to say this AS SOON AS your parent begins talking about going home. Even if you have to repeat it several times during the evening, it is much better than having the situation worsen with the crying. It is a white lie in that while not being true, it helps the situation which is the most important thing. I hope this might help you. Good luck and God Bless you.


Name: Teresa F
Location: Severn, MD
Date: 07/03/2012
Time: 08:58 AM

Comments

The first thing you should do is get your parent a complete physical. Many medical problems can result in depression in the elderly. Second, talk to her physician about medication. Medications can improve her (and your)quality of life.


Name: Mimi
Location: New Jersey
Date: 07/03/2012
Time: 08:24 AM

Comments

I had a similar problem with my husband, but instead of the crying, he would get nasty and try to get out of the house. He kept asking when we were going home and would "pack" a bag with nothing important in it. I finally learned to just tell him that we would be going back home later or tomorrow. He would also ask where his parents were or if they were coming for a visit. I would tell him that they were coming over later or maybe they were busy and would visit the following day. That type of answer seemed to make him comfortable and he would stop talking about that subject for a short while. He ended up with way too much medicines and in different facilities. He just passed away in January and now I'm dealing with a lot of issues. Try to resolve your issues now because it will help you later. I tried and it did help quite a bit. Try to redirect your mom when she starts crying. Tell her you will take her home "later" or tomorrow. She'll forget soon enough. When she cries, you might just want to cry with her to relieve some of your tension. Don't forget to hug your mom. My mom passed away 4 years ago this month. She spent 3 days saying goodbye to us and her mind was sharp as anything. I miss her every day and treasure all the times I hugged her and cried with her. Now I miss my husband every day. Go into that space with her, even if you don't know where or what that space is. It'll help you as much as it helps her. Good luck.


Name: Pamela
Location: Manitoba
Date: 07/03/2012
Time: 07:32 AM

Comments

My 92 year old mother lives with me in my home and has for the past year. She has serious memory loss and cognitive change. Mom had a long stretch of "unexplained" crying and sadness this past winter. Lots of it was about "home" and her parents. It is better now, but it still happens. We had a geriatric mental health assessment done so that we could be sure that Mom wasn't suffering from some sort of depression. We also made sure that we were ensuring all the usual things such as regular schedule, good nutrition, solid sleep routines (although her sleep patterns have continually changed from night to night), proper lighting, etc. When she got into a crying spell, I would do with her as I would do with anyone who is crying - some active listening, honouring her feelings. Then I would gradually try to change the subject: get her to go to the kitchen for a cup of tea, or go on an outing, or my sister would call for her regular telephone visit. When all of that didn't work, which is where it sounds like you are at, Pati, I discovered that there are times when Mom just needs to cry a little. If she can simply have a cry and get it out of her system, she eventually gets herself sorted around. From what the geriatric mental health team said, I understand that some of what is going on is due to brain cells that are doing things that they wouldn't normally do, but some of it may be normal grieving. Mom has had a lot of things in her life that she never had a chance to properly grieve and the release of dementia may actually be allowing her to "process" some of that. Tears are Mother Nature's healing balm and the natural response to grief. On top of that, she has been needing to grieve her loss of function. She has been pretty upset when her formerly prodigious memory has failed her. It must be hard to face dependency on others when you have been successfully independent for so many years. It must be hard to take when you realize that you are babbling and others have no clue what you are saying. For many of us, the loss of autonomy is likely one of the most significant grief experiences we will ever have, and for a women of Mom’s generation, for whom autonomy was a hard-won prize it may even be doubly hard to let go of. Not everything that goes on for a person who is experiencing symptoms of dementia is about the dementia. While it is true that some experiences are purely about dementia, it can also be helpful if we can see behaviours the same way as we would for anyone else and respond accordingly. So whether Mom was actually going through a normal grieving process, or whether her brain cells were doing unusual things, there were times when she just needed to cry. She is not doing that these days. It may all return, as things seem to come and go in phases. Another point that I noted in your original question, Pati, was that you said you can't stand it. I think that those of us who care for our own parents have an interesting set of circumstances to deal with. Just because our parent is no longer functioning the way they did when they were raising us, or when, as adults, we were independent of each other, doesn't change the fact that they are still our parents. We still have a dynamic that originated when we were born and has been carved out over all the years to become what it is today. When you used the phrase, "I can't stand . . .", it made me think about my own feelings any time when things are not perfectly right for my Mom. I am fiercely protective of her; I will work 'till the cows come home to find whatever it is that she needs; I am devoted to her care. And all of that came from a childhood in which we learned to protect and care for her, not because she was particularly fragile, just because that was part of the family dynamic. She drives me loopy sometimes with her "ways", some of which have always been there, some of which are due to this new phase in her life. But no matter what, I will stick up for my Mom. Your "I can't stand . . ." phrase reminded me of all that. It seems to me that we can do everything we can for our dependent parents, and then we have to back off and let them have their "stuff", whatever it is. Whether it is related to dementia or whether it is their normal psycho-emotional stuff. That said, I think that it is perfectly fine to deal with the crying episodes by leaving the room, finding someone else to be present for them if that is needed, or leaving the elder alone with the tears. We've all cried alone and it isn't the end of the world. As a care-giver, all we can do is our best.


Name: Edith
Location: Illinois
Date: 07/03/2012
Time: 06:29 AM

Comments

Every two or three days, we have the same problems. I say "let's take a ride and get home." We get in the car and drive around and then return home, with Himself directing me into the driveway. All is well then - for a while. So far it works.


Name: Charlotte Rosenberg of Monarcares.com
Location: Wilmington, NC
Date: 07/03/2012
Time: 06:28 AM

Comments

Dear Pati, It sounds as if your mother may be sundowning in the afternoon. Sundowner’s Syndrome or “sundowning, is a state of confusion experienced by Alzheimer’s and dementia patients, typically in the late afternoon or early evening. If you have never witnessed it before and even if you have, it can be very scary looking and upsetting. “sundowning” symptoms vary from person to person but some of the common ones are: • increased confusion, agitation or restlessness; • violent or verbal outbursts; • sadness or melancholy; • an overwhelming need to “go home”; • shadowing their caregiver. If you suspect that your loved one may be “sundowning”, contact their healthcare provider first in order to rule out a medical cause for the behavior, such as a urinary tract infection. Frustratingly, no one can say for sure what the exact causes of “sundowning” are. However, you may be able to lessen the frequency and level of these episodes by: • limit your loved one’s intake of sweets and caffeine to the early part of the day; • maintain a regular schedule for your loved one, i.e., try to have them rise, eat and bathe at the same time everyday ; • plan daily activities in the early part of the day for them . Many dementia patients desire to sleep during the day and stay up at night. In other words, their “internal clock” does not function properly which could be a factor in bringing on “sundowning” episode. By organizing activities in the early part of the day, your loved one will be exposed to daylight, which should discourage excessive napping as well as not over tire them later in the day; • do not let your loved one take long naps in the day. A twenty to thirty minute nap will revive them just as it would you; • serve dinner early in the evening and only give a light snack prior to bed; • use lights which mimic the bright light of daylight in the afternoon; • use a reassuring voice when speaking with your loved one and assure them that everyone is safe and that everyone and everything is fine; Acknowledge how the episode of “sundowning” makes you feel. You have a right to feel scared and upset by these outbursts but remember, your mother cannot prevent these outbursts from happening. She cannot help the way she feels or control the thoughts in her head, so do not argue with her. Arguing will only further agitate her, which will make the episode worse and make you feel terrible.


Name: tj
Location: wv
Date: 07/03/2012
Time: 06:04 AM

Comments

Patti, when she cries for her home, talk to her, ask: you really miss your home don't you, tell me about your home, what do you like most about your home, how many rooms, what colors etc. This may be enough to redirect her and allow her to stop crying. It is difficult for the caregiver, I've even stated to a family member that we'll go home first thing in the morning which is enough to redirect them. I wish you luck, I hope this helps.


Name:
Location:
Date: 07/03/2012
Time: 06:02 AM

Comments

Have you tried using familiar music to redirect? Many times that can help. It's such a simple thing that we tend to forget about using it.


 







 

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