My Mom has that ability to "turn on a switch" when she is around friends. How can I encourage her to flip that switch on around us?

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Like others who have posted about this condition, my mom (who is in the early stage of dementia) can appear to be almost "dementia free" when she is around her good friends-either when they come to visit or when she goes out to eat with them. She has always enjoyed spending time with friends and I'm grateful that she still does. The thing is, her behavior is so "night and day" from how she acts with me and my family (we are her caregivers) compared to being with her friends, that it's frustrating she can do basic tasks on her own when I'm not around, but when I am she cannot do anything without being prompted, several times usually. When I suggest that she can try to do something, she says that I'm out of my mind if I think she can do "such and such" (for instance, hang up the phone). Another aspect is that her friends will say things like "Oh you should really take your mom on a vacation" or "Your mom told me that she never gets to go for walks" which I would like to reply "You have no idea how she is when you leave!" Getting her to take a walk is always iffy, going on a vacation would cause her so much apprehension that we'd look forward to coming home to recuperate; even motivating her to get out of bed to get ready to go somewhere with us or with her friends is usually a battle as well...her well meaning friends have no idea of the reality.


It's been about a year since we've moved in to help her, and I try to focus on the good things: mom can still live in her home, my loving husband was not only willing to make the move but actually initiated it, the move has helped my MIL to move into our house with her cousin for companionship, I can help my mom with things she needs done for her (cooking, cleaning, laundry, verbal cues for shower/clothes etc., exercising and walking with her, finding things she loses-I tried to have her help a couple of times and it wasn't worth her frustration)- and I can still spend quality time with my daughter. Looking at the big picture and comparing this to the problems others have posted about I see I'm being short-sighted. I would still, however, greatly appreciate any advice or input. Thanks in advance.

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Chuff, every caregiver has different challenges, so please don't negatively compare yourself to what you may think is perfection in what others do.

No one can know your whole life. What you've described sounds nearly overwhelming and you are doing a terrific job. As Pam said, you must watch for burnout. You can still take care of your mom when you have help, even if that help comes in the forum of assisted living or a memory unity.

True, other than being on call for emergencies (which, in itself, can be stressful) you will not be providing 24 hour care. That doesn't mean that you can't spend as much time with her as you can (or want to).

Caregivers shouldn't judge one another and most offer support and advice. We caregivers do the best that we can with what we have. You have multiple people to concern yourself with, even though your husband seems like a dream when it comes to his family.
Do what you realistically can, but don't allow your own health to do down. That won't help your husband, your mom or anyone else. Most of all lose the guilt if/when you must make other arrangements for your mom.
Take care,
Carol
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Look up "showtiming" which is the ability of a dementia patient to put their best face forward for visitors and doctor visits. Also look up "sundowning" for the nasty behaviors you experience in the evenings.
Then look up "caregiver burnout", because it is coming at you if you are attempting to take care of all these people without time for yourself.
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Pam-thank you for sharing your insightful remarks. I will look up "showtiming" as that certainly fits, and I'm familiar with the symptoms of sundowning. I didn't mean to imply that I'm taking care of my MIL and her cousin as well-they fall within my husband's realm as they are both handicapped and are living in our "real" home. My husband truly is one of those very special souls who believes family takes care of family. My family and I moved in to my mom's house so I could be her primary caregiver. This was not the first "solution" that we have tried. At first, mom had a wonderful caregiver come to her home during the day when I was at work, but mom didn't trust her or even like her. She made a list of everything that was "missing" and treated her horribly. We then tried a different caregiver, and again a wonderful person mom didn't want in her house. The second day, mom ran to the neighbors terrified and told them she was being locked out of her house by the caregiver. Next, mom tried an assisted living complex (although she didn't want to) which is one of the nicer ones in the area as well as close by. Unfortunately, mom's paranoia resulted in that not working out-she wouldn't leave her room for meals or activities unless I was there etc. After a week, the staff asked us to tour the memory unit. It was so dismal and depressing that I couldn't place mom there, particularly since she is still very much aware of her surroundings. We then checked out 2 other memory units that were better, in regards to lighting and cheerful environments, but comparing mom to the other residents who were out in the commons area, she isn't ready for that step and would likely go down fast going in "too soon". We then decided to care for her ourselves in her home. I really thought she be more happy about living in her home, continuing to see friends/family, having her needs met, but she sadly moves from sadness to fretting to feeling apprehensive. I really hate this disease, and it's something that will soon take hold of many baby boomers and by the numbers.

You're so right to suggest that caregiver burnout is coming at some point sense I have little time for much else besides mom. I don't think I'll be able to handle mom's dementia long term. I am amazed and humbled by so many on here with the way they handle so many tough issues, so lovingly and calmly; unfortunately this ability seems beyond my nature as I pray for strength daily.

Urinary incontinence is certainly challenging. Mom can't tell when her bladder is full and is unable to go to the restroom on her own. It seems to be either related to the grey matter around the periaqueductal region in her brain not working or some type of spinal nerve damage (I tend to research about this beast late at late). A timed schedule is usually a disaster resulting in total urinary retention, so she usually goes in her Depends during the day and night, on occasion taking off the Depends at night and wetting the bed. She sees her geriatric neurologist (who specializes in memory disorders) this coming Friday, and I'm hoping he'll have suggestions for some of these issues. The med to tighten her bladder and relax the opening was completely ineffective (prescribed by her GYN after urodynamic testing). I'll have to watch how I word my questions about it to the doc, since mom does not like to talk about her incontinence.

Thanks so much for responding. Sorry I've come back with a lengthy reply. I read your posts frequently, and really appreciate you taking the time to help others. This board has been so helpful.
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chuf111 - Have you ever read a blog and thought perhaps you got up in the middle of the night and wrote it yourself? that's how I felt about yours, : ). We experienced nearly the same situation with my husband who was diagnosed in his mid 40's with dementia after lung cancer, brain cancer and several strokes. Eventually I had to be firm with Bob since living at home became dangerous for all of us (that's a story in itself). When we finally found the right place for Bob we built his "man cave" with all his favorite things, including a life size poster of his favorite Buffalo Bill football player. Everything was for and about "him". He didn't come out of his room at first either, but I would visit at meal time and join him in the dining room till he made friends. There was nothing easy about any plan that we made. I tried it all and ran myself ragged trying find the perfect situation, one that I could live with guilt-free. Although I don't think a caregiver ever stops feeling guilty about the decisions we make. In any case, I know the frustration you are expressing. Be careful, the burn out is real and can be dangerous for you. I'd like to send you a copy of Personal Positioning for the Caregiver. It won't solve the problem, but it offers suggestions on how to overcome burn out and includes enough humor that it may lift your spirits if only for a short time. Let me know if you want me to send you a copy - my gift. Hang in there!
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Hi guys, I have found the most awsome book in my library. It is called 36 Hour Day. It deals with all the problems we talk about. If I didn't know better, I swear I think I wrote it. This books lets you what is coming and how to deal with each problem as it occurs. Get this book all you caregivers. Wonderful
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Allow me to clue you in, rfox 1960. I have made a huge, important discovery, and I would like to share it with you! I have discovered, much to my chagrin and thanks to my daughter who is sharp as a tack, that very often dementia patients LOVE attention. They know enough to love attention and they thrive on getting it and they'll get it any which way they can. I was beside myself trying to get my "feeble" husband to bed at night (he would take forever, one tiny step in front of the other until I was ready to scream), and it was my daughter who finally told me "Leave him alone. Go about your business and let him get himself to bed!" And she was right! I can't believe I have spent so many months tiring myself out, cajoling him, begging him just like I would a toddler. Then my daughter moved into our upstairs apartment with her husband, and I was saved by the bell!

If I try to take his arm (I'm learning not to now), he acts so feeble and helpless, but yesterday my daughter asked him if he'd like for her to take him for a ride, and he broke all track records getting to the car. I was so mad!!!

They know more than we think they do. I am not saying that they don't have problems with their dementia, but they can do more and know more than we think, and very often WE are the ones who place all the limitations on them.

We need to back off and let them do their thing. Another example, my husband often gets up at night, usually somewhere between 3:00 and 4:00 and wanders around and fiddles with paper and pen and moves stuff around and opens drawers, etc. I used to jump out of bed and cajole him into getting back into bed, and he made an international crisis out of it everytime I did this. Then my daughter said to me, "So what's the big deal? You don't have to get up! Stay in bed! Let him do his thing. So what if he sits at the table and scribbles on paper or opens drawers and takes things out to look at them? So what?"

So that's what I do now. Eventually he gets tired, crawls back into bed and sleeps for several hours more. He leaves lights on but so what?

Gosh, but I have one smart daughter! :)
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I appreciate the suggestion to look up 'showtiming' as well. I have witnessed a mid-sentence 180° turnaround. From the nasty to the nice, in front of the person she only wanted to see the nice. It is funny now.
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Just want to share that my mom did the same thing. She was like that with her handsome smart tall doctors! Which made me a little crazy because she should show up for an appointment and flirt with them rather than tell them her symptoms. One day she even told me NOT to speak to them so she could flirt. She was so together when she was with certain people, but then when she was home alone with me, or even in the car on the way, she would deteriorate. When I asked her what was happening, she would say... I know, I don't know why I can't do X with you, but I can in the doctor's office.

Just wanted to share. We were very thankful for the good times and tried to put her in as many of those situations as possible. For example her exercise class at the library made her happy that way. Up until the end, it was great for us to know where she could "pull it together", because we knew that would be a bright spot.

Sadly with all of our parents, I hate to say this, but one day they will be leaving us. In my case, as it seems in your case, we tried to make it the best transition possible. It was a lot of work, but well worth it for the good memories in the many years that followed their passing. Wishing you all the best in this challenging but rewarding Care Giving life.
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Just sharing but my MIL was great at Showtiming as well! One suggestion, when you have a doctor's appointment and need to show the doctor some of her problems and help him see her changes, write a note with her current symptoms, as well as a list of things she should remember if she had no cognitive issues. Good examples would be, what she ate for dinner the night before or for breakfast, places she went the previous week or people who she visited with. You will be amazed at her answers! They sound so convincing, that anyone listening would think she was normal. Recognizing it for what it is does help you deal with it a bit easier. As far as her frustration with you or her caregivers, it does subside with time as she has accepts the fact she needs help and YOU are there to help her. If she has a friend close by that does not have dementia, you might want to enlist their aid in taking her for walks. Or stopping by a day or two to play cards and just socialize. This will also help in getting them to take showers, change their clothes. etc. so you don't sound like a harping mother.... You could even offer the friend a bit of compensation without her knowledge. Or barter some assistance to them on your part. This is the time you have to think outside the box for some creative distractions for her.
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My mom is great around friends most of the time and with family she don't see often but with me can be nothing short of a witch. My birthday is tomorrow and since she always starts acting up on Friday and throughout the weekend and better Monday I told my kids to not do anything. Anything that takes the attention away from her she will only try and ruin it for everyone. She does put on the show when needed, and sundowning for sure but today felt the need to tell her sitter I was not to bright in school and couldn't spell cat. Of course the sitter not knowing what to say just looked at me. I said honey I have always been the youngest and the dumbest yet I ran her company for seventeen years and now a very large property in social services for fourteen plus. Sometimes I think the dementia just allows what they really think about you come out without the filter. I tell myself that or I would think of her as Joan Crawford and I would like to think better of her when she is gone. I agree 100% that caregivers should not judge one another. We are all in the same boat but on different waters. This should be for support, venting and advice not judgement.
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