Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
I am a new caregiver for my wife who has dementia. I am finding this a very difficult task. She wants to be on the go all day and does not want to stay at home for five minutes at a time. She does not calm down until we eat dinner around 5PM. How do I make her stay at home? I have dead bolts on all doors but she constantly fights me to get out and I finally give in. Any and all suggestions appreciated.
I'm very sorry you are living with this. It must be very painful to watch your spouse this way. My father had a lot of difficulty accepting my mother's condition. So, I can understand your feelings.
There are medications that can calm your wife, too. Glad to see you will ask the doctor to prescribe something.
It's good that you have deadbolts on the doors because as sure as I'm sitting her, she will try to get out.
Prepare yourself for some very unexpected events. I suggest that you either have her name and address on a label inside her clothing or, if she's willing to wear one, a bracelet with her identification. My mother got out once and was brought back home by a neighbor. I wasn't there at the time and my father inadvertently left the door unlocked. Fortunate for us, the neighbor recognized her and brought her home. After that, I wrote her name and address inside all her shirts (on the label).
Sometimes they need a distraction. I bought my mother a baby doll. She spent hours taking care of that doll. I also bought a couple of those jigsaw puzzles for toddlers. One with the alphabet and one with numbers. She would get bored with them quicker than she did with the baby doll.
She was always looking for her purse, too. There was nothing in it but occasionally I would find a pair of socks or a spoon inside. As I got more familiar with her condition and realized she would move items around, the first place I would look was in her purse. I don't know how she managed but I found my father's dentures in there one day. He'd been looking for them most of the morning and afternoon. I learned that if something came up missing, check Mom's purse. It was then that I realized she would get up in the middle of the night and roam around. That was about the time it became necessary to have someone, round the clock, watching her.
She had vascular dementia and would experience sundowners in the evening. She would announce it was time to go home now. I couldn't make her realize that she was home so I'd put her in the car and drive down a couple of blocks and then back home. I know it sounds crazy but it worked. She was like this most every night so it became a ritual. About the time we'd get back home, it was time for her to get ready for bed.
I don't need to tell you because you're already aware that this life is nothing like you expected. I wish you all the best. And, please do reach out to agencies that offer respite care for you or possibly consider a daycare center where you can take her for a few hours a week. It's so important for you to maintain your health and well-being. As a former caregiver, I can attest that the caregiver's health will decline faster than the person they care caring for, if you let it. Just try to find some things that will occupy her but just make sure it's not something that could hurt her.
Quote:
Originally Posted by Padgett2
Reality. Ah, Yes! The Magic word. It's time to learn that her "Reality" is a lot different from yours. Her mind does not process the information about her surroundings or time the way that you expect.
As many caregivers have learned, the best thing to do is learn to Fib. Lie and pretend. Go along with what she seems to be thinking and then try to figure out what to say that will please her.
It's her "Reality." It's the only one she knows. If you try to convince her that she's wrong, (or try to bring her back to reality) she will think that you are just lying to her. It confuses her as she cannot figure out why you would lie to her.
This is excellent and it's exactly what I did with my mother. Once I learned her reality was gone, I didn't try to pull her back into it. When she asked questions, I would respond with "Gee, I don't know. What do you think, Mom?" She would go on and tell me what she was thinking and I would just agree with it. It broke my heart to do it but it was the only way I could cope. There is nothing more difficult that to watch a loved one slipping away from you. I've heard it said that it's easier to be a care giver to a stranger than a family member and I believe that's true. For the last six years of my mother's life, I was just that "nice lady who stopped in to visit." As heartbreaking as it was to say goodbye to her, there was a sense of relief that it was finally over. I hope that doesn't come across as callous because I loved my mother very much. It's just that it was a very long journey and it took an incredible toll on my family.
Scotty011, that's such a terrible problem to have. Most states/counties/municipalities have some form of a Council on Aging and they do offer lots of practical help if you haven't gone that route yet. Many of the Alzheimer's day care facilities, designed to give caregivers a break of several hours most week days, have lots of activities suitable to hyperactive patients.
The one in my area shares a building with a children's day care center and the agency that runs it gets the kids and the "grandparents" together for joint activities. The adults get lots of time helping the children with games and crafts that they would never do on their own, but it's good for their brains. And a loving child who doesn't judge can give anyone a lift.
Just a thought: I don't know how you and your wife feel about pets, but they can be a source of activity/comfort for people with cognition issues. If you don't have the strength for a pet, many ASPCAs and AKC chapters can arrange for a therapy dog to "visit" your home to play with someone who would enjoy the attention. I know there have been studies showing that dogs can calm some people with distress issues and many dogs are extraordinarily empathetic with human who are "hurt" in their uncanny perception. Those are the ones the experts train for visitations. American Kennel Club - AKC Therapy Dog Program Therapy Dogs International Psychiatric Service Dog Society
All the best. You and your wife will be in my thoughts. Keep in touch here.
Great comments and suggestions!! I like solutions that don't include medications...after being with patients using both options. 90% of the time, there is a solution that does not include medication...and not just for Alzheimer's patients.
Thank you b, I will do that, she is scheduled to go back to the Neurologist soon and I will ask for medication.
Just want to mirror what others said about taking care of yourself. And that includes online friendships! Feel free to DM me. I am also a caregiver. And it does get tough emotionally. Thankfully, my companion is not a wanderer. He is a sleeper.
BTW, we turned down the meds. He is already taking too many pills. And the pills only slow down the progression. The scary part are the warnings about what could happen if the pills are stopped suddenly. We are just too sporadic, so we are not going down the "another pill" route.
I thank all of you so much for the excellent advise you have provided. I have tried many of the things that you have suggested and it has helped me a great deal. I must say that it is nice to have so many knowledgeable people here to rely on in this situation. Thank you all again. I am still here and reading everyday.
I have to say there has been a ton of great advice in this thread. A lot of it my family learned the hard way when my parents began taking care of my grandfather. I wish we'd known when we started won the path of caring for my grandpa.
I do want to add a note about your own health. It is of equal importance to your wife's, which means that if you are feeling overwhelmed or over-frustrated, the care you give her may suffer, which is not something you want to happen. Adult daycare is a great idea to take some of the stress off of you, another is to hire an adult-care nurse for a few hours each week to relieve some of the stress.
As my grandpa progressed in his symptoms, he became resistant to anything my mom or I tried to do for him, even when he absolutely needed help--from showering and personal care (normal bathroom activities) to preparing meals. He didn't think it was appropriate for his daughter or grandson to be helping him with those things. This may not be an issue with a spouse, I obviously do not have that experience, but it helped us once we eventually hired a home care nurse for an hour each weekday to help with some of those things because he didn't associate nurses with his personal life (except one we had to dismiss because he thought she was my sister). And obviously, each individual with dementia has his or her own personality and "triggers."
I highly recommend keeping close tabs with your doctor and honestly discussing not only your wife's health, but also regularly having an honest assessment of your own health as you care for her. It can be an absolutely exhausting thing, caring for a loved one with dementia and you want to be able to continue providing the best possible care for her.
As my grandpa's condition progressed, we ended up installing 2-way deadbolts (requiring a key to both sides) on all of the outside doors and the door to the basement in order to prevent my grandpa from injuring himself. We lived outside of town in a wooded area where even GPS didn't work, so it would have been nearly impossible to find him if he wandered. And the basement--the stairs, he wouldn't even have noticed them in the later years of his illness. (For upstairs, we used a baby gate to prevent him from attempting them).
And just my personal experience: As a young man and a teenager, I was an idiot and periodically found myself resenting my grandpa for taking up so much of my time. Even though I respected my grandpa and loved him deeply, I was periodically short with him and was just not as caring as I should have been--something I now recognize as an adult. I feel terrible about it now that there is nothing I can do to change the way I behaved sometimes. It would have helped if I had been able to access some sort of support group that possibly could have taught me more about what to expect and how to deal with what I was feeling. Typically I'm the last person to recommend a support group in a lot of situations, but in this one I think it can be helpful as almost a classroom setting to help people working with dementia patients know what to expect and how to work with it in a constructive way.
Sorry, even now this is bringing tears to my eyes as I talk about it. It was a long and emotional experience for me as a young man and with my later realizations about how I could have been more compassionate toward my grandpa as he aged. I'll write more later if there are any questions, if this was at all helpful or if I'm making any sense at all at this point....
I have to say there has been a ton of great advice in this thread. A lot of it my family learned the hard way when my parents began taking care of my grandfather. I wish we'd known when we started won the path of caring for my grandpa.
I do want to add a note about your own health. It is of equal importance to your wife's, which means that if you are feeling overwhelmed or over-frustrated, the care you give her may suffer, which is not something you want to happen. Adult daycare is a great idea to take some of the stress off of you, another is to hire an adult-care nurse for a few hours each week to relieve some of the stress.
As my grandpa progressed in his symptoms, he became resistant to anything my mom or I tried to do for him, even when he absolutely needed help--from showering and personal care (normal bathroom activities) to preparing meals. He didn't think it was appropriate for his daughter or grandson to be helping him with those things. This may not be an issue with a spouse, I obviously do not have that experience, but it helped us once we eventually hired a home care nurse for an hour each weekday to help with some of those things because he didn't associate nurses with his personal life (except one we had to dismiss because he thought she was my sister). And obviously, each individual with dementia has his or her own personality and "triggers."
I highly recommend keeping close tabs with your doctor and honestly discussing not only your wife's health, but also regularly having an honest assessment of your own health as you care for her. It can be an absolutely exhausting thing, caring for a loved one with dementia and you want to be able to continue providing the best possible care for her.
As my grandpa's condition progressed, we ended up installing 2-way deadbolts (requiring a key to both sides) on all of the outside doors and the door to the basement in order to prevent my grandpa from injuring himself. We lived outside of town in a wooded area where even GPS didn't work, so it would have been nearly impossible to find him if he wandered. And the basement--the stairs, he wouldn't even have noticed them in the later years of his illness. (For upstairs, we used a baby gate to prevent him from attempting them).
And just my personal experience: As a young man and a teenager, I was an idiot and periodically found myself resenting my grandpa for taking up so much of my time. Even though I respected my grandpa and loved him deeply, I was periodically short with him and was just not as caring as I should have been--something I now recognize as an adult. I feel terrible about it now that there is nothing I can do to change the way I behaved sometimes. It would have helped if I had been able to access some sort of support group that possibly could have taught me more about what to expect and how to deal with what I was feeling. Typically I'm the last person to recommend a support group in a lot of situations, but in this one I think it can be helpful as almost a classroom setting to help people working with dementia patients know what to expect and how to work with it in a constructive way.
Sorry, even now this is bringing tears to my eyes as I talk about it. It was a long and emotional experience for me as a young man and with my later realizations about how I could have been more compassionate toward my grandpa as he aged. I'll write more later if there are any questions, if this was at all helpful or if I'm making any sense at all at this point....
Thank you to all the posters for the excellent and forthright info, anecdotes and opins...I have my best friend on the planet, of 32 years, eroded by Alzheimer's, and he has quickly deteriorated from "something's wrong with Bob" to ~stage 6 A. It is heartbreaking, depressing, and very hard to deal with; I cannot imagine having to go through it with a spouse.
With a friend or fam member who is 'sick/ill', recovering, etc., one can visit, call, and show you care and love that person. With the Big A, it is like the person is 'person-less' compared to what one knew of them, and they are not going to 'recover' or 'get better'.
Enough of my tale, but this has been a very helpful thread and I appreciate all of you that posted.
Best Regards, mD
Can anyone address the signs of dementia starting? I'm wondering this with my own dad as there's some subtle things showing. It makes me wonder if it isn't really subtle in some folks for awhile like in our area the famous basketball Pat Summit recently retired because of dementia and she wasn't that old. I think early 60's, when they interviewed her she came across perfectly normal & highly intelligent. So there must be subtle things affected her abilities for her to be asked to retire.
Also is it true people will act the opposite of their normal personality if they get dementia? My doctor told me this as she was relaying a story how her MIL used to hate her & was very ugly, but after she got dementia she behave really sweet towards her. So oddly the dementia she said had turned into a pleasant thing in that respect. Then a relative of mine who was always a quiet, mild mannered man turned violent after he got dementia and since he was 6 ft 5 his wife could not safely handle him so he had to be locked up in a special Alzheimers unit as he was so dangerous. He died just a few weeks later.
In my mother's case it was hoarding and paranoia--personality changes in other words. She started accusing family members early on of taking things out of her house, though in fact her house was so crammed full of stuff that chances are she just couldn't find the things. She esp accused my g-ma, her mother, and I know it was heartbreaking for g-ma but nothing that any of us could say would change her mind, which come to think of it may be a big red flag--no matter how rational of an argument you present, it will not turn them from believing in their story and it can be something totally off the wall. I doubt that all people with AD have this exact same thing--the hoarding and paranoia I mean, but I'm guessing that all get more irrational as time goes on and they tend to perseverate--they forget little things from moment to moment but they sure can remember that crazy thing they want to do.
For your second question, I don't believe that's always true. In fact, what I came to believe from watching mom go down is that it was an "unveiling." Like you know how we all have an inner personality and a social one and in some people they are quite different? I had always suspected that mom was a bit on the greedy side but with AD it became quite obvious and I think that's why she was so worried about people stealing from her--she couldn't stand to lose anything. I think that's odd about your dr's MIL though--usually we show our good side to the world so maybe the fact that she was mean to her DIL was due more to an outside influence like her DD feeding bad ideas to her or something and had nothing to do with her own true feelings. So maybe what I'm saying is that your true personality comes out, or in some cases it intensifies.
Quote:
Originally Posted by Saritaschihuahua
I get sad when I think of the restlessness some Alzheimer's patients experience. It's bad enough to be going through Alzheimer's, but restlessness as well.
My mom is quite restless at times. It scares me to think that perhaps she's scared about losing her memory.
Again, I suspect this, don't know it for sure, but I'm guessing the restlessness comes from not being able to do the things they once were able to do. Mom loved to make quilts and as the AD got worse she could no longer plan and execute a project and that's when the restlessness got worse. She was always an active and busy lady and then she couldn't do much of anything and I think the boredom got to her. Yes it was heartbreaking--maybe the worst part of it. My aunt, who is 95 and also used to sew, would take long strips of material and meticulously roll them up and pack them neatly into boxes and her ds and dd would find the boxes out in the yard. G-ma got her a big jar full of buttons and would tell her to go thru and pick out what she needed and that would keep her busy. So my suggestion to caregivers is to find some little "job" like that--something related to what they always liked to do, and then ask for their help.
Reality. Ah, Yes! The Magic word. It's time to learn that her "Reality" is a lot different from yours. Her mind does not process the information about her surroundings or time the way that you expect.
As many caregivers have learned, the best thing to do is learn to Fib. Lie and pretend. Go along with what she seems to be thinking and then try to figure out what to say that will please her.
It's her "Reality." It's the only one she knows. If you try to convince her that she's wrong, (or try to bring her back to reality) she will think that you are just lying to her. It confuses her as she cannot figure out why you would lie to her.
Oh yes, and I agree with this. It's very difficult for some of us to lie to the parent that slapped the crap out of us at 8 for lying. Or for folks who couldn't even tell a little white social lie--but you must learn to do it and to remember that it's for your parent's happiness. Think of it as redirection b/c someone was talking about the perseveration that comes with AD and it's like no matter what you do or say you cannot get them to change their mind, but sometimes a lie (the right one--you may have to try several) or a scene change can do the trick. For an example, last fall we had to get mom out of town to take care of some things that really needed to be done so my uncle kept her for a couple of weeks while we got 'r done and then I went to pick her up in the car. We drove from CO to MO and about halfway thru KS she couldn't take it anymore and wanted to get out of the car--on the highway! I had to lock the doors as she screamed and struggled to get out and I knew that if I could just stop at a gas station and let her use the bathroom it would change the scene and she would be fine, but wouldn't you know that on that particular stretch of KS highway, traffic was slow and 4 exits in a row were blocked due to hwy work! That was surely about the most stressful 45 minutes of my life. But sure enough when we finally got stopped, she was fine and the rest of the trip was uneventful.
And yes, whatever you do, don't contradict what they say--it will send them into broken record mode and you'll have a whale of a time trying to change their mind--much better to go along with what they say, and maybe make "promises" for later--a later which may never materialize but be careful with this too as they may get stuck on it. It's one of those things you'll have to experiment with and as soon as you figure out the magic words to redirect your wife, they will change but then perhaps the restlessness will be gone too.
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
This is excellent and it's exactly what I did with my mother. Once I learned her reality was gone, I didn't try to pull her back into it. When she asked questions, I would respond with "Gee, I don't know. What do you think, Mom?" She would go on and tell me what she was thinking and I would just agree with it. It broke my heart to do it but it was the only way I could cope. There is nothing more difficult that to watch a loved one slipping away from you. I've heard it said that it's easier to be a care giver to a stranger than a family member and I believe that's true. For the last six years of my mother's life, I was just that "nice lady who stopped in to visit." As heartbreaking as it was to say goodbye to her, there was a sense of relief that it was finally over. I hope that doesn't come across as callous because I loved my mother very much. It's just that it was a very long journey and it took an incredible toll on my family.
, I will do that, she is scheduled to go back to the Neurologist soon and I will ask for medication.
Or for folks who couldn't even tell a little white social lie--but you must learn to do it and to remember that it's for your parent's happiness. Think of it as redirection b/c someone was talking about the perseveration that comes with AD and it's like no matter what you do or say you cannot get them to change their mind, but sometimes a lie (the right one--you may have to try several) or a scene change can do the trick. For an example, last fall we had to get mom out of town to take care of some things that really needed to be done so my uncle kept her for a couple of weeks while we got 'r done and then I went to pick her up in the car. We drove from CO to MO and about halfway thru KS she couldn't take it anymore and wanted to get out of the car--on the highway! I had to lock the doors as she screamed and struggled to get out and I knew that if I could just stop at a gas station and let her use the bathroom it would change the scene and she would be fine, but wouldn't you know that on that particular stretch of KS highway, traffic was slow and 4 exits in a row were blocked due to hwy work! That was surely about the most stressful 45 minutes of my life. But sure enough when we finally got stopped, she was fine and the rest of the trip was uneventful. 
