I have lived (survived) through caring for three parents in our home, all with dementia. To say it was a challenge and nightmare at times is an understatement. All too well, I know the tears, depression, frustration, sadness, heartbreak, helplessness and hopelessness you are all experiencing. My heart goes out to you. Yet, there was joy, love, satisfaction and special bond that went along with caring for them during the closure years of their lives. Such a whirlwind of emotions on the roller coaster ride as we maneuvered the cliffs and slopes down Dementia Mountain.
Anyway, I too felt the hopelessness and frustration of desperately trying to hold onto the mental alertness that was fleeting from our grasp. My mother was not a TV watcher, so that form of entertainment/adultsitting was not an option. For a long time she would sew simple dolls that were donated to the pediatric department or women’s shelter. Then the day came when that was too complicated and frustrating for her; even cutting strips along the edges of fleece to make blankets was beyond her grasp. Until then, those were projects that helped her feel worthwhile and productive.
We went for rides around the lake and town where she had lived for over 50 years. Each trip was like a new adventure because she no longer recognized the familiar sites, but we always got an ice cream cone and it was a wonderful outing for us to share the beauty of the day. We would stop at a park or along the lake and just enjoy the view from the car when she could no longer walk. I would take her to visit old friends or have them over for lunch. She always liked that, even when she wasn’t sure who they were. I used to take her grocery shopping so she could pick out what looked good until one day she had a mini-stroke in the check out lane. I would put her in the wheelchair and push her around the yard or bundle her up and take her outside to watch as we hung Christmas lights. Many times, she would sleep in the w/c, but did enjoy being part of the activities. All of our parents would light up when the grandchildren and great-grandchildren would come to visit. Our 2-year-old grandson would bring great-grandpa an ice cream sandwich every night and he would perk right up and come out of an almost comatose state to have that treat with this little boy.
One Christmas, our daughter-in-law contacted all my mother’s family and friends and asked them to jot down memories they shared about her. She then put them all together in a lovely book. Mom would spend hours and hours reading and rereading those kind words. Sometimes she wondered who they were talking about and even who authored the words, but she repeatedly enjoyed every page. A dear friend also gave us some MEGA print books and I ordered Reader’s Digest LARGE print for her. She did like reading and these large print editions extended her enjoyment beyond her ability to retain the information. Often she didn’t get beyond one or two pages reading and rereading, forgetting she had just been there. That is one the positives of each day, (sometimes every 15 seconds), the forgetfulness makes repeated adventures brand new, that is if the repetition doesn’t drive you batty. I had her fold the laundry for me (most times I had to refold later), but she felt like she was contributing. She would set the table and loved to help in the garden. Mind you, very little of these helpful activities were actually helpful, but she felt good about it and that is all that mattered. On the loooooonnnnnngg days at home, very simple jigsaw puzzles (the large ones you get for very young children) passed the time when my mother’s eyesight began to fail and she could no longer read. A bird feeder outside her window brought the beauty of nature for her to watch…..and fill the feeder when able. The one game that saved my sanity and passed hours of time was Bananagrams. It was the BEST of all!!! It comes in this little bag shaped like a banana and has Scrabble like tiles. Needless to say, I ignored the official rules. We just used the tiles to make the connecting words. The beauty of this game is she worked at her pace and I was challenged as well. Each player makes their own words after selecting tiles from the center pile. The game continues until all the tiles are gone, then you start over. It was GREAT! It amazed me because she continued to see the letters on the tiles if I had a bright light on. As suggested above, dominoes could be another simple game to pass time. Sadly, just before I lost her, the day came when I knew she was fading beyond my reach, because instead of making words with the tiles, she started forming shapes with them. Her flowers were beautiful and creative, which was also a way to play the game, but, it was at that point, the last glimmer of connection and reality slipped away.
In between the long hours of sleep, these are just a few of the things I found worked for us. Each person is different with various levels of interest and capabilities. You will also find, there is nothing wrong with sleep. Allow your loved ones to set the pace and don’t push them to be what they no longer can. I tried and tried to do everything in my power to push my mother to stay vital, alive and young; we did with all our parents. However, her body and mind had another plan and no matter how hard I/we tried, she/they continued to slip away. I finally let her take the lead and we did what she was up to doing moment to moment. I learned extreme patience, tolerance, versatility and, most of all, acceptance.
Bananagrams would not have worked with my FIL as he didn’t read or enjoy those kinds of activities. He LOVED sitting on the back deck for hours simply watching nature and the world go by. My mother also enjoyed just sitting and watching the joy there is to be found in its beauty. Don’t push them to be what you want, they may no longer be mentally and physically capable of your wishes for them. Often times, we try so hard to hold onto what our parents and loved ones once were, we miss appreciating who they are. We must realize, as painful as it is, they are not the same personalities we used to know nor will they ever be again. It used to break my heart because, as I said, it was like dealing with at two-year-old, but the saddest part of dementia is they will not learn and grow like a two-year-old, only progressively regress to the point of unreachability. Please STOP! with the idiotic orientation to person, place and time!!! I mean, come on!! really now, do you honestly think it is vital for a dementia patient to know it is Wednesday, June 12, 2013!? Get a grip!! Moreover, to attempt bringing them back to our reality when their minds so strongly show them another reality is not only frustrating but also not possible and cruel. So, accept and love the world they live in, sometimes it will be the same as yours, but a lot of the time, it won’t. Be creative, they don’t need a major intellectual education, all they need and all they truly want, is your love, companionship and attention. Humor them when they repeat the same thing a million times a minute, try to do activities on their current level knowing they will only digress, but, most of all, love them the very best you can.
Try not to feel guilty for the ugly feelings that will creep into your care giving, and believe me, they will. It is the most difficult thing I have ever, ever done. The rewards are few and you will pray it all ends before you end up committed. Most of all, be gentle on yourself, you are doing the very best you can given the horrific circumstances. Someday you will look back and wish you could give them just one more hug, just one more kiss and exchange just one more smile with an I love you attached. I sure wish I could.
I send you all the very best. My heart and soul go out to all of you still in the middle of this extremely difficult lifestyle. My days of caring for parents came to an end on December 21, 2012 with the passing of our last parent. I desperately miss each of them every day, but find peace knowing we gave them a home with us where they felt safe, surrounded with those who loved them and the people and items they loved. That peace, love and security is all any of us truly want, especially in our final years and days.
I produced a 20-page history for Mom in large type, and I expand and update this periodically. She reviews it frequently and that helps her anchor her mind and makes her feel more settled. Her neighbors in Assisted Living tell me that would like a history like that for themselves so I am working with some of them to do just that. For those who do not read, a picture album with short captions in large type can be helpful. Also those books on local history that you can find in
When Mom was in rehab with other elderly patients, many with some level of dimentia, I tuned in the 2012 Olympics on the big flat screen in the day room, including the opening ceremonies and Dressage and Eventing. The patients were completely absorbed. Also Ice Skating (there are a lot of videos and some cable channels devoted to this) and ballet. I would bet that ski jumping would also get some attention. Mom played basketball in High School and I found that she responded to that as well. Televised parades! Miss America Pagent! Nature programs which have colorful photography. You might have to sit and point out what is going on or make appropriate comments to engage the patient at a higher level. "Sit and Be Fit" exercise program on one of the PBS stations. Encourage the patient to participate by doing some yourself. Sometimes, I would just put on some 1950's dance music and dance around to Mom's delight, and I would get her in the mood to wiggle a bit herself. These all were mood lighterners. Also, give the patient something he or she can do like pairing socks and folding undies while you fold the bigger items. Discuss the menu for the coming week and puzzle out the shopping list with them for each meal.
(continuing after an interruption) nearby bookstores or online which have photos of the patient's home turf during their early life can interest the dementia patient, and give rise to some personal stories.
For the past two years I have accompanied my mother through her diagnosis of Alzheimer's and her final days. She went to assisted living too late to help her through her depression and other issues. We wish we had found an Adult Day Care setting when she could still relate to people and enjoy activities. I now work in an Adult Day setting and the compassionate care, loving and up-beat atmosphere is a beacon of hope for caregivers and the elderly alike. The participants are socializing, active and engaged according to their abilities; they do group activities, laugh, tell stories, do puzzles together or alone, eat and exercise. It is like having a group of friends to meet every day. It is terrific haven for the elderly and also a great relief for the caregiver, knowing that they are doing the best they can to keep the loved one as mentally alert and physically monitored and still keep them aging in place in their home. I highly recommend it.
Hi! What did you mom like to do before? My mom loved going out for coffee and a muffin and watching everyone, especially the children. She would always talk with them. Some how the love in her eyes was so infectious, the kids would gravitate to her, and dance around. She also loved dogs, and loved stroking them. She was a professional musician, and loves listening to classical music. Touch, love, kisses, comfort are all good. She is now in a care home, and loves visitors, we sing to her, and she loves going to the park in her wheelchair. Eating chocolate. We used to play a numbers game with her, one of her care aides that we hired as a companion brought a set of flat plastic numbers...sort of like dominos but with numbers on them from 1-12. They would look for all the 2's, and line them up 1-2-3. IT was fun for her to find the similar numbers. but what made it fun was the way Irene would hug her and laugh with her, and tell her, hey! Girlfriend! You did it! Good for YOU!!! Irene always had her hand on my mom's shoulder, or linked arms, or cuddled her, this is what my mom craved. And we all do that with her. Hope this helps! Oh yes, TV was only useful if she was interested and it was gentle. Violent programs made my mom shake and cry for a long time. She also couldn't follow conversations easily, so animal programs, especially about dogs, or other animals, or nature were really great for her...ie language of love trumps verbal language! She also enjoyed some children's programs later on. Hope that helps...
I haven't read all of the other comments yet, but my mother, who had dementia for many years and she lived with me for 8 years after my father died. I have to be honest, I had someone in the home most of the time and I felt comfortable leaving the house to run errands and such. Our saving grace was that our city (Daphne, alabama) had an elderly center that would send a bus to pick her up every morning , feed her lunch, do some actvities and brought] her back home around 4 PM. I think we caregivers need to approach our care of our dementia ;loved ones with a little less intensity and trust that there are a lot of willing and loving people out there who want to help. Mom did this for 8 yrs and then she went into a major event, which was caused by too much lithium over the years and although I got her the proper hospital care and med changes it was time for me to make that decision for her to go and live in a home. She is 90 now and still remembers me and other family members. she was the life of her recent B'day Party, her best friend from the 40"s came to celebrate, we rented a local Hilton Hotel Rm, had dinner, cake\ and mimosas to celebrate. I spent the night sleeping next to my mother and and holding her all night long. I think we children of the elderly should give them a little more credit and dignity and loosen up a llittle. "Momosa and loopholerdh. My love to all of us.
My mom has Alzheimer's and we do all sorts of things with her. I refuse to let the disease control what we do. Mom crochets and cuts squares for a quilt we are going to make. But I take mom site seeing to see different things, I take her shopping, and travel with her.
We have good days and bad days, sometimes she wets herself and is mean other times she is in a great mood. My mom loves to get out and see things, so that is what we do.
In fact my mom does better when we are out and about. So I work from home, so we can do things during the day. I tend to work late into the night, but working from allows me to do these things and share these memories.
We try to figure out something to do every other day. My mom forgets some things that we can go visit a store again and it is like new. So we take her to stores we can't go to where she lives and she is just fascinated. The littlest things keep her interest.
I believe that when it comes to care giving it takes a posititve attitude and a sense of humor. There are challenges, I am not a fan of bathing my mom or even wiping her, but we have a lot of fun just walking through a store or going on a scenic drive looking for the simplest things like a bird or a flower.
In fact we have had some hiliarious adventures in bathrooms across the country, so I am saving them for a book I am writing.
We are even taking mom on her annual cruise. This year we go to a Southern cruise getting near the equator. These trips mean a lot to her. I just refuse to let things get in my way.
Just so you know my mom cannot walk, her leg is broken and isn't going to heal, but the doctor says she can live with it. Then we have Alzheimer's on top of that and people treat her very well and with understanding. We have been to some dinners at RV parks and the people are so kind to her. They take the time to talk with her even though they know her challenges. It is interesting because most of her siblings won't call, but strangers are nicer to her.
So my suggestion is be creative, get out of the box, fight and don't give up. You have to do what is right for you, but what we do keeps the mood swings far more level and gives us more good days.
I wish my husband were willing to go places and do things but he says he can't. He won't do the exercises from the PT guy, he won't read, he won't even go for a walk with me. He's always too tired, too dizzy, his legs are too wobbly...the excuses go on and on. I've even tried the psychology of telling him he has to try, he has to help me, he has to do something or he will end up in a wheelchair in a home....no response. He used to love to fish and ride motorcycles...neither of which he could do today because he won't fish from a pier. He's used to fishing from the Arctic to South America and everywhere in between. I can't seem to find anything to interest him. I really like many of the ideas I've read here....I wish I could use them.
Mom is happy in her Assisted Living facility which provides a high level of additional services. This is the same facility that she rejected years earlier. If your MIL does not require a lot of skilled nursing care (IV's, tube feeding, etc), but only injections and oral medications, I urge you to investigate the new Assisted Living packages. I signed Mom up for the LifeGuidence side of the facility mainly for the added services that were included in the package at discounted package price: Washing, Dressing, Supervision, Mobility (assistance getting in and out of bed), Medication Dispensing. The other side of the same facility offers all of these additional services but at incremental costs of $20, $40, or $60 per day for so many hours of provided assistance. A patient with light to moderate needs might fit in both sides. I have heard that discounts on the fees are available when the facility is looking to fill rooms. Mom is happier, and I am not run ragged. I visit two or three times a week to deliver supplies and check on her and participate in some of the activities like singing, and when the spirit moves, I break out dancing and we make quite a spectacle of ourselves, Mom and me, dancing in the day room, sometimes to applause. You will have much more fun and so will she.
Anyway, I too felt the hopelessness and frustration of desperately trying to hold onto the mental alertness that was fleeting from our grasp. My mother was not a TV watcher, so that form of entertainment/adultsitting was not an option. For a long time she would sew simple dolls that were donated to the pediatric department or women’s shelter. Then the day came when that was too complicated and frustrating for her; even cutting strips along the edges of fleece to make blankets was beyond her grasp. Until then, those were projects that helped her feel worthwhile and productive.
We went for rides around the lake and town where she had lived for over 50 years. Each trip was like a new adventure because she no longer recognized the familiar sites, but we always got an ice cream cone and it was a wonderful outing for us to share the beauty of the day. We would stop at a park or along the lake and just enjoy the view from the car when she could no longer walk. I would take her to visit old friends or have them over for lunch. She always liked that, even when she wasn’t sure who they were. I used to take her grocery shopping so she could pick out what looked good until one day she had a mini-stroke in the check out lane. I would put her in the wheelchair and push her around the yard or bundle her up and take her outside to watch as we hung Christmas lights. Many times, she would sleep in the w/c, but did enjoy being part of the activities. All of our parents would light up when the grandchildren and great-grandchildren would come to visit. Our 2-year-old grandson would bring great-grandpa an ice cream sandwich every night and he would perk right up and come out of an almost comatose state to have that treat with this little boy.
One Christmas, our daughter-in-law contacted all my mother’s family and friends and asked them to jot down memories they shared about her. She then put them all together in a lovely book. Mom would spend hours and hours reading and rereading those kind words. Sometimes she wondered who they were talking about and even who authored the words, but she repeatedly enjoyed every page. A dear friend also gave us some MEGA print books and I ordered Reader’s Digest LARGE print for her. She did like reading and these large print editions extended her enjoyment beyond her ability to retain the information. Often she didn’t get beyond one or two pages reading and rereading, forgetting she had just been there. That is one the positives of each day, (sometimes every 15 seconds), the forgetfulness makes repeated adventures brand new, that is if the repetition doesn’t drive you batty. I had her fold the laundry for me (most times I had to refold later), but she felt like she was contributing. She would set the table and loved to help in the garden. Mind you, very little of these helpful activities were actually helpful, but she felt good about it and that is all that mattered.
On the loooooonnnnnngg days at home, very simple jigsaw puzzles (the large ones you get for very young children) passed the time when my mother’s eyesight began to fail and she could no longer read. A bird feeder outside her window brought the beauty of nature for her to watch…..and fill the feeder when able. The one game that saved my sanity and passed hours of time was Bananagrams. It was the BEST of all!!! It comes in this little bag shaped like a banana and has Scrabble like tiles. Needless to say, I ignored the official rules. We just used the tiles to make the connecting words. The beauty of this game is she worked at her pace and I was challenged as well. Each player makes their own words after selecting tiles from the center pile. The game continues until all the tiles are gone, then you start over. It was GREAT! It amazed me because she continued to see the letters on the tiles if I had a bright light on. As suggested above, dominoes could be another simple game to pass time. Sadly, just before I lost her, the day came when I knew she was fading beyond my reach, because instead of making words with the tiles, she started forming shapes with them. Her flowers were beautiful and creative, which was also a way to play the game, but, it was at that point, the last glimmer of connection and reality slipped away.
In between the long hours of sleep, these are just a few of the things I found worked for us. Each person is different with various levels of interest and capabilities. You will also find, there is nothing wrong with sleep. Allow your loved ones to set the pace and don’t push them to be what they no longer can. I tried and tried to do everything in my power to push my mother to stay vital, alive and young; we did with all our parents. However, her body and mind had another plan and no matter how hard I/we tried, she/they continued to slip away. I finally let her take the lead and we did what she was up to doing moment to moment. I learned extreme patience, tolerance, versatility and, most of all, acceptance.
Bananagrams would not have worked with my FIL as he didn’t read or enjoy those kinds of activities. He LOVED sitting on the back deck for hours simply watching nature and the world go by. My mother also enjoyed just sitting and watching the joy there is to be found in its beauty. Don’t push them to be what you want, they may no longer be mentally and physically capable of your wishes for them. Often times, we try so hard to hold onto what our parents and loved ones once were, we miss appreciating who they are. We must realize, as painful as it is, they are not the same personalities we used to know nor will they ever be again. It used to break my heart because, as I said, it was like dealing with at two-year-old, but the saddest part of dementia is they will not learn and grow like a two-year-old, only progressively regress to the point of unreachability. Please STOP! with the idiotic orientation to person, place and time!!! I mean, come on!! really now, do you honestly think it is vital for a dementia patient to know it is Wednesday, June 12, 2013!? Get a grip!! Moreover, to attempt bringing them back to our reality when their minds so strongly show them another reality is not only frustrating but also not possible and cruel. So, accept and love the world they live in, sometimes it will be the same as yours, but a lot of the time, it won’t. Be creative, they don’t need a major intellectual education, all they need and all they truly want, is your love, companionship and attention. Humor them when they repeat the same thing a million times a minute, try to do activities on their current level knowing they will only digress, but, most of all, love them the very best you can.
Try not to feel guilty for the ugly feelings that will creep into your care giving, and believe me, they will. It is the most difficult thing I have ever, ever done. The rewards are few and you will pray it all ends before you end up committed. Most of all, be gentle on yourself, you are doing the very best you can given the horrific circumstances. Someday you will look back and wish you could give them just one more hug, just one more kiss and exchange just one more smile with an I love you attached. I sure wish I could.
I send you all the very best. My heart and soul go out to all of you still in the middle of this extremely difficult lifestyle. My days of caring for parents came to an end on December 21, 2012 with the passing of our last parent. I desperately miss each of them every day, but find peace knowing we gave them a home with us where they felt safe, surrounded with those who loved them and the people and items they loved. That peace, love and security is all any of us truly want, especially in our final years and days.
Hugs, prayers and peace to you all.
for many years and she lived with me for 8 years after my father died. I have to be honest, I had someone in the home most of the time and I felt comfortable
leaving the house to run errands and such. Our saving grace was that our
city (Daphne, alabama) had an elderly center that would send a bus to
pick her up every morning , feed her lunch, do some actvities and brought]
her back home around 4 PM. I think we caregivers need to approach
our care of our dementia ;loved ones with a little less intensity and trust
that there are a lot of willing and loving people out there who want to help.
Mom did this for 8 yrs and then she went into a major event, which
was caused by too much lithium over the years and although I got her the
proper hospital care and med changes it was time for me to make that
decision for her to go and live in a home.
She is 90 now and still remembers me and other family members.
she was the life of her recent B'day Party, her best friend from the 40"s
came to celebrate, we rented a local Hilton Hotel Rm, had dinner, cake\
and mimosas to celebrate. I spent the night sleeping next to my mother and
and holding her all night long. I think we children of the elderly should
give them a little more credit and dignity and loosen up a llittle. "Momosa and
loopholerdh. My love to all of us.
r
We have good days and bad days, sometimes she wets herself and is mean other times she is in a great mood. My mom loves to get out and see things, so that is what we do.
In fact my mom does better when we are out and about. So I work from home, so we can do things during the day. I tend to work late into the night, but working from allows me to do these things and share these memories.
We try to figure out something to do every other day. My mom forgets some things that we can go visit a store again and it is like new. So we take her to stores we can't go to where she lives and she is just fascinated. The littlest things keep her interest.
I believe that when it comes to care giving it takes a posititve attitude and a sense of humor. There are challenges, I am not a fan of bathing my mom or even wiping her, but we have a lot of fun just walking through a store or going on a scenic drive looking for the simplest things like a bird or a flower.
In fact we have had some hiliarious adventures in bathrooms across the country, so I am saving them for a book I am writing.
We are even taking mom on her annual cruise. This year we go to a Southern cruise getting near the equator. These trips mean a lot to her. I just refuse to let things get in my way.
Just so you know my mom cannot walk, her leg is broken and isn't going to heal, but the doctor says she can live with it. Then we have Alzheimer's on top of that and people treat her very well and with understanding. We have been to some dinners at RV parks and the people are so kind to her. They take the time to talk with her even though they know her challenges. It is interesting because most of her siblings won't call, but strangers are nicer to her.
So my suggestion is be creative, get out of the box, fight and don't give up. You have to do what is right for you, but what we do keeps the mood swings far more level and gives us more good days.
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