One of the most difficult dementia behaviors for caregivers to cope with is false accusations. We’ve all had the experience of losing track of something, thinking someone must have taken it, and then later finding the object and discovering we were mistaken. Dementia patients, with their short-term memory problems and tendency towards paranoia, are all the more prone to these kind of misunderstandings. Because so much of their world no longer makes sense, they have a need to explain things and are unable to accept that the strange occurrence may be due to their own actions or perceptions. Is mom’s favorite sweater missing? Horrifying as it may sound, to her the most likely explanation may be that you stole it! They are also grappling with the insecurity that comes with old age, so the “lie” may be an unconscious attempt to preserve their dignity. Dad can avoid the embarrassment of misplacing his watch if he believes the aide stole it.
Mistreatment and abuse of elders certainly does happen. But perhaps more often, the wrong exists only in the senior’s mind. What’s tragic is that these accusations are often leveled at loved ones and caregivers who are trying hard to make sure the senior is safe and comfortable.
How can you cope with this difficult situation? Here are some suggestions.
Bring in someone to help you. Find a third person to help you explain yourself. It may be a friend of your loved one’s, a staff member at the assisted living facility, or another family member. Seeing that someone else will back you up may help your loved one realize that they’re placing blame where it doesn’t belong.
Seek advice from a senior care counselor. An expert in senior care can teach you good ways to respond to your loved one. You may want to start with the Alzheimer’s Association’s 24/7 Helpline at (800) 272-3900.
Keep good financial records. Accusations often have to do with money. Being able to show documentation that proves what’s going on with a senior’s finances can help straighten things out.
Bring a family mediator on board. Sometimes within families there can be confusion about what to believe. A mediator can help everyone sort through the issue as calmly as possible.
Consult an elder care lawyer. This is only for extreme situations, but especially with accusations of abuse or major financial wrongdoing you may need to take serious measures to protect yourself.
Before you take any major action to address the problem, remember that your loved one may forget about it the next day and display no ill will towards you. In the strange world of dementia, sometimes what seems like a serious problem will simply evaporate. And always remember that such behaviors are caused by the disease, and often mean nothing about how caring or devoted you’ve been.
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Those in the later stages of dementia may have lost much of their former mobility, but that doesn’t mean that they can no longer exercise, or that it isn’t beneficial to do so. As discussed in an earlier post, dementia patients can slow the progress of the disease by working some activity into their daily routine. We’re not talking jogging and playing volleyball, but rather simply moving and experiencing some physical challenge.
Here are a few exercises that those in the later stages of dementia should be able to complete:
/by Moti Gamburd- Encourage your loved one to stand up and move around as much as possible. This will maintain strength in the legs and help with balance.
- Have your loved one lie flat on the bed for up to a half hour. This will give the neck a break and help him or her stretch out.
- Help your loved one sit without support. They should not try this out when they’re alone, as there’s a chance they may fall. This will aid the muscles in the stomach and the back that support posture.
- Your loved one can also stand and balance. If they need to hold onto something for support, they’ll still get some benefit. They can even try this any time they have to stand for a few minutes, such as in the shower.
- Have your loved one sit on one end of the bed, and then scoot to the other end while sitting. This exercise is good practice for getting up from a chair.
We know that exercise is important, but sometimes we forget that that applies to seniors too. Getting some form of exercise can increase the quality of life for dementia patients and keep them healthier. One study even found that seniors who exercise pay less in medical bills!
Of course, high-impact aerobics or a Muscle Beach strength routine wouldn’t be appropriate for most seniors. But there are plenty of exercises that they can do. Below are some suggestions for those in the earlier stages of dementia. Our next post will offer exercise suggestions for those in later stages.
Walking
Walking is perhaps the most basic exercise of all. To get started, all you need is your own two feet. It’s easy to design a walking routine to fit what that particular person is capable of: they may take a walk around the neighborhood or simply down the hall and back. Two friends can even go for a walk together to combine physical exercise with socialization benefits.
Tai Chi
Tai Chi is a slow and graceful form of Chinese martial arts that’s been shown to reduce stress and improve balance and stability. It can be thought of as a form of moving meditation, more gentle and relaxed than yoga. Its movements are perfect for seniors due to the activity’s easy, gentle pace.
Swimming
Many seniors enjoy swimming, finding it to be a relaxing activity in which movement is less jarring to the joints. If your loved one enjoys the water, this could be the perfect activity for them. Keep in mind that seniors with dementia should be supervised while swimming.
Dancing
You don’t need to be fast and build up a sweat to be dancing. You can even dance while sitting down! For seniors, swaying back and forth can be beneficial. The music and the fact that dancing is usually done with others adds social and emotional advantages to this activity.
Gardening
Even if your loved one wasn’t a gardener earlier in life, they can still take up this pastime now. Simple activities like weeding or watering don’t require a green thumb or prize-winning expertise. This activity provides the sensory benefits of the colors, smells, and textures, and also allows seniors to take meaning from the effort involved in making something grow. There’s a certain satisfaction in achieving results, no matter how simple.
Seniors should get the same amount of exercise as the rest of us: 30 minutes for five days per week. This may sound like a lot, but keep in mind all 30 minutes don’t need to be done at once.
Be sure to consult with your doctor before beginning any exercise routine.
/by Moti GamburdOn your last visit, Mom seemed kind of down so you’re determined to cheer her up today. You open the door to her room. She looks up with a smile that reminds you of the days you’d run home from school with a 100 on your spelling test. She rises and gives you a big hug. “Ella, I am so glad to see you. I was beginning to think you’d forgotten all about me.”
She’s showing more enthusiasm than she has in weeks. So why is your stomach in free fall, and your heart pounding to beat the band? It’s because your name is Barbara. Ella is Mom’s older sister who died four years ago. What do you do? You want to keep her spirits up, but you don’t feel it’s right to play along.
Mistaking children for siblings or other loved ones is not uncommon in Alzheimer’s patients. Alzheimer’s patients lose short term memory but not their recall of the past. You look after her interests. You make sure everything’s going well. You’re her protector, just like big sister Ella used to be. Seeing you may have caused a cross wire.
When Mom recalls her long ago, it’s like she’s living in a dream. Now you’re here but the dream remains. She’s made you a part of it. You want to wake her up, but gently.
There are several things you can do. But first and foremost, do not take offense. Think of her misrecognition as a compliment. She’s connecting you with someone she loves. Secondly, do not argue with her. Don’t make her see. Help her see.
Listen to her, let her say what she has to say, then try to re-direct her focus. Switch the topic. A change of scenery may help. Suggest going for a walk. Address her by name – Mom. Hearing that one word may be all it takes, but it may not always work. It’s in both of your interests to try to prevent this from happening again. Here’s a suggestion you may want to try. This may even be fun – for both of you.
First, gather up all the old photos you have at home. Scour the basement or the attic. What you want is a time line of Mom’s life: as a young mom, with you and all your siblings, and on through all the stages of the family’s life If you’re lucky you can extend it even further back, with photos of Mom when she was a child – with Aunt Ella. This may keep her in the present and if nothing else, will be an emotional bonding experience for you both.
Next, gather some present time photos. You, Mom, your siblings, the grandkids, if they visit. That’s all you need. You don’t want to confuse her or you’ll be back where you began. Bring some cute labels. Make it a project. Label each photo, and create a timeline from past to present. This may help to trigger mom’s memory about who you are, by connecting an image of you from the past with what you look like now. Hang the timeline in a prominent place in her room.
Finally, you don’t want to go down this path again, so next time you visit, identify yourself – face to face. “Hi Mom! It’s your daughter Barbara.” If mom has a favorite nickname for you, refer to yourself that way.
If you can keep her in the present, there’s no need to bring her back.
/by Moti Gamburdfor caregivers can provide you with ideas for how to make this time happier and more comfortable for your senior, as well as how to best take care of yourself.
If you have a loved one who has dementia, what can you expect as the disease progresses? The stages below can give you some idea. Each individual’s experience is a little different, but this outline can give you a sense of what the future holds.
Stage One
During Stage One, no symptoms are present. Even a doctor would not be able to immediately tell that the person has dementia, and the person themselves doesn’t notice anything wrong.
Stage Two
Stage Two brings some mild changes in cognition. During this stage, it’s hard to tell whether memory problems are the beginnings of dementia or just changes that take place with normal aging. The person will forget words and names and also lose things.
Stage Three
Now other people besides the senior begin to notice that there’s a problem. The person will lose valuable objects, forget what they’ve just been told, and start to have trouble at work or in their social life. They may get lost on the way to a familiar place.
Stage Four
At this point, it’s time for medical attention. The person becomes more and more forgetful, even to the point of forgetting parts of their life story and people they know. More difficult mental math problems are now out of reach, and their ability to concentrate decreases. Their personality also begins to change as they withdraw from others and are moody.
Stage Five
In Stage Five, others will clearly be able to determine that a person has dementia, and the individual will start to depend on caregivers for help. They’ll forget information that they need from day to day, like the names of family members. The person might dress inappropriately and be confused about what happened when.
Stage Six
Caregivers and other loved ones will find this stage to be the most challenging. Some patients will have trouble sleeping or will wander. They are also likely to need help using the bathroom or getting dressed. They’ll experience delusions, become anxious and obsessive, and forget even information as important as the name of their spouse.
Stage Seven
Finally, the senior will need help even with very basic tasks. They’ll have great difficulty speaking and expressing their emotions. They’ll also need assistance almost constantly, to do even simple tasks like eating. Walking may be impossible.
It’s not easy to watch a loved one decline, but knowing what to expect can make it a little bit easier. Our articles /by Moti GamburdLearning that your loved one has been diagnosed with Alzheimer’s will bring a flood of worries and emotions. You’ll feel shock, grief, fear, and anger. You’ll wonder how you can help them and what changes will take place, both for them and for you. This will be a difficult time. In the midst of this whirlwind, though, know that there are decisions to be made, and it’s better to tackle them now rather than put them off. The earlier you do so, the easier it will be for everyone, and the more chance you have of making sure your loved one is involved in the process.
1. Who will take care of your loved one’s finances and medical decisions when they can no longer act on their own behalf?
This is never an easy conversation, but it’s an essential one for all adult children to have with their parents. Hopefully, you’ll be able to discuss this while your parent is still competent enough to make arrangements, and you can get their wishes in writing. An attorney who specializes in elder issues can be a helpful guide, and the Alzheimer’s Association also provides a number of useful resources.
2. Who will care for your loved one?
Don’t assume that a particular person, whether it’s your parent’s spouse or your sister who lives five miles from your parent, will be the one to take on the primary caregiving responsibilities. No one wants such a large commitment foisted upon them. Remember that someone with Alzheimer’s eventually will require constant care, and that may not be something that anyone in your family is able to provide. Those closest to the patient should meet to discuss expectations and the feasibility of different possible situations.
3. Where will your loved one call home?
Most seniors will want to stay in their own home as long as possible, but at some point it’s likely that this living arrangement will no longer be viable. Think about how easy their current residence will be for them to navigate as the disease progresses and as they continue to age. Consider both having your parent move to be closer to family and choosing an assisted living facility or board and care home.
It may seem next to impossible to tackle these big decisions during such an emotional time. But you’ll be glad later that you’ve moved forward on taking charge of the situation. You can’t control the diagnosis, but you can influence how you and your family begin to move ahead.
/by Moti GamburdDid your life change the day you had dinner with Mom and Dad, and Dad told you who he met at the bank that day, then told you again fifteen minutes later, and maybe again, as you were leaving to go home? Short term memory loss is one of the first discernible warning signs of dementia, and no matter how many times your parent displays it, you’re still at a loss to find the best way to react. Guess what? There is no one best way.
Listening is the easy part, but what do you do when you’re faced with the same question each time you visit? Maybe several times each visit. Some are easily answered. Dad wants to keep up with what’s going on in your life so he keeps asking, “How old is Jimmy now?” “What grade is Diane in this year?”
Depending on your mood, you play a game with yourself, testing your own memory to see if you can answer with the same words each time. Or maybe you offer some details, hoping they’ll help the information stick in his memory. The most important thing to remember here is what lies behind the question. Dad’s ability to retain details is gone, but he’s still their doting Grandpa and he’s asking because he loves your kids. If you can remember that, it’s not so hard to be patient.
But sometimes the question is more challenging, such as “Where’s Mom?” Or “How is Mom? Why hasn’t she been in to visit me?” Sounds simple to answer, and it is if Mom is well, at home, and came in earlier that morning. It becomes difficult and heartbreaking if Mom passed away – last year, last month, or even twenty years ago. What do you tell him?
There is no one way to approach this, and you will probably have to approach it repeatedly. Remember: no matter what you say, how you say it is just as important.
The first time he asks, you might want to tell him very simply “Mom has passed away.” Let him process the information. Give him the space, time, and quiet to grieve as he sees fit.
The next time he asks, reminding him that you already told him is futile. It may agitate him or make him feel belittled. Whether or not to tell him again that she’s passed away is your decision. Some feel that their loved one should get a completely honest answer every time. Others feel it’s too much to put a person through grief over and over. You might tell him again, and reassure him that he’s okay, she’s okay, and you’re here with him. You may choose to dance around the question and simply say something like: “Mom is doing fine.” You might distract him by changing the subject, and avoid answering the question.
Sometimes the simplest path to take might be saying Mom’s not here now. It’s the truth. Then talk with him, listen to him, and try to gauge where he is right now. Where does he expect Mom to be? How old should she be? Keep in mind that his reality is not necessarily anchored in today. Determine where it is. From there you might try to elicit memories, and in a way, bring her back to him, if only for a short while. In so doing he might even realize the difference between now and then, and acceptance might come a little easier. Going over old family photos is a subtle way to note the passage of time.
Over time, consider how he has he reacted to your previous explanations. Does telling him over and over reopen the wound? Keep in mind that his capacity for cognition has diminished but not his capacity for emotion, so say what you say with all the respect, care, and love you feel. There will be many times when this isn’t easy. But the more your responses come from your best self, the one who’s trying as hard as possible, the more likely you are to be at peace with this time looking back on it later.
/by Moti GamburdIf you feel that you’ve already lost your loved one, even though he or she is still alive, you may be experiencing some of the classic and normal signs of grief that usually aren’t felt until your loved one has died. Reading articles, websites, and books about coping can be helpful, and you can also consider some of these ideas.
Know That They’re Still There
Remember that at one time, your parent knew a different “you.”
You as a baby, a toddler, and a child were a different version of you, but it was you nonetheless. If you can see your parent as being at a different phase of his or her life, it can be less painful than allowing yourself to think that he or she is gone.
Cherish the Memories
Make the assumption that your loved ones can see and hear some of what you’re saying and doing. Talk to them, read to them, and continue the same as you would if they were sitting up smiling at you. It will absolutely give you much comfort in knowing that you have truly done your best.
Be Kind to Yourself
Were you patient enough? Did you love them enough? Did you respond quickly enough to feed them, change them, and answer the phone when they called? Were you…good enough?
Yes. You were. The loving care that your parent is receiving now is a result of you being “good enough.” Your parent cared for you, and you were able to come full circle and care for him or her and ensure that he or she is receiving the best possible care.
Explore Others’ Experiences
When he was diagnosed at the age of 57, Tomas DeBaggio wrote Losing My Mind: An Intimate Look at Life with Alzheimer’s. His book, the first of its kind, chronicled the extraordinary account of his journey through the disease. He said that it “silently hollows the brain” and slowly “gobbles memory and destroys life.”
He wrote the book for himself in an effort to remember his life before he lost it forever, but it serves as a landmark piece of literature that helps the aging and their families understand the mind of the Alzheimer’s victim.
The first step in this challenging time is for families to understand that their loved ones are not gone. They may appear to be gone, and their doctors may say that their minds are gone, but they are still there. All research indicates that though they may not respond to much and they cannot express themselves, they do feel.
Above all, be good to yourself. This time is probably at least as difficult for you as it is for them.
/by Moti Gamburd You finally made the decision to entrust Mom to assisted living. You know she’s being cared for with respect and dignity. She’s made friends with the lady in the next room. She seems to be eating well. So why does your stomach do a free-fall each time you drive over to visit her? Is it because you’re not sure what Mom will be like or how she will receive you? Watching a parent disappear into the muddle of age-related dementia or Alzheimer’s disease is not a charted course, nor is it a smooth one.
Don’t Be the Teacher
Do you find that one of the hardest parts of dealing with your parent’s aging is the reversal of roles? All of a sudden you’ve become Mom’s mom. You’re in charge. You have to come up with the answers. Or do you?
You try to give her the tips and tools that worked so well with your kids, but in the end, your efforts end up frustrating and angering her.
For example, she’s told you how frustrated she feels about not knowing what month it is, let alone what day. When your son was in kindergarten, he always wanted to know this information so he could report it at opening ceremony in school each morning. You bought him one of those A-Day-At-A-Time calendars, a Charlie Brown one. He’d faithfully tear off a cartoon each morning and be ready for the day.
So you buy one for Mom: A Joke-a-Day. That will get her day off to a good start. But each time you visit, the pages remain un-torn. You tear them off and remind her how this will help her. Sometimes she seems to ignore you. And other times she rages out. “I”m sorry! I forgot! What’s the difference, anyway?!”
Be Subtle
The difference you need to remember is that what works with children will not work with an Alzheimer’s patient. Children’s brains are developing, displaying a sponge-like ability to absorb and imitate. They want to remember so they’ll do it right next time. So does Mom. But the plaque that is part of the Alzheimer’s puzzle has literally clogged her brain. She may be able to retain your tip for a day, an hour, maybe only a minute. Lessons won’t work. Don’t be a nag.
Why not begin each visit with “Wow, what a stormy Tuesday this turned out to be!” or “Can you believe how April is just flying by?” This is a subtle way to clue her in to where we are on the calendar.
Easy Does It
Are you concerned that she seems to be spending more time in the past than the present?
Remember when you chastised your kids for fantasizing or daydreaming? That’s not what Mom is doing if she thinks she’s back in her childhood days. Her short term memory is gone, but long-ago remembrances remain. For her, the past is more tangible than yesterday.
When it’s your turn to speak, try to gently bring her into the present with tidbits of what’s going on in your life. Stay on the easy does it road and bring her into the present. Yanking is never a good idea
Look for Options
Remember how frustrated your daughter used to become, bursting into tears when she couldn’t zip her jacket? Well, that’s exactly how Dad feels now. Your daughter eventually learned, through necessity. But does Dad need a zippered jacket? Buttons do the same job.
As you discovered with your children, some approaches work. Some don’t. If you’ve found one that does – great! If you haven’t, sometimes it’s best to follow the advice of The Beatles and…
Let It Be.
/by Moti Gamburd
It’s difficult to think of things to do with a parent or other loved one who has dementia. Your options may seem quite limited. However, it’s important to make the effort to find ways to spend quality time together: this will improve your loved one’s happiness and their health. Below are some tips to get you started: once you begin to think about it, you may realize that there’s more that you can do than you think.
1. Come up with activities that incorporate their interests.
All of us thrive and are much happier when we’re doing things we enjoy. But what if your loved one is no longer capable of taking part in the activity in the same way they once did? The answer is to think of ways to modify their hobby. For example, if they once loved to read but their eyesight has deteriorated to the point where they can longer read even large-print books, you can get them audio books and a good set of headphones. If they once loved to play baseball, make sure they have a radio or TV that they can use to catch the game, or even take them to a day at the ballpark.
2. Don’t just try to pass the time.
Ideally, the activity you do together will have a lot of meaning to both of you. Don’t plan to do something that neither of you would have enjoyed twenty years ago. Sometimes people rationalize not putting much thought into the time they spend with loved ones with dementia by telling themselves that the person won’t remember the activity anyway. It’s true, they may not remember, but they can enjoy the present when they’re in the moment.
3. Do something that involves social interaction.
We all need to feel connected to others, even those of us with dementia. We make an effort to visit with a loved one in assisted living for this very reason. But try to add variety as much as you can. Consider taking your loved one with you on outings – even just a simple trip to the mall or to a park can be interesting and different for them. (Do try to avoid very hectic places, though, as that could make your loved one anxious.) Even if they’re not able to leave home, try to make sure they see new faces. Ask visiting relatives to come to their care home with you when they’re in town, or bring one of your loved one’s former neighbors by to say hello.
4. Do something that involves exercise.
Does your loved one tend to wander, as many dementia patients do? The underlying cause of this behavior may be a lack of exercise. Try going for a walk with them around the neighborhood, or get them an exercise bike if they’re still limber enough to use it. This can be a solution for boredom and anxiety./by Moti Gamburd
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