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Learning 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.
Did 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.
If 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.
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.
Photo used under Creative Commons from Marg S.
Parkinson’s disease is something that develops slowly over time. In the beginning, symptoms may be mild, but will eventually become more severe. This is due to the gradual decrease of the neurotransmitter dopamine. Nerve cells that use dopamine to send messages to control muscles can no longer do so if the brain cannot supply them with sufficient amounts of the chemical messenger.
Recognizing Parkinson’s
The common conception of a person with Parkinson’s is that they suffer from uncontrollable tremors and muscle movements, but this doesn’t occur in the early onset of the disease, nor is it universal in all sufferers. Researchers have isolated four pre-motor symptoms:
- Body movements occurring during REM sleep when only the eyes should be moving
- History of constipation
- History of depression and anxiety
- Diminished sense of smell
- Changes in speech patterns such as slurring, hesitation, low volume, a monotonous voice, and difficulty in choosing words
- Increased sweating or urination
- Changes in personality
- Low blood pressure when standing
- Foot cramps
- Drooling
- The face: this manifests itself as “Parkinson’s Mask,” or the loss of ability to smile, blink, or alter facial expressions
- Fine motor skills: handwriting may be unusually small
- Muscle coordination: there may be difficulty with walking, rising from a seated position, and swallowing
- Cognition: watch for memory problems, the degeneration of problem-solving skills, attention deficit, confusion, and the inability to make decisions,
- Mental health: the person may experience depression, hallucinations, or signs of dementia
- Levodopa, also known as L-Dopa, travels to the nerve cells of the brain that should be producing dopamine, where it is converted to dopamine for use as a neurotransmitter.
- Carbidopa increases Levodopa’s effectiveness and decreases possible side effects like nausea, vomiting, and occasional heartbeat disturbances.
The loss of your loved one’s vision is a loss of their independence and a battle with their quality of life. The decline in their depth, central, and peripheral perception has a negative effect on mobility, communication skills, safety, and emotional health. It’s very important to come up with a plan to help them cope.
Impact of Vision Loss
The easiest way to think of how your loved one feels is to think of someone who is hearing impaired. They communicate by sight, with their hands, and read lips. They are able to pick up facial expressions, head nods, and gestures. You may already have to speak louder to a loved one because of hearing loss. The loss of two senses is heartbreaking and leads to a lack of social interest and activity, a poor quality of life, anxiety, and even depression.
There are also safety issues associated with vision loss. Your loved one is in danger of falling doing normal activities, slipping on spilled oils, lotions, or food. They could trip over cords that were previously tucked away, or miss stepping over something because of poor judgment of the height of an object. Loss of vision impairs driving ability and increases the chances of vehicle accidents. The worst safety concern is that your loved one might not be able to effectively communicate what is wrong because they’re in a state of panic and not able to see their surroundings properly. Living in assisted living can mitigate some of these risks because the environment is designed for senior safety, but it’s impossible to completely prevent accidents from happening, especially if a senior miscalculates what they can handle.
Helping Your Loved Ones Cope With Vision Loss
There are many things you can do to help your loved one cope with vision loss.
- Color code medicine bottles or purchase pill containers to help with medication management
- Make standardized arrangements of household items
- Add safety features to household items such as table edge guards and gates around stairs, and place non–slip mats around slippery areas such as the kitchen
- Decrease glare from the sun or other light sources in the home; add motion sensors and plenty of lighting
- Minimize clutter and bulky furniture
- Attend eye doctor appointments with your loved one; discuss all medication because drug reactions can have side effects on vision as well
When you visit your loved one, do you ever take a look at any other residents? I mean really take a look. Or have these elders become part of the background of the facility? How about that tiny woman with the thick glasses who’s always in the main lounge, shading her eyes from the light; or the frail man with the gray hair who nods at you from his wheelchair whenever you pass by? And that Asian man who likes to sit by the window watching the traffic outside, have you ever wondered about him?
Your mom or dad’s new neighbors all have a piece of history attached to them. Some struggled in school, while others triumphed. Some worked with numbers while some pursued their creative abilities. Some individuals worked at exciting or prestigious jobs, others at boring repetitious ones. They lived, loved, and laughed, just like your mother or father. Why not take the time to learn a bit about them, too?
When you’re spending time in the lounge with your mom or dad, choose a seat within speaking distance of another resident. Start with a smile. You never know where a casual comment may lead. We all crave conversation. In most cases, it doesn’t diminish with age. In sharing their stories, a senior has a chance to relive their experiences here and now, rather than in the recesses of their memory. They matter to someone who wants to know who they are.
As for your mom or dad, perhaps they will gain a new friend out of your simple outreach. Maybe your dad was a pharmaceutical salesman, too. Maybe your mom was an I Love Lucy fan, too. Common experiences can serve as a firm foundation for a friendship. You’ll feel better knowing she’ll have someone to “hang out with.”
You might benefit in other ways too. Widening your circle of older acquaintances might result in practical advice you can put in place in your own life. And when you least expect it!
Take that lady mentioned above, the one with the glasses. A woman visiting her father, who was a writer experiencing a string of rejections, struck up what she thought was a casual conversation with the unassuming senior. As she wheeled her father toward the elevator, she offered her arm to the old lady hobbling beside her. She learned that the woman had been an accomplished illustrator of children’s books in the 1960s and ‘70s.
“Oh, I tried writing children’s books,” our visitor replied.
“And what happened?” asked the woman.
“I gave up.”
“Well, you must start again,” was the advice offered.
And so she did.
So, look around. At the very least you’ll break up the monotony of another human’s life. You never know, you might hear about a life of accomplishment. That Asian gentleman by the window, he was the youngest in a family that emigrated from China. Inspired by parents who believed in education and excellence, he went on to medical school and opened his own neighborhood practice, holding off retirement until the age of 82.
And the friendly gentleman in the wheelchair — after a career as a cameraman in Hollywood studios, he opened a successful store specializing in nuts and fine candies. It flourished for years.
Notice someone, because you never know where it will lead.
We probably don’t have to tell you that those with elderly parents are more prone to anxiety. The root of anxiety is unexpected changes, and the health of seniors can change suddenly. Caregivers are also working hard to balance multiple priorities, and often feel stretched to the max. Addressing severe anxiety will require help from a doctor or therapist, but the tips below will give you some tools that you can use on your own to get to a more relaxed, peaceful state.
1. Do something you enjoy. Yes, we know you don’t have a lot of spare time. But there’s much you can do to make life more pleasant in the bits of time you do have. A ten minute walk on a nice day can work wonders, especially if you make a point of being in the moment and enjoying it. Another thing to do that adds virtually no extra time is to listen to your favorite music while you’re in the car, at your desk, or doing chores. Also, try to squeeze in time for your hobbies. Even spending just an hour a week, or one day a month, can help lift your mood and give you an outlet.
2. Try meditation or breathing exercises. Simply taking a few minutes to focus on your breathing has more of an effect than you might think. If you find your anxiety rising, stop and take some slow, deliberate, deep breaths. This basic technique should help, but you can search online for more breathing exercises to get further benefits. Meditation or prayer can have similar advantages. Don’t worry if you think you don’t know how: meditation can be as simple as taking the time to pay attention to your breath and the present moment. You don’t have to be an expert.
3. Focus on nutrition and exercise. When we’re busy, taking care of ourselves can be one of the first things to go. But sticking to healthy routines goes a long way to staying on track in life. If you find that in your stress it’s hard to say no to fatty or sugary comfort foods, start not by cutting back on the things you crave but by adding healthier options into the mix. Have a piece of fruit as a snack or a salad along with your dinner. You’ll likely find yourself wanting less as these additions help curb your hunger, and as you develop a taste for healthy choices you’ll pick them more often. As for exercise, even a walk and a quick stretching routine can make a difference.
Addressing your anxiety is not just about helping you feel more calm and peaceful, but about helping your loved one as well. Your parent is probably picking up on your stress, even if you think you’re hiding it, and they themselves feel more stressed in turn. Taking a little time for yourself to follow these steps will benefit not just you, but everyone around you.
For additional tips, check out our post on caregiver stress.