Dementia Caregiving Lessons

October 16, 2011 Posted by paula

I was a caregiver for my Mother for several years prior to her death in 2008.

Dementia Caregiving was one of the hardest things I have ever done. It was my job to take care of my mother every day while she slowly forgot who I was.

I had to watch her experience pain from medical procedures and not understand why the Dr. was making her hurt.

I had to watch her struggle to remember her last name–Jones. And not know who her daughters and grandchildren were.

I had to endure her thinking that I was trying to steal her home and her money all while smiling and making her feel loved.

It was my job to remember why I was doing all this (and more!) and to continue to take care of her as long as I was needed.

If you are caring for a loved one with dementia this blog will encourage you. It will give you the information you need to make informed decisions, to make good choices, and to keep going, day after day after day…while your loved one slips away.

Welcome to my blog.

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One Last Visit…

January 24, 2012 Posted by paula

Dementia is such a sad thing to deal with. As time goes by the dementia patient slowly forgets many things. One thing they forget is people, people who at one time in their life were very dear to them.

It is hard to handle when your mother (father, aunt, grandmother, friend, etc.) looks blankly into your eyes and says, “Hi. Nice to meet you.” But they don’t really know who you are.

For this reason I believe it is so important for early stage dementia patients to have one last visit with close friends and family members. Before the recognition slips away, before it is a struggle to remember who the person is to them, before the friends and family members have to face the sadness and grief that accompany those blank stares. One last visit…

I know your life is hectic. I know finances may be tight. But find a way to take that trip or to send your loved one on the trip with someone to meet them on the other end. Plan a family reunion. Plan a friend reunion. Let your loved one spend time with all those precious people one last time.

They will all appreciate it.

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Dementia and Dehydration

January 17, 2012 Posted by paula

Dehydration can worsen dementia symptoms. It’s symptoms can even mimic dementia.

A dementia patient may not recognize the signs of thirst so it is up to the dementia caregiver to see to it that they drink enough water throughout the day.

Here is a blog post from my other blog about the importance of drinking enough water:

Get Your Insides Wet!

Important advice to follow!

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The Dementia Discussion

January 14, 2012 Posted by paula

It is time to have The Discussion.

The signs are there. They’ve been there for awhile, but now they can no longer be ignored, explained (hoped, wished) away. There is no denying that your loved one has dementia.

You may not know what form the dementia comes in. You may not be able to pinpoint exactly when it began. And, quite possibly, your loved one will vehemently deny the facts that are so obvious to you and your other family members and friends.

But it is time to have The Discussion.

It is never easy to approach someone you love and broach a difficult subject. Telling someone you love you think they have Alzheimer’s disease, dementia, severe memory problems, or whatever other description you choose to use may sound to them like you are saying they are going crazy, are losing their mind, can no longer take care of themselves–ever, may die soon.

We tend to deny our own sicknesses as long as possible. We don’t want to face the reality of being sick, in this case, incurably sick. Sick to the point of no longer being able to make any decisions for ourselves. As bad as dementia seems to you, the caregiver, its magnitude is multiplied many times more for the dementia patient.

The Discussion won’t be easy.

Choosing a time when the dementia patient and you are relaxed, comfortable, and well rested will help. Having some supportive, understanding friends and/or family members present will help. Light refreshments and drinks (non-alcoholic) will help. An afternoon tea, just another quiet time visiting with Mom, or Dad, or your Spouse…

Just another Discussion.

I can’t tell you what to say. Your situation, the degree of severity of the dementia symptoms, the personalities of all involved, the underlying problems the dementia symptoms have caused (financial problems, health problems, relationship problems, etc.) all factor in to the words you must choose.

Be gentle. Don’t accuse. Make sure they know that you love them; let them hear it in your words, your body language, and the tone of your voice. This will not be a time for anger. It is a time for understanding, for support, for help.

They will be needing your help. Today and for many days to come. Be there for them. Care for them.

The Discussion is only the beginning.

And there will come a day when they won’t even remember it…

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The Dementia Patient and the Emergency Room

January 3, 2012 Posted by paula

We  hope you never have to experience a trip to the emergency room with your loved one. We experienced way too many!

One of the symptoms of dementia/Alzheimer’s disease can be poor muscle tone. This can cause the dementia patient to become unsteady on their feet. While a fall may not necessarily become an emergency the likelihood of an elderly person being seriously injured in a fall is very high.

So, if your loved one does end up in the ER, because of a fall or any other reason, what information do you need to have readily available?

  • A current list of all medications the dementia patient is taking, both prescription and over the counter medication, along with the dosage and frequency taken. If you don’t have these written down, grabbing all the bottles as you rush out the door on the way to the hospital is an option, but make sure you don’t grab medications that they aren’t actually taking.
  • A copy of their insurance card and their Driver’s License or State ID Card.
  • A copy of their current Medical Power of Attorney documents including any Advance Directives they may have had prepared.
  • A written copy of their medical history is also very helpful.

This information is also useful for a planned hospital stay so it is a good idea to gather all of it together and keep it in a file. That way it will be all together when you need it.

For even more information on helping a dementia patient while they are hospitalized join our membership site Dementia Caregiving Lessons. You will find many valuable articles, tips, forms, special reports, and encouragement that will help you as you care for your loved one with dementia. $1.00 for the first week then only $5.00/month for the next 6 months. Check it out now!

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The Dementia Patient’s Taxes

January 3, 2012 Posted by paula

Do you know where to find the dementia patient’s last year’s tax return? If you will be helping your loved one to prepare their taxes, now is a good time to locate the information you will need. Last year’s records may be hidden in some unusual place so start now to search for them. If you find them quickly you will be ahead, but if they are well “hidden” you will be glad you didn’t wait.

Start watching the mail for W-2′s, 1099′s, interest rate statements, charitable deduction receipts,  and any other tax related information. Put them all in a secure place.

Even if your loved one’s taxes will be prepared by a third party, they will still require all of the relevant papers and proof in order to accurately prepare the return. Having it organized early will save time, money, and stress.

If you don’t think your loved one is required to file a return do a little research anyway. There are tax credits available for various circumstances that they may qualify for. If they are eligible for these credits they must file a return to recieve them.

A little planning and preparation can make this task much easier.

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The Dementia Patient and Goal Setting

January 2, 2012 Posted by paula

Setting goals with a dementia patient may seem pointless. “They forget everything,” you may be thinking. But having a goal, something to aim for, can add fulfillment and excitement to the dementia patient’s life.

Long term goals may not be practical, but setting a goal to get all the laundry folded by noon or to finish the jigsaw puzzle you started last week are completely doable.

Make sure to keep the goal simple with one step descriptions. Adding too many aspects can become confusing for a dementia patient. Instead of a goal to declutter the entire downstairs, try setting a goal to declutter the junk drawer or the hall closet.

Even if the dementia patient does forget what you are doing halfway through the project knowing that you have set the goal will give you a direction to steer their thoughts in. Avoid using the word “remember”, though, as they most likely will not remember. Each time they get distracted or wander away invite them to come help you as though it were the first time you have asked.

Much of life gets put on hold while caring for a dementia patient. Set small goals. Tackle small projects, one at a time, and both you and your loved one will be richer for it.

 

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The Dementia Patient and Cold Weather

December 15, 2011 Posted by paula

As the weather gets colder it seems like common sense to grab a jacket or a coat when heading outdoors. But a dementia patient may have lost the critical thinking skills to make this judgement call.

Just as you would remind a young child to bring his coat you must also help the dementia patient to dress properly for the weather.

Help them to dress in layers so that if they do become warm it will be easy to remove a layer or two, but keep in mind that someone will need to keep track of and possibly carry those layers so plan accordingly.

Also, be aware that when removing some of their outer clothing the dementia patient may not know when to stop. Guide their actions to save them and yourself from possible embarrassment.

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Dementia Patient Behavior and The Exit Strategy

November 22, 2011 Posted by paula

A dementia patient’s behavior can be unpredictable. They can go from happy to sad to angry to confused in a matter of minutes. Dealing with these sudden shifts while in public can be embarrassing and difficult.

Staying home is one option, but this only works part of the time. There will always be Dr. appointments, errands, grocery shopping, etc. that MUST be done. So how do you handle a public outburst?

The best way I found to deal with the possibility of dealing with this kind of behavior was to plan an exit strategy. Before we went to a certain place I would figure out a way to make a quick exit if necessary.

Doctor’s offices were a little more easy going since most people there understood my Mom’s condition or at least understood that she must have some kind of medical problem or she wouldn’t be there.

At  the grocery store I’d get the perishable items last, that way if I was forced to abandon my cart at least I didn’t have to leave behind food that would go bad if it was left out. Also, keeping shopping trips very short helps.

At a restaurant I’d make sure the wait staff knew my Mom had dementia. This is easily done by either distracting the dementia patient while you order for them or simply by discreetly telling the waiter that your loved one has memory problems and to please address questions to you. If you frequent a certain restaurant the staff will get to know you and be able to help make your meal more pleasant.

At social functions be sure the staff knows about your loved one’s condition and explain that you may need to make a quick exit without saying goodbye.

While the dementia patient’s behavior may still be unpredictable and potentially embarrassing having a plan to deal with it in public can make caregiving easier.

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Traditions & The Dementia Patient

November 6, 2011 Posted by paula

Traditions–those special things you do every year that are so important to the way you celebrate life, those things that make Thanksgiving, “Thanksgiving” or Christmas, “Christmas.” Those things that seem so unimportant to a person with dementia.

While you have years of fond memories of the “right” way to celebrate a certain occasion your loved one with dementia may struggle to remember what they ate for breakfast this morning or which door leads to their bedroom. Elaborate light displays may cause confusing shadows to them. An all day cookie baking marathon may just be an irritating disruption to their routine. And all those people! Confusion, anxiety, fear…

So, the question may be, “To celebrate or not to celebrate?” And the answer is as individual as you are.

Here are a few things we learned about celebrating special occasions when our Mom had Alzheimer’s. We hope they help to make your holidays more memorable.

  •  Keep things simple. Participate in only one or two major events during the holiday season instead of one every weekend.
  • Fewer gifts not only cause less strain on the budget, but they also cause less confusion for the dementia patient.
  • Avoid large crowds. The noise, the movement, the strangers can all cause anxiety for the dementia patient. And to a dementia patient, even “familiar” people may be strangers.
  • Keep meals simple. Spending all day on your feet preparing the perfect feast may seem enjoyable at the time, but if the dementia patient chooses to not sleep that night you could be miserable the next day (or two or three.) Remember that you always have to consider how the dementia patient will react to situations and make your decisions accordingly.
  • Make new memories. These may be some of the last holidays you get to celebrate with your loved one. Enjoying their company and finding ways to make them happy will be much better than lamenting what you don’t have.
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9 Things to Say When a Friend Offers to Help

October 28, 2011 Posted by paula

Dementia caregiving requires a lot of time, adds extra expenses to your budget, drains your energy and your emotions. When a friend offers to help it can make you feel good knowing someone cares, but then you may feel guilty because you don’t actually want to ask for their help.

Get over that feeling. You will need help!

The next time a friend offers to help, or even for those who have offered in the past and you didn’t know what to tell them you needed, here are 10 suggestions:

  1. Ask them to bring you a meal or have one delivered on an especially busy day. Or even better, ask them to bring several meals that can be frozen so that you will have one you can just thaw and eat when you need it.
  2. Ask them to run an errand or several errands for you. All those little stops with a dementia patient along can become so difficult and tiresome.
  3. Ask them to come over for a visit. Maybe bring a movie and some snacks (avoid popcorn if the dementia patient has swallowing difficulties.) You may not get much visiting done with the interruptions, but just having a friendly face around can brighten your day.
  4. Ask them to come over to entertain the dementia patient while you work on a project.
  5. Ask them to stay with the dementia patient while you take some time off. This could be a quick trip to a coffee shop or the library, a day at the spa, or an overnight get away. All three would be invaluable to you.
  6. If they have more money than they have time, ask them for gift cards to the grocery store, your favorite restaurant, or some place you go to frequently. This may seem an awkward thing to ask, but for some people it really is easier to give money.
  7. Ask them to help you with chores. An extra pair of hands can come in handy.
  8. Ask them to buy a small gift for the dementia patient. A fresh cut flower, a new blouse, or a book with big pictures of a former hobby can be great spirit boosters.
  9. Ask them to just be there for you–listen to you talk, listen to you rant, listen to you cry, give you a hug. Sometimes all you really need is a friend.
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