The Long Goodbye - Primary Caregiver for love one with Alzheimer’s

“I am a Caregiver”. There you go, “straight off the bat” as they say, I write this article (the first in a series) in my role as a Primary Caregiver first and author second. At present I am the primary Caregiver for my elderly mother who is suffering from the advance stages of Alzheimer’s disease. It is desperately cruel disease (most are, I know) in that it robs people (by and large) of their dignity and their independence at a stage in life when they need it most.

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In the United Kingdom, the Alzheimer’s Society claimed in a recent survey that over 750,000 people suffered from Alzheimer’s and related dementia problems. In the United States it is calculated that an estimated 4.5 million people suffer from Alzheimer’s and that this figure has doubled since 1980.

Further alarming statistics highlight the fact that it is possible that in the US alone, the number of people suffering from Alzheimer’s could more than double to between 11.5 and 13 million sufferers by 2050.

Alzheimer’s disease is what is described as a progressive disorder of the brain that gradually destroys a persons’ memory, ability to learn, reason, make judgments, communicate and carry out daily activities. As the disease progresses, sufferers may also experience changes in their personality and display such behavioral changes ranging from anxiety, agitation or suspicion right up to and / or including delusions and hallucinations

Although there is currently no cure for Alzheimer’s, new treatments are on the horizon as a result of accelerating insight into the biology of the disease. Research has also shown that effective care and support can improve quality of life for individuals and their caregivers over the course of the disease from diagnosis to the end of life.

Considering the long term implications for Alzheimer’s sufferers, the hidden sociological impact will in reality be born on the shoulders of those who will be caring for the sufferers for it is indeed a bittersweet irony that those who care for the sufferers in reality suffer more than the sufferers do themselves.

This fact in itself has been largely responsible for another survey finding recently and that was the fact that Americans are equally afraid of caring for someone who has Alzheimer’s as much as they are of developing the disease themselves. Approximately 1 in 2 American adults are more apprehensive of caring for partner or loved one who has developed Alzheimer’s. Just less than 1 in 5 American adults have indicated that they are more afraid of getting the disease themselves (17%).

The real problem from a Caregiver’s perspective is that no two people experience Alzheimer’s disease in the same way. As a result, there’s no one approach to care giving. Your care giving responsibilities can range from making financial decisions, managing changes in behaviour, to helping a loved one get dressed in the morning.

Handling these duties is hard work. But by learning care giving skills, you can make sure that your loved one feels supported and is living a full life. You can also ensure that you are taking steps to preserve your own well-being.

Caring for someone who has Alzheimer’s disease or another illness involving dementia can be very difficult, time-consuming, and stressful – (serious understatement here). Here are some more things a care giver can do to help the person with Alzheimer’s disease while also reducing the substantial burden that comes with care giving:

1. Stay Informed – Knowledge equals power. The more you know about Alzheimer’s disease or any other signs of dementia, the better you can prepare yourself to deal with problems that may arise.
2. Share concerns with the person – A person who is mildly to moderately impaired can assist in his/her own care. Memory aides and other strategies can be created by the person with dementia and the caregiver together. This is easier said than done I know but you have to give it a try. But, and this is a big but (no laughs here please) it is essential that you realize that you are probably dealing with a person who if they have any cognisance at all, will be in denial.
3. Solve problems one at a time – A multitude of problems may occur that may seem insurmountable at the time. Work on one specific problem at a time — you do not have to solve every problem all at once. As the saying goes “Success by the inch is a cinch, by the yard it’s hard” and in this case this has never been more true.
4. Use your imagination – One of the keys to handling this disease is your ability to adapt. If something can’t be done one way, try another. For example, if the person only uses his or her fingers for eating, do not keep fighting; just serve as many finger foods as possible!
5. Establish an environment that encourages freedom and activity within limits Try to create a stable, balanced schedule for meals, medication, etc. but also encourage activities that the patient can handle such as taking a walk or visiting an old friend. Remember, the person with AD is not the only one whose needs must be taken into consideration. You as a caregiver have needs and desires that must also be met. First, try and find some time for yourself. Even though this suggestion may seem like an impossibility, find some time during the week where you can have someone else watch the patient — be it a relative, friend, or neighbor — and do something for yourself.
6. Avoid social isolation – Keep up contacts with friends and relatives. It’s easy to get burned out when it seems like you have no one to turn to. Another way to establish contacts is by joining the Alzheimer’s Association or other such support groups. Talking with other families who share many of the very same problems can be reassuring as it helps you know you are not alone in your round-the-clock struggles.

Adult Day Care for Elderly Mom and Dad

When you first started working with your elderly mom or dad in helping them settle into their retired lifestyle, you exposed yourself to all kinds of services that can help take care of elderly citizens. If you feel your parent could use to be with people during the day but you are not able to be free to provide that support because of your job, the idea of an adult day care is often suggested as a solution to the problem.

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Of course the phrase “adult day care” can be upsetting because it only goes to reinforce the image of your adult parent becoming an infant and having to be treated as such.
So when you suggest that you work together to find a place they can spend time at during the day, don’t refer to it as an “adult day care” if you can. Immediately the senior citizen will feel that you are just “putting him away” somewhere so he won’t be a nuisance to you. And you don’t want him to get that idea.

But many seniors are open to going to a senior citizen’s center or to a church program for the elderly that serve the same function. The best way to find the right adult day care situation for your parent is for you and your elderly parent to take a tour of what is available locally and make the decision together. To do that, you will want to come armed with some pertinent questions for you to get some peace of mind about letting your mom or dad spend time there each day. Some questions to include might be…

• . Do they provide transportation to the different assisted care facilities in town? Does that transportation continue to run all day? You don’t want your parent going to the center and “getting stuck” there. If there is transportation, that wont happen.
• . Do they have qualified medical people on hand should any problem come up?
• . How many seniors are there on any given day?
• Too few implies that the center isn’t providing good service. Too many and your parent could get lost in the shuffle.
• . Do you provide food and beverages if the stay is all day? Are your food services sensitive to diet issues if your parent is diabetic or has other diet restrictions given to him by his doctor?
• . What are the costs?

Of course for your mom or dad, the activities that the day care center offers will be a big part of their willingness to go there. During football season, if the center just provides a place where elderly men can cheer for the game or have other sports programming available, that is a lot more fun for your dad than sitting alone in his apartment and watching those same sports.

If the day care center has a variety of activities that appeal specifically to each gender and then others that everyone can enjoy such as card games or puzzles, it could be an upbeat and fun place for your parent to pass the day. By spending some time there, you can get a feel for the friendliness of the staff and the general atmosphere of the center to determine if this will be a warm and welcoming place where your parent will have some fun and meet new people or a place where he will feel alone and out of place.

But if you can find a good day care center for your elderly mom and dad, it can take a big load off of your mind. And if you know he is having fun each day and getting out with people, you know that will be healthy for him and be invigorating so he will eat better and sleep better that night. And that solves a lot of problems all at once.