I’ve once found my mother-in-law reaching for a slice of cake from our garbage can, as she was leaving the yard to go for a walk. Luckily, I was there to stop her from actually eating it and helped her get back inside. When I asked her why she would take that cake, she looked at me with a heavenly smile on her face, a smile much like those honest, angelic faces our kids make, and said “I was in the mood for something sweet, and you always make the best cake”. She didn’t know better and my heart tore right there and then.
A year and a half prior, she was diagnosed with progressive Alzheimer’s.
The street we live on is a cozy little space with no more than twenty houses; we’ve been there for our weddings and funerals, our kids crying for the first time and starting school. We’ve been holding each other’s hands in divorce, affairs, family tragedies and happy endings. In essence, life on our street is filled with love, laughter, secrets, gossips and friendship – everything about living here is colorful, perplexed and lifelike – just as we all are. And, after all these years, we are no longer just neighbors – we are family, with each other in sickness and in health. In a situation like mine, that helps a lot.
What is Alzheimer’s?
Alzheimer’s is the most common form of dementia, causing problems with memory, thinking and behavior. Alzheimer’s causes a memory loss so severe that it disrupts most people’s intellectual abilities, interfering with their daily life. The disease accounts for 60 to 80 percent of dementia cases. Alzheimer’s isn’t a normal consequence of aging, although it is most commonly linked with the elderly. Symptoms usually develop slowly and get worse over time, and currently – there’s no cure, even though research is ongoing.
A caregiver’s responsibility
With hospital stays getting shorter, more care is needed at home. While medication may help a little, every other form of caregiving boils down to having a lot of patience, love, understanding (of both the disease and the person having it), rationalizing the problem and being straightforward about it.
In our community, women are the traditional caregivers for both children and the elderly, so it’s important for women who take up this role to rationally approach it in order to find balance.
A year and a half ago, my mother-in-law came to live with us due to her diagnosis; at first, her state wasn’t as difficult to bear, but, in time, it started getting worse and we had to regroup. She joined our family, consisting of her son and me (we’re both employed full-time) and our two kids, her grandkids.
A novelty to all of us at the house, ALZ wasn’t really something we had ever dealt with. At first, it was all a game of guess-and-score but we’ve gradually managed to find a system that works, fortunately.
If you have an ALZ situation at home, here are a few things that may help you get more organized and lead a quality, undisrupted life (as much as possible):
Know your “enemy”
The first step to knowing what to do, how to act, and what measures of help to rely on is to gather as much information as possible about the affected person’s diagnosis, and make sure you are an integral part of their care and education team. If you are doing research online, be cautious; limit your online research to truly reputable websites and don’t trust everything you read. Ask the MD for recommended sites and reading material, and talk to them about the severity of, in my case, the in-law’s state. Apart from general reading, your MD is the best person to talk to about this condition.
Understand that it’s draining
Since you cannot change the circumstance you are in, change your attitude towards the problem; at first, it’ll seem like your whole world has crumbled and that you’ll never get back up. Stretched between my mother-in-law, the kids and their needs, my husband and myself, every new day at the house felt like dying. However, I didn’t – the situation has only made me stronger and had me think harder of ways to make things easier for myself.
To live through this – please understand everything about caring for a person with ALZ is very emotionally draining, as it is physically and mentally. You’ll be triggered often and on the verge of breaking, but accepting the situation is challenging will make things easier.
Build a support system
One of the unwritten rules of suburbia is to be there for the neighbors when you need them (and vice versa) – whether it’s in the middle of the day or night. You can call in a state of an emergency, and they’ll rush to your house with their uncombed hair and their unmade faces, in their pajamas and slippers. They’ll come and help, and that’s what matters.
Tell a few people from your neighborhood (or everyone, depending how tight you are) of your situation and ask them to help when they can. They can sometimes help sit in when you are at work, help the ALZ person find their way home if they get lost, or just be around the person with dementia so there are always familiar faces around. A person who has a dementia problem may start panicking and get scared when they are surrounded by faces they don’t recognize, so relying on people you can trust is (almost) crucial.
Talk to your children
Even without being told the facts, children will often be aware of difficult atmospheres and tensions. To avoid confusion and to make things slightly easier for everyone, talk to your children about the situation and explain what’s going on.
While you don’t have to use medical terms or get into intense elaborations, it can be reassuring for them to understand what the problem is. That way, they’ll not only be able to help, but they’ll also get an education on the disease. Further, the more they understand the situation, the more love, patience and effort they’ll invest into the relationship with the affected person. Additionally, with the kids realizing their grandparent’s behavior is a part of an illness, they’ll feel a relief knowing it’s not directed at them.
Talk to your boss
With a problematic situation at home, it won’t be a surprise if your focus and commitment at work decrease. Before you get into trouble, talk to your superiors about the position you are in. See if there is a possibility of cutting hours or an extra day off. Also, if your job entails changing shifts often, ask your boss to fix one shift you’ll be working in. That way you’ll be able to set a schedule that will be beneficial for further organizing all the chores at home.
My personal advice is not to ask to work from home, because you’ll go nuts; focusing all of your energy on the problem and having it in front of you 24/7 will additionally drain you. Going to work will be a stress relief (as much as possible), as it a change of scenery and circumstance.
Ask your spouse to help, regardless of whose parent is affected. It is not up to you to have the entire burden on your back. If your kids are grown up and responsible enough, ask them to help, too – they can go for a walk with their grandparent, read to them, watch their favorite shows together, take them to their friends’ house – anything that will instill the diseased with pleasant emotions.
Mind the tone
It is very important for everyone at the house to understand that ALZ isn’t a form of planned behavior, but a sickness. To a healthy person, repeating one and the same sentence or question may be very frustrating, leading to stress and rude behavior.
Everyone in your family should agree not to raise their voice at the affected person or harm their dignity in any way; telling them they are stupid, crazy and annoying, mocking them or refusing to answer their questions (even if they’ve asked it a millionth time that day), you’ll be hurting them more than the disease does. Watch your tone and behavior, please.
If it gets impossible to be the primary caregiver, hire help. Even, if your budget allows it from the get go, see to hire trained help that will aid in this situation. A person can come two or three times a week and provide any assistance your affected ALZ person needs. With amazing home care in San Francisco, my family has managed to work things out (as much as it can).
Consider a tracking device
There is a very arguable morality behind even suggesting something like this, but it’s very effective. If your affected person’s dementia is getting out of control and they are losing focus, leaving the house in the middle of the night, wandering around the neighborhood or hiding around the house or elsewhere, putting a tracking device on them (much like those you’d put on a pet), is very helpful.
Take care of yourself
Whenever you can, try to take care of yourself as much as possible.
Sleep, try physical activity or yoga for de-stressing, look not to miss pampering sessions or any type of soul food you’ve enjoyed – movies, galleries, theatre. Seek to see your friends often outside the house and talk of things other than ALZ. Eat your favorite food and enjoy it. Hug and kiss your kids as much as possible, they are the best therapy. Find solace in your husband, too. Join a support centre for people with ALZ (you can do this online or find one in your community) and share experiences with people going through the same. It is painful and unfair, the whole thing – but don’t forget to love yourself.
You didn’t ask for what’s happening, but you can deal with it, no doubt. Have faith in your strength and resilience, and be smart and organized with your game plan. You’ll get through it just as I have, I promise.