Don’t forget November is National Caregiver Month. Be thankful for the caregiver in your life.
On September 20th, I will be mom’s live-in caregiver for a whole year. I should specify here that I’ve been her 24/7 caregiver for a year, but I have been taking care of her from separate houses for about 10 years. That’s a big one for me. I never thought I would survive it, but here we are happy and whole…for the most part. We still have bad days and good days, but how I handle it, that’s a whole new ball of wax.
I decided to make a list of the top 10 things I have learned about Alzheimer’s Disease and being a caregiver this year. I hope you will stick around because there is ALOT left to learn.
10 THINGS I’VE LEARNED ABOUT ALZHEIMER CAREGIVING THIS YEAR
10.) The signs and symptoms of Alzheimer’s and what to be looking for. I realize now that my mother had been showing the signs for years, but we just didn’t recognize them. Here is a post I wrote about this: 10 SIGNS OF ALZHEIMERS/DEMENTIA
9.) The lengths at which a person will go to hide their symptoms. This makes # 10 especially hard. Even though we’ve moved into full- on caregiver mode, mom still tries to hide her symptoms from me at times. OUTPLAYED…AGAIN
8.) How hard it is to diagnose Alzheimer’s. We’ve been to 2 primary care doctors and a Neurologist. Mom has had a physical, family history, MRI, clock test, the sage test and several other tests, but there is no clear cut diagnosis. They all agree that she is suffering from Alzheimer’s, but there is NO ONE test that will diagnose it. These tests were all to rule out things such as a brain tumor or depression etc.
7.) Patience and Understanding. This is a huge one. You really have to slow down. If you try to talk to an ALZ patient the way you would talk to anyone else they are not going to get it. Speak loudly but don’t scream, slow your words way down and use as few words as possible to get your point across. Long-winded stories are lost on them because by the time you get to the end…they have already forgotten the beginning. Spend more time listening to them than talking to them.
6.) Sundowning. Routine and schedules cannot be stressed enough. It makes life go so much smoother. When mom gets up and does the same thing every day, she isn’t afraid as much of what’s coming next. Instinctively she knows. Keep important things for morning time because as the day goes by so does their mental function. They become dull and lifeless in the evenings. One way I have found to help combat this is to leave all the lights in the house. Make it as bright as possible.
5.) How important is a POA (Power of Attorney)? This is a must for any family caregiver to have. As their mental function decreases so does the ability to make important health and financial decisions. If you wait too long then their mental capacity deficit may mean it is too late to sign one. At this point, you would have to hire a lawyer, go to court and request guardianship. This costs thousands of dollars and takes precious amounts of time and it ultimately up to a judge. GET THE POA: hundreds now vs. thousands later.
4.) Keeping track of everything. This is so important you must stay organized. In our house, because I must also deal with my own diagnosis of Felty’s Syndrome we are both frequent visitors to the Dr.’s office. New tests, medications, and treatments. I have several calendars and write everything down as well as file things in a filing cabinet.
3.) As Alzheimer’s progress’, you have to understand the fear of abandonment that goes along with it. If I am out of mom’s sight for very long she will come and hunt me down. She’s not being nosy she is just afraid of losing me. It can get frustrating but if you look at your loved ones face and see the look of happiness when they find you it makes all those frustration dissolve, at least for me.
2.) Hiding your own feelings and emotions. This is one of the hardest as a caregiver, you will go through so many emotions: sadness, frustration, anger and guilt to name a few. Whatever way you feel your loved one will mimic those emotions. If you are agitated and frustrated they will be too. Likewise, if you stay calm and keep a cheerful tone in your voice they will mimic that too and life will be so much smoother. Learning to be a good actor/actress is a must. ALWAYS WITH LOVE
Drum roll please….okay maybe not, anyway, the most important thing that I have learned.
1.) I have learned is that I AM NOT ALONE. Lean on family and friends when needed, delegate what you can use Social Media (it works for me, as you can see). There are also great organizations both local and online that can be a huge help. I have made a list of these websites below. This is not a “one person” job. Just like with a child as the saying goes…”it takes a village” seems appropriate. Ask for help when you need it. Don’t make others guess your needs, be specific. Take care of yourself too!
and as always…
Appreciate the good, laugh at the crazy, and deal with the rest.
I love you, momma!