Yes, it has been a while since my last entry, but for good reason… well, you know, it’s a balancing act and I am sorry. But here’s the skinny on me and my demented mom: I was settling into life in Phoenix, starting a new job and working to get my mom access to Arizona’s version of Medicaid, otherwise known as ALTCS. The good news: we got it and will soon have more help! Thank you Larry Shafer!
A huge relief for my dad and I — he was reaching his breaking point, it was so painfully clear. He suffers from the effects of caregiving… as most caregivers do: sadness, shaky hands, more gray hairs. This disease destroys many lives. I mostly struggle with my emotional detachment from my this demented woman. I am trying. I try to think about the fact that my time is limited. I try to hug her and hold her hands. My mom has her moments. They seem to be getting worse. Her challenging behavior tests my patience and I struggle to hold my tongue. I hate that part. I hate being that person and becoming cross with her because she can’t help it.
One thing I’ve learned about coping with this disease is that you need help — and a bottle of wine. I’ve asked some of my friends to give me their tips for coping with a demented parent. Out of respect, I won’t name names, but I hope you find these bits of wisdom to be helpful — and of course, if you have any nuggets of information you’d like to share please post a comment!
>Immediately make sure that their belongings are in a trust or in your name. That way Medicare & Medicaid can’t take it from you/them. See an elder care lawyer. Find out what you can do together with the person while they can still make some decisions. Massachusetts has a 5 year law. Some are only 3.
>I wish my mom had gotten into a support group for herself. Not really her thing, but I wish she had.
>I wish I had not been in so much denial myself. I did a lot of “Well that is so far off”, “My mom isn’t like that”, “She is fine and will be for a long time”. Now I feel like I am under the gun. I didn’t deal with the future for her. I just led my life as if I only had a short amount of time to live and in a way everything suffered. I put pressure on my career and relationships because I needed them to be secure before my mom got bad and in the end I think I appeared desperate (because without realizing it I was) and that is never attractive to anyone, be that a relationship or an employer
>Figure out all the stake-holders- everyone that could help out, get in the way, or try to help out but end up getting in the way.
>Figure out a good candidate for Power of Attorney as early as possible, and make sure that the people in #1 are cool with #2.
>Go see an elder care lawyer. This is not something that most people are equipped to do, and is generally worth the expense. Assets require protection, and an elder care lawyer is generally prepared with many shelters to help make the transition to Medicare easier.
>Seek care for yourself, either in the form of a support group, or therapy, or both, but you covered that.
>Start coordinating your loved one’s life in such a way that he/she no longer needs a car. The sooner this happens, the safer everyone is.
>Start EARLY on baby-proofing your loved-one’s living area. Anything endangering to him/her or others needs to be gotten out of there BEFORE he/she is in a state where it really becomes an issue. This is a lengthy, unhappy process, but well worth it.
Thanks guys. You’re amazing and I miss you!
I was browsing your blog, and even clicked on your facebook page. Being an artist myself, your image there was very telling. My husband and I began doing sandwich family in the 80’s with ailing parents. We did not have dementia, but did have loved one with Parkinsons.
One of the best pieces of advice we ever got was from a wonderful nun who was doing a seminar and she advised,
“Never do 24/7 yourself.” Get folks to assist with basic needs because your parent needs you to be emotionally available for them, and if care needs are overwhelming, you will not be able to be available in the special way that only you can be.
It also made me realize that I had to continue with other aspects of my life, like your own needs. Denying them is not fair to you and your health. Even though things can be overwhelming, you have to take time for yourself.
We made the mistake of spending lots of time caring for a loving grandmother, and during that time my husband’s father dropped dead.
We cannot know what each day will bring. So remember everyone in your life is important, esp yourself.
Hang in there.
I think about you and your situation alot. Thanks again for taking the time to blog. You have been an encouragement to me even though we are in very different circumstances. I just finished reading “Still Alice” thanks to you. Wow. I come to your blog as a resource for serious information.
In some strange way blogging has been an emotional outlet for me and helps me cope. I know I’m back to the “easy” stage with my Mom and I’m coasting some. At least there has been a six month breather between my dad’s death (Alzheimer’s/congestive heart failure) and my mom starting on Alzheimer’s meds this spring.
Thank you so much for your kind note. Wow, I am so happy that I can be of some help. Your situation is incredibly difficult and I am very sorry that you have to deal with this crushing disease again. All I can say is stay strong and try to take time for yourself whenever you can. You must, it’s so important! Good luck and you and your mom are in my thoughts.