I’m sure some of you reading this are on a “couple” of medications for various ailments (love that word from my Grandmother.) For many of us with Alzheimer’s we seem to be on a cocktail of meds – morning and night – pop – pop. We are reaching as far and wide as we can to find that special combination of prescriptions, herbs and vitamins to keep this ugly disease at bay. I’ve talked in past posts about my reluctance to take any Alzheimer’s meds as they will not cure the plaques and tangles going crazy in my brain and there can be nasty side effects. As I said last month I started on the Exelon patch (lowest dose) and so far I’ve not experienced any serious side effects. Now, that’s not to say there haven’t been problems. According to Tom I had a few bad days around my 14th dose. I think he referred to me as the “Witch of the East” and that was kind. We’ll see where this takes me as I will need to double the dose soon – my Little Pretty.
This is my new way of thinking – what’s best for me and Tom. If chewing his head off is what I’m doing then there is no benefit of the medication. We can not make memories with tension and let me tell you……..every household with an Alzheimer’s person in it has tension. I am still somewhat able to keep it together but life can be rough. Despite all this I am so thankful for Tom and my wonderful friends and neighbors. Some folks still don’t get it but that’s OK – I just ignore their remarks and love them just the same. I’m thinking if you do XYZ like me maybe YOU too have Alzheimer’s, but I don’t say that.
On a positive vacation note I believe we may be able to manage our trip in May. I had to hand over the planning stage Tom – not my thing anymore and that makes me sad. Due to so much driving we decided to fly and limit our trip this year to New Mexico and Sedona, AZ. Next year we will be able to visit some family and friends further west.
At our monthly support group we had a little discussion on what a support group is and what its purpose is SOOO…. I looked up the official definition:
What a support group is –sup•port group
noun: support group; plural noun: support groups
a group of people with common experiences or concerns who provide each other with encouragement, comfort, and advice.
In a support group, members provide each other with various types of help, usually nonprofessional and nonmaterial, for a particular shared, usually burdensome, characteristic. Members with the same issues can come together for sharing coping strategies, to feel more empowered and for a sense of community. The help may take the form of providing and evaluating relevant information, relating personal experiences, listening to and accepting others’ experiences, providing sympathetic understanding and establishing social networks. A support group may also work to inform the public or engage in advocacy.
We have an awesome and vocal support group and wonderful volunteers that facilitate. Most months I feel like I’m sitting down with friends to chat – how wonderful is that?? Because I am so vocal and opinionated (ya think)? I end up talking too much so one of my goals for 2015 was to ZIP-IT. This did not work for the January meeting so I’ll try to start in February. Speaking of support groups there are so many options for Care Partners/Givers from support groups to classes to books to counseling but those of us with this disease are still looking for couples counseling and a group just for those of us with Alzheimer’s. I’m hoping one day soon this will happen. You know who you are – can you help??
I’m very excited as I met a new Alzheimer’s “friend” from a Face Book site called “Memory People.” He has Younger On-set Alzheimer’s, is 46 years and was diagnosed about 2 years ago. He has 2 older sons not living at home and two beautiful daughters age 12 and 9. His wife still works and is a few years younger than he is. We are able to chat about our disease and I now have a better perspective of younger onset Alzheimer’s. He lives in a rural area and gets bored like me. He has made me realize how lucky I am that I live in Williamsburg where I have access to my support group and our own chapter of the Alzheimer’s Association. I am able to attend monthly support groups, volunteer, raise money and form new friendships. For those of us with Alzheimer’s this type of participation is so needed. You can not sit around waiting for the cure – you need to be involved.
I also feel lucky that I can call any of the volunteers when I’m down or have questions. This is also true of the Riverside Center for Excellence in Aging and Lifelong Health (CEALH). These are the great people who did my initial testing and hooked me up with the Alzheimer’s Association. ALL of these wonderful people LOVE to hug………..that is so important to me. Nothing like a great hugger and nothing like human contact!
Please check out the latest local Alzheimer’s Association newsletter – I was pleasantly surprised as I’m sure my walk team will be – what an honor.
Please remember, as I’ve said before, that Alzheimer’s is NOT an old person’s disease. Read all you can, take care of your health, exercise, keep active and find peace in your life.
Thank you for reading. The best thing you can do for me is to pass my BLOG along to friends and family – I’ve said before that you never know what goes on behind closed doors. Helping just one person would be wonderful. Also remember to +FOLLOW to get an email notification when a new BLOG entry is made.
Stay warm – only about 8 – 9 weeks until Spring!!