Rite-Aid has a new program for caregivers that I’m pretty excited about. Experts answer questions in an online chat format. For people who can’t attend the live chat, there is a transcript of the event. According to the email I just received, there are two upcoming chats:
Wednesday, December 3, 12-1pm EST
Get answers from Elder Law Attorney Vincent J. Russo on Elder Law, Special Needs and Estate Planning issues, and ask Social Worker Marion Somers PhD about topics ranging from home safety to senior-friendly technology.
Thursday, December 4, 12-1pm EST
Chat with a Rite Aid pharmacist about medications, therapies and interactions, and direct your questions on general caregiving to "Caring Today" editor Susan Strecker Richard.
You’ll need to complete your free registration as a member of Giving Care before joining the chats. I just did the sign up to check things out and it was quick and painless!
I’ve had a really bad run in with Lyme Disease and am still having some issues that are probably a result of some sort of Post Lyme Syndrome. (Vitamin D level of 13 despite taking multivitamins and gardening=major pain.) Anyway, because of the Lyme, I decided to watch Under Our Skin, a film by Andy Abrahams Wilson. One fascinating tidbit I found in the movie?
A researcher has discovered that seven out of ten samples taken from people who died from Alzheimer’s had Lyme DNA in them. Seven out of ten! He talked about the way Syphilis attacks the brain and how Lyme has some scary similarities. Some doctors and scientists think Lyme is the cause for several diseases with no known cause, including Parkinson’s, MS and, of course, Alzheimer’s.
Would it be worth it to ask your loved one’s doctor to test for Lyme? I’d say it couldn’t hurt, although at the point where it would turn into Alzheimer’s, it would be insanely hard to treat.
Have you heard about the correlation between Lyme and Alzheimer’s before?
It can be tough to choose the right gifts for anyone. However, finding Christmas presents for people with Alzheimer’s is really a challenge. When you are searching for gifts for your loved one, keep a few things in mind:
- Simple is best. Don’t look for new high tech gadgets that they won’t be able to use. Instead, consider toys and pursuits from childhood, like simple musical instruments or a paint set.
- Useful items are always a good bet. Clothing that is comfortable and easy to get on and off is a good option.
- Reprinting photos of your loved one’s parents and framing them with unbreakable plastic fronts instead of glass can be a great gift if he or she still has memories of them.
- No matter what you end up buying, don’t give more than two or three gifts total. Too much stimulation is a bad idea.
Do you have any tips for choosing presents for Alzheimer’s patients?
Creative Croppers is holding an all day scrapbooking crop on September 27th from 10 am to 10 pm at Good Shepherd School in Perryville. I’ve been to these crops before and they are really nice. The $40 crop fee includes snacks, lunch and dinner. The last time I went, the goodie bag more than paid for the crop fee all by itself. (Food and goodie bag contents are usually donated to the crop so that the fee can be donated to the organization the crop is benefiting.)
You get to catch up on that scrapbooking project you haven’t had time for, chat with a bunch of creative ladies (I’ve yet to see a man at a crop, but they’re certainly welcome!) and raise money for Alzheimer’s at the same time.
If you have an American Express card, please vote for the Alzheimer Association project, which is looking for funding for early diagnosis. It is really exciting to see that the Alzheimer’s project made it into the top 25, but now we need to win the funding! If you don’t have a card and you know someone who does, please pass the message on. Diagnosing Alzheimer’s early means that the patient may be able to take drugs to slow the disease’s progress.
Imagine getting ten more years of quality life because a doctor diagnosed Alzheimer’s instead of blowing off symptoms as simple old age. I really can’t emphasize the importance of early detection enough and it will only take about ten minutes if you haven’t already signed up to vote before. If you have signed up, it will be an even quicker process and it doesn’t even cost you anything!
You don’t need an American Express account to do this. Just sign up as a guest:
Nominate the ‘Alzheimer’s Disease: Early Detection Matters‘ project to receive $1.5 million in funding from American Express. The project’s goal is to spread awareness so those living with Alzheimer’s disease and their loved ones can connect with a support network as soon as possible.
It’s really easy to do and we only have until September 1st, so please take the time to visit and vote!
I had a request to talk about another hidden cost of Alzheimer’s - relationships. If you have opted to take on the care for a relative with Alzheimer’s at home, you probably hear a lot of positive comments.
“Good for you.”
“I’m so glad to hear that people still care about their parents.”
“I wish more people would do that.”
Yes, they’re really pleased you are keeping your loved one home and providing a good bit of the care, right up to the second they realize it will affect them. A single person caring for a parent often has to choose between having a serious relationship and the parent. Vacations, sleep overs and leisurely mornings over coffee and pastries are all things it is difficult to commit to. Unfortunately, they are all things that a person you are dating seriously usually expects.
For many people, starting a relationship while you are caring for a loved one with Alzheimer’s is almost impossible. Someone who could be Mr. or Mrs. Right is often scared off by the fact that you are pretty tied down. After all, it isn’t like he or she has been dating you for a year and is madly in love, so making a choice to see someone without baggage instead is pretty easy at this point. So, how do you manage to have a relationship while you’re an Alzheimer’s patient caregiver?
I don’t have an answer for everyone, because every situation is different. However, I do know that it is pretty unlikely that you’ll find someone special sitting in the living room! You’ll need to find a way to get out at least a few hours a week, which should be something everyone who is a caregiver should do anyway, since it helps relieve stress and helps you recharge your caregiver batteries.
If you haven’t been socializing at all, maybe you should start by finding a “children of parents with Alzheimer’s support group” to go to. Get out, talk to people and blow off some steam. At the very least, you may meet some friends that truly understand what you are going through, because they’re all struggling with the same issues.
Has someone offered to take over mom or dad’s care for a week so you have time to get away? You may want to take a caregivers cruise.
If you’d rather just get away from the stress and worry for a bit, attend church or join a local group that has similar interests, such as a bird watchers group or a knitting circle. Again, you may not meet your soul mate, but meeting new people is a good first step.
Have you tried dating while caring for an Alzheimer’s victim? I’d love to hear your tips for dealing with this tough issue.
You are on your way out the door for an important business meeting when you get the dreaded call - your dad somehow got past the vigilant staff at the nursing home and fell down several steps. How could a man who can barely shuffle to the bathroom and who forgets how to button his shirt have the necessary stealth and agility to escape from the day room and pass two or three workers on his way to the stairs? As you change your plans, you wonder how much longer your boss will be understanding of your missed meetings, late arrivals and other issues related to your sick parent. And you aren’t even providing home care!
People talk a lot about the cost of medical care, caregivers, day cares and equipment, but there is another very real cost - the careers of family members. I’ve talked before about how nice it is to freelance or have a flexible job, but if you are a lawyer, a vice president of a major corporation, or a sales clerk at the local big box store, you don’t have the same leeway I have. I wonder how many people have been passed over for promotions, have missed out on important projects, or have even lost jobs (Yeah, FMLA sounds super, but it doesn’t help everyone.) because of dealing with constant Alzheimer’s related problems during work hours?
Some people make the decision to put careers first and simply refuse to deal with problems during work hours. They even opt to leave a family member home alone, locked in the house, when the caregiver doesn’t show up. Perhaps they will be lucky and come home to a presentable home and a safe family member, but there is a very real possibility that the house will be ablaze and the Alzheimer’s victim will be trapped inside instead. To me, and to most people who live with an Alzheimer’s patient, this isn’t a solution.
I’d start out by asking my boss for a meeting. If he or she is a decent human being, you may be able to set up some solutions in advance, such as having a few part time or temp workers with very flexible schedules ready to fill in for you if there is an emergency. Making up missed hours by staying later or working on a Saturday may also work, as long as you aren’t in retail. Perhaps your boss will even be willing to let you work from home on days when the caregiver doesn’t make it in or on days when your family member needs to visit a doctor.
Do you have a story about the hidden cost of Alzheimer’s? I’d really like to know how much of a problem it is.
I received this letter from the Alzheimer’s Association. They encouraged me to send it on to my friends and family and I thought posting it on the blog would reach more people:
Dear Friend,
According to our recently released 2008 Alzheimer’s Disease Facts and Figures report, 10 million baby boomers will develop Alzheimer’s disease in their lifetime.
Kindred Healthcare a generous corporate partner of the Alzheimer’s Association is responding to this shocking statistic by offering an exceptional matching gift challenge opportunity for good friends such as you.
Simply put, Kindred Healthcare will match all gifts sent to the Alzheimer’s Association by June 30, up to $250,000!
Please don’t miss out on this opportunity to fund twice as much Alzheimer research, care, advocacy and awareness. Your generosity is key if we’re to defeat this devastating disease. Thank you again for your support.
Sincerely,
Angela Geiger
Vice President
P.S. Please don’t miss this opportunity to make an urgently needed gift that will go twice as far in the fight against Alzheimer’s disease. Send your most generous contribution before our Matching Gift Challenge ends June 30, 2008. Thanks again!
If you are in the Delaware area, this sounds like a really nice program. On Wednesday, May 14th, there is a free Giving Care/Taking Care Caregiver Skills Program on how to care for older adults at home. It is from 10am to 3pm at the Christiana Presbyterian Church, which is located at 1100 Church Road, Newark. Lunch and materials are included. You must pre-register by calling 302-255-1040.
