Tuesday, March 18, 2014
I found this to be very helpful. Even if your spouse has mild cognitive decline, as mine does, and not dementia, reading this may help you as it did me....
Candace Rotolo, AgingCare.com
Kay Bransford calls her parents the "senior edition of Bonnie and Clyde." Both have been recently diagnosed with dementia, but have been showing signs of forgetfulness for the past year or two.
Bransford recalls her parents, who have both had their driver's licenses revoked but continue to drive, telling her the story they'll tell police if they're ever pulled over. In that moment, Bransford is certain the couple knows that they're not allowed to drive, and are defiant about breaking the law. But just minutes later, the couple has forgotten the story completely and they don't remember even having driver's licenses. It's just one of the many stories Bransford has about her parents' deteriorating behavior. She admits, she sometimes wonders whether her parents are manipulating her and others, and that just adds to the guilt caregivers like her often experience.
"They're not the parents I knew," says Bransford, who cares for her 81-year-old mother and 80-year-old father. "It took me a while to realize that. In frustration I thought, ‘Is this the woman my mom really is?' She's saying so many things my mom would never have said. I know it's a manifestation of the disease, but in the moment, I took it personally."
Amanda Smith, M.D., medical director of the Byrd Alzheimer's Institute at the University of South Florida estimates that one-quarter of the caregivers she interacts with have concerns similar toBransford, and they question her about whether their parents are manipulating them.
"Sometimes caregivers assume that (their loved ones) are being manipulative because they just can't believe their behavior," she explains. But in reality, people with dementia aren't able to think through the process of manipulation.
Adds her USF colleague, Eileen Pioley, an Alzheimer's education director, short-term memory is the first to go for dementia patients. But it's not uncommon for people to have mixed dementia, with different parts of the brain being affected. In one form of dementia called Lewy Body, memory quickly fluctuates. If a patient has fronto-temporal dementia (also known as Pick's Disease), it effects the part of the brain that filters behavior. So the person may do or say things that are socially inappropriate, but they have no gauge of right or wrong, which is why a loved one may lash out and make hurtful statements.
Additionally, people with dementia often know that they're losing control and become afraid. Like a child, they act out because they've lost the ability to help themselves. Those emotions may also cause a patient to become easily agitated.
Notes Poiley, "The cognitive skills we have, dementia patients lose: logic, reasoning, problem-solving, decision-making. So a patient really couldn't be manipulative."
For those taking care of a person with dementia, there are several ways to cope with the conflicting emotions that most caregivers experience.
1.Don't take it personally: There is nothing to be gained by thinking your parent is being manipulative. Poiley believes this just adds to a caregiver's stress. Instead, blame the disease and not the person. Set a goal to maximize and enjoy the time you have with them.
2.Practice empathy: Kevin Henning, M.D. chief medical director at Amedisys Home HealthCare, encourages caregivers to consider what their loved one is going through. "It's hard for dementia patients to lose independence and it's scary for them."
3.Avoid arguments: "You will not win an argument with a dementia patient. You can try to reason with them but you'll never get anywhere," adds Dr. Henning. This advice has been especially helpful for caregiver Kay Bransford, who says she no longer disagrees with her parents on issues she knows are untrue.
4.Take a break: If you do find yourself arguing with your loved one, walk away for a few minutes. It's very possible the person with dementia won't remember the conversation, let alone the argument after a few minutes. It's also important that as a caregiver, you get respite. "Caregiving is a 24/7 job," adds Dr. Henning. "You have to get away from it sometimes." Look into adult daycare for dementia patients, or see if another family member or home healthcare professional can care for your loved one for a few hours, so you can get a break.
5.Listen and reassure: It can be hard when what a loved one says is illogical, but it's important to listen and be patient with them. No one chooses to have dementia, so reassure your loved one as best you can that you are there to help them through this journey.
6.Look for triggers: Try to get to the bottom of what drives your loved one's behavior, suggests Dr. Smith. It may be environmental factors – for instance, your loved one may be cold, but can't express that to you. Or your loved one may feel lost and alone. Consider what sparks outbursts or on-going arguments.
7.Get help: Some medications can be very effective in assisting dementia patients with the anxiety they feel, so be sure to discuss your loved one's behavior with their doctor or other healthcare professionals. It's also important to seek emotional assistance as a caregiver when you need it. Find a support group where you can share your experiences and know that others are going through the same thing.
8.Have a plan: Bransford wishes her parents had made their wishes about caregiving known to her and her siblings before they became ill. If possible, have your loved one consider the pros and cons of assisted living, nursing homes, home health care and other options, and have them decide how they want to spend their final days before their condition deteriorates.
While it's still not easy for Bransford to reconcile the memory of her parents just a few years ago with their current condition, she considers that acceptance a mourning process. And Bransford likens her parent's behavior to people who have suffered brain trauma. "I have to remember that they're not doing things to be mean or cruel – there's something wrong with their head. It doesn't always take away the doubt, but it does get easier."
Sunday, March 16, 2014
Saturday, March 15, 2014
I am thinking of blogging some thoughts on caregiving again. I'm sorry I've been away for so long, and I thought perhaps you might be interested in the changes that have taken place in our lives.
The biggest changes are that we are now a three person family: me, Dear Hubby, and Dear Younger Daughter. Our oldest moved out, and then a year later, our youngest son moved out. It was bittersweet. It was time for them both. Living at home as adults is hard.
Our daughter lived with a friend for about a year and half, then when it was time for our younger son to move out, she and he moved in together with a third roomie. And then, exciting times, our oldest married, September 2013. It was a beautiful wedding and we love her husband as our own son.
The sad part of her marrying is that she has moved to Canada to live with her husband. He was born and raised there and has lived there his entire life. She is adjusting to living so far from home and in another completely foreign climate. (We are in Texas.) She has seen more snow that she ever cares to see again. :) she is happy with her choice in partner, but still learning to adjust to this new place. She comes home to see us often.
Our younger son became a paramedic and now has two jobs with local Emergency Medical Services in our area. He is currently living about 10 minutes from us and comes over to help care for his dad, so that I can have some breaks.
And our son, who is married and was living 200 miles away, has moved back to our area. He is also 10 minutes away and now has two children, a boy and a girl. His family's main reason for moving close by is to help with his dad and help carry some of my burdens. He comes over twice a week to bathe his dad, and keeps our yard work done. He stays with his dad once a week, so I can have a break to do my shopping or just get out of the house for a bit.
My husband's disease continues to progress and he has lost more of his functions. He can only use one hand for just an hour or so a day. He gets on FB, just long enough to most an encouraging word, and reads through his newsfeed. The rest of his day is spent resting, listening to music, resting, listening to his Bible app, resting and watching tv. He has continued to loose weight, and now weighs around 130 lb. We knew he had been loosing weight, and we were surprised when he was finally weighed at the hospital during his last admission. His previous weigh in, four years ago, he was 165 lbs.
My husband is having a plateau again after a rough six months. He has had issues with UTI and was very ill from it around Thanksgiving. He spent five days in the hospital on IV antibiotics. And then the end of January, he had surgery to remove a ton of stones. He has had some testing done, some new meds and lots of follow up visits. We've finally settled down into our new normal. And things are better.
His old power wheelchair was no longer working for his current disability, and we had gotten to the point of needing an ambulance to take him to medical appointments. He recently got a new wheelchair that meets his needs and he is able to transport by medical transport vans. I am using a Hoyer lift all the time now, because he cannot support himself in any way. I am still home with him, taking care of him, but fully realize that I couldn't do this without Dear Younger Daughter's help. I would be running ragged, which even with her help, I am always on the verge of feeling overwhelmed.
I am staying busy with cooking, cleaning, caregiving and playing in the dirt. Our attempt at an herb garden a few years back lead me into square foot gardening, and I am enjoying growing things in my yard. I am not quilting anymore, although I still have fully stocked and organized room, in case the quilting bug strikes again. I am staying so busy, I really haven't found the time to do all I need or want to do. And often when I have the time, I do not have the energy. I have been focusing on nutrition and calorie intake for my hubby, hoping that getting his weight up, in a healthy manner, will help with his quality of life.
I will try to continue posting updates as I can. Thank you for being such a special part of our life.
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