...What needs to be done to give men the visibility and support they deserve? Society must catch up with reality. Since men have always been providing care to some degree and will continue to do so in increasing numbers, the fact that a large percentage of family caregivers are men should become recognized as the norm. Strong men are making this happen by overcoming a perceived threat to their manhood and allowing themselves to become visible in public and online. Dedicated women are also spreading the word.
Dear Carol: I’m watching my mom decline from Parkinson’s disease complicated by Lewy body dementia (LBD). She has good medical care and lives in a nursing home that has been a blessing to us all. I try to imitate the way that the staff works with her because they seem well trained. The problem is Mom is not just another patient to me. She is my mother. I want to fight what this disease is doing, and sometimes that makes me forget how I should work with Mom’s disease, especially when it comes to her LBD. I just can’t accept what’s happening. I know that my feelings are irrational because her disease can’t be cured. Am I strange for feeling happy with her care on days when she seems okay, but mad at other times? What’s wrong with me that I can’t be like these people and just accept that Mom can’t be cured and learn to help her so that I can let go of my anger? Marianne
The stories in this fine book showed us how others have gone through similar things with their families and that is somehow reassuring. There are some helpful suggestions but mostly there is the recognition that others went through the same thing. All we can do is our best. That is greatly reassuring during these difficult emotional times. If you are a caregiver, this is a must read. - Delores Edwards
While family members who provide care for loved ones share many issues, there’s a different emotional dynamic between caregiver and care receiver when the care partners are spouses than when they are an adult child caring for a parent. Here, we offer some tips for spouses.
An amazing book of stories that will touch your heart and encourage you, especially if you are a caregiver. Carol Bradley Bursack also has an excellent website devoted to the elderly and their caregivers. - Carol Heilman
The heat-wave we’ve been having in most parts of the country has made many people a bit crabby. Even those who like heat tend to wilt when there is no break. However, for many elders, extreme heat can be much more than uncomfortable. Extreme heat can kill. One of the many clues that my mother-in-law was ready to move across the avenue from her condominium to a wonderful nursing home was her response one hot summer to an intense heat wave we had here in the Dakotas (yes it gets hot on the prairie). She would have every window shut tight and her fan and air conditioner turned off. No circulation. No cool air. Nothing but dead heat.
People with dementia, especially advanced dementia, often have a difficult time articulating pain. Sometimes they may not be cognitively aware that pain is the source of their distress. Therefore, it’s our responsibility, as those who provide for their care, to watch for signs of distress that may arise from pain.
Dear Carol: I’m a certified nursing assistant (CNA). My dad has been caring for my mom, who has severe lung disease as well as dementia, and he's worn out. We agreed that it would be a good idea for me to move in with my parents to help with Mom's care. Dad agreed to this arrangement because he knows that he needs help, but now that I’m here he won’t let me do anything for mom. I just want him to get some rest before he collapses, but he can’t seem to let go. He’s still up all night because Mom doesn’t sleep much, and he insists on providing nearly all of Mom’s daily care. I feel like he doesn’t trust me. What’s the solution? Terry
Whether you’re caring for someone with dementia or visiting them from time to time you’ll want to do your best to make them feel good. No one will ever hit the right note every time but knowledge helps. With that in mind, here are a few pitfalls that you can avoid in order to help make your time with a friend or loved one who has dementia less stressful.
Increasingly, stress is considered a risk factor for dementia, particularly Alzheimer’s. Stress is also a risk factor for stroke and heart attack as well as a trigger for many diseases from arthritis to psoriasis. Obviously, limiting stress in our lives is a good idea. But how? Simply living what we call modern life seems to make stress the norm.
...The whole procedure became so stressful that we made a mutual decision for me to care for her hair in her own home. I'll tell you upfront that I'm not good with hair. For the most part, I'm a minimalist. Alice had perms, but her hair still needed washing and a daily curling to arrange it nicely. Over time, and with lots of humor thrown in, I did learn a few things over the years.
...They may have pain issues that keep them from enjoying food, or dentures that make chewing uncomfortable. Depression can be a factor for some people, as can medication side effects. Loneliness, especially for people who have lost a spouse to a nursing home or death, can make eating seem unimportant or unattractive.