Exhausted caregivers often say that one of the hardest things for them is that they can’t get quality sleep. Even caregivers who have loved ones outside of their homes can have problems since they are still on call day and night for frequent emergencies. However, it’s the Alzheimer’s caregivers who have the hardest time since Alzheimer’s disease can cause severe sleep disruption.
A recent report by the Mental Health Foundation (UK) is calling for dementia to be treated as a disability. They said, correctly, that dementia is seen as a disease like many others in that it should be curable. Tragically, only when dementia is caused by medications, infections or some rare, operable situation is it curable. Instead it is a relentlessly progressive, destructive disease with which the affected must live until they eventually die.
Dear Carol: My mother has been in a nursing home for two years because of strokes and vascular dementia combined with Alzheimer’s. It’s obvious that she’ll never go home. Dad died years ago, but Mom stayed in the family home where we kids grew up. While my siblings and I know that this house must be sold to pay for the nursing home, Mom talks about the house and going back to it. Do we tell her that we have to sell it or do we just pretend that it’s still hers? I hate being dishonest with her, but I know that she’ll be talking about the house and she’ll be terribly upset if we tell her we’re selling it. How do we handle this? - Dave
If what we do isn't highly paid or well understood, many people often brush it off as unimportant. Thus, one of the most important jobs in our society today – that of being a family caregiver – is all too often undervalued by people who don't understand. We may not be able to control other's viewpoints, but we do have some control over whether we accept this view of what we do and remain confident in our own decisions.
...That's a tough concept for many adult children and spouses of people with dementia to absorb. Validation of our loved one's reality is very often the most kind, respectful response to their altered world that we can provide. In order to offer that validation without coming across as condescending, we need to understand the reason behind "therapeutic fibbing"—as validation therapy is sometimes called.
1. Have an ongoing conversation with your loved ones about your wishes for care as you grow older. Over time, if your attitude is relaxed, these discussions can become as natural as talking about taking a vacation. Discuss the best case scenario as well as a second choice. Never make your family promise not to put you in a nursing home. That is unfair. No one can know the future.
2. Make certain that you’ve assigned a Power Of Attorney for Health Care with the understanding that this is an evolving document. Our attitudes about what we’d like under certain conditions can change with age. Keep your assigned POA and others in the family updated on any changes that you make.
3. Assign a Power Of Attorney for financial decisions, as well. The person assigned as POA for finances doesn’t have to be the same as the person that you choose for health care. Also, of course, a Will should be drawn up. If you expect that there may be issues about certain belongings, assign potential ownership early and explain your reasoning so that there is no doubt later on.
4. If possible, choose housing in or near a community with a good healthcare provider, including a hospital that you trust.
5. Consider housing options that can be converted for comfortable living should someone develop mobility issues. Wide hallways that can accommodate walkers and wheelchairs are a plus.
6. If remodeling, put in lever door handles rather than knobs and easy to open cabinet pulls. Attractive shower bars and even grab bars by the toilet are now available in decorator colors and non-clinical designs. At the very least, while you look for new housing or plan remodeling, be aware that you may want to make changes in the future so try to allow for flexibility.
7. When you replace appliances, choose those that have easily readable numbers and obvious alerts for when burners or oven are on.Aging eyes can make reading stove controls difficult. Related to that is good lighting everywhere. When decorating, look for lamps and tract lighting that can accommodate bright wattage. Lighting becomes far more important as we age.
8. Furniture should be comfortable with fairly high, firm seating. This doesn’t mean function over beauty, but keep it in mind when buying your couches and chairs.
9. Vehicles that are to be kept long-term should be moderately high off the ground as low seating can be difficult to get out of when aging joints begin to complain. On the opposite side, avoid anything that is too high unless you want to carry a portable step with you.
10. Tell your family and others often that you love them. Try to mend broken relationships. Agree to disagree but show that you care. None of us know how much time we’ll have for these important matters.
...f a caregiver is anxious because of job stress, he or she likely takes that anxiety home in some form, and transfers some of it to the person they are caring for. This is not intentional, but even body language can transfer anxiety. The person being cared for picks up on the anxiety of the caregiver. His or her anxiety may stem from not knowing what is causing the person caring for them to be stressed, so they blame themselves. Or they may just absorb the feeling of generalized anxiety that radiates from the caregiver.
Stress has long been considered a major risk for developing Alzheimer’s, but there hasn’t been any real understanding as to why this is so. Now, researchers at the Center for Translational Research in Neurodegenerative Disease at the University of Florida think that they’ve come closer to discovering the connection.
Dear Carol: My mom survived cancer in her mid-years, but since developing dementia she’s also had to battle three rounds of pneumonia. It seems that each illness she’s survived has diminished her. She’s now in late stage Alzheimer’s and when I look at her sitting in a chair but not knowing anyone or even understanding what is happening when she is washed, fed and comforted, all I can think of is why can’t she die. I feel terrible about this. I read about people who would give anything to have their parents back no matter what shape they are in. How do I cope with my emotions? - SMB
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.