Caring for aging parents when both have dementia
by Carol Bursack
Many of us hear of a devoted, aging spouse who is caring for a mate who has dementia. I've witnessed many of these teams, where often, once the ill spouse enters a nursing home, the well spouse becomes absorbed into the care center culture as a volunteer. The adult children often are part of the care team, but they still tend to rely on the well parent for most communication and daily attendance to their sick parent. Then they get the news. The parent they thought was well has also been diagnosed with dementia.
Having one parent with dementia is tough enough. Having both afflicted with dementia, often of different types of the disease and in different stages, can be overwhelming. Both of my parents had dementia. First, Dad had brain surgery that, for reasons unknown, put him into instant, severe dementia. He required nursing home care. We were fortunate to have a home that was just blocks from my own house and close to the apartment where Mom and Dad had lived together. Mom, though showing signs of short-term memory loss, was okay at home with my help. We'd make our daily trek together to see Dad at the nursing home.
First one dementia, now two
As months blended into years, Mom's memory gradually got worse, her judgment became more flawed and it was evident that she was sliding into dementia. Eventually, because of chronic falls and other safety issues, she joined Dad in the nursing home. Even at the nursing home, Mom still considered herself Dad's primary caregiver. I understood her need to believe that, but she couldn't be trusted to be kind to dad. They'd been childhood sweethearts and traveled the road of matrimony in a fairly harmonious manner. Mom had always been the dominate personality. This came out in an increased manner after Dad's sudden dementia, and only got worse as her dementia rendered her less capable of understanding Dad's changes.
I sometimes felt that I needed to protect Dad from verbal abuse, even though I know my mother didn't mean anything negative in her manner. Frankly, she just couldn't bear seeing her beloved husband in such a demented state, and her own dementia rendered her incapable of concealing that fact. She would scold him for things he couldn't help. My situation wasn't nearly as bad as many people's ordeals, but it still was heartbreaking to watch.
When caregiver is diagnosed with Alzheimer's
I remember a wonderful couple at that nursing home. Rosewood was an excellent facility and was very welcoming to well-spouses. This couple had obviously had a loving marriage. The wife had been diagnosed with Parkinson's disease and needed nursing care. The husband spent most of every day at the nursing home either with his wife or by helping in the dining room, at games or anything else that required a volunteer.
This gentleman's wife developed dementia. The husband, devoted as ever, kept visiting daily. However, I began to notice that something was different about him. Then, I heard this rock who had cared so lovingly for others was diagnosed with Alzheimer's. He, too, became a resident at Rosewood. The family who had thought they only needed to be backup carers sudden found themselves overwhelmed with grief and red tape. They never dreamed that their mother would still be alive while their dad lost his awe inspiring powers of caregiving. They hadn't prepared for this event and were not up on their Mom's care needs, let alone their Dad's.
No preparation for Alzheimer's diagnosis
Apparently their dad, too, though he was bullet proof. He hadn't prepared the necessary paperwork for his eventual loss of capability. He was the caregiver to his wife, but he didn't do the necessary paperwork to pass on the responsibility. It's likely that this highly intelligent man was able to cover up his own memory lapses because all attention was focused on his wife.
Much like my situation, where the evidence of dementia was so evident with Dad that even Mom's friends just chalked her memory and judgment issues up to stress, these adult children were blindsided by their dad's seemingly sudden decline. He fought their efforts to take control of their mother's care, since he considered this his territory alone. He also fought any effort to control their finances.
One thing in their favor was that since the wife was already at Rosewood, the family finally cajoled him into moving there as well. Many families don't have this card to play. Still, this family was faced with two parents with different types of dementia, in very different stages. They bounced between the parents in a confused haze of their own. If it hadn't been for the professional and caring staff at Rosewood, I don't know what would have happened.
I hear from many readers who have two parents still in their own home, both with dementia. The one in charge, either man or wife but generally the stronger personality, refuses help. He or she considers everything fine and is taking care of the spouse responsibly. However, the adult children see abuse and neglect.
Outside help is necessary with Alzheimer's or dementia
For families with parents diagnosed with dementia, I strongly advise getting help soon. As dementia increases, family members are often seen by the elder as interfering and overbearing if they try to give advice. Even the suggestion of hiring in-home help is often rebuffed. You'll likely have to find third party help. Here are four tips for dealing with cases of Alzheimer's or dementia.
- Reach out to trusted individuals. First try a family friend, a spiritual leader or other trusted person who may have influence on the dominant caregiver. Often a person outside the family, but still known to the people affected, will have influence and may be able to talk the couple into getting help.
- Consider social services. They can do a welfare check on the couple. If they see that this couple cannot safely live as they are, there will be some enforcement behind you and you hopefully will be able to get your parents the care they need.
- Stay consistent. Be aware that this may take several tries. Many people with Alzheimer's and other dementias are very clever about hiding their dispositions when strangers are around. Indeed, they can become downright charming for a brief time. Yet you can hope that the house is in such disarray or the medications so neglected that the social workers will have something to hang onto.
- Be prepared. Worst case scenario happens sometimes. The caring spouse is so abusive that he or she is temporarily institutionalized as mentally ill and the "cared for" spouse is admitted to a care home. When things go right, they both get the help they need and are reunited in the same care center or in their home, if that is possible.
If you have no Power Of Attorney for financial and health care to back you up, you may have a much harder time helping your parents and will have a greater need for social services or even a court order. Work with authorities if you have to. Just don't blame yourself. You need to do whatever it takes to get help for vulnerable people. In this case, that means your parents.
You may want to look at getting some help for yourself, as well. Coping with this scenario is more than anyone should attempt without support.