Heading into the dark night of the mind
Dementia cases of loved ones present huge challenges to families
Dementia does not just change the lives of people who suffer from it. It also changes the lives of those who love them.
This condition is defined by the way it seriously afflicts mental ability, often due to a degenerative disease such as Alzheimers disease or Parkinsons disease. Although it can occur before the age of 65, dementia is far more common in older adults. It is one of the saddest and most challenging conditions that a family must deal with: first, in recognizing it, properly dealing with it, and, finally, finding the best living situation for an elderly parent or loved one.
Studies indicate that dementia is becoming more difficult to deal with than ever. A recent study by the RAND Corporation and published in April by The New England Journal of Medicine showed that medical costs of dealing with dementia are rising at a shockingly high rate. RAND reported that today 15 percent of people 71 years and older suffer from dementia, or about 3.8 million people. With baby boomers rapidly aging, the study predicts that number will rise to more than 9 million by 2040.
Families are overwhelmed, afraid, confused, said Ann Adrian, manager of the Lake Oswego Adult Community Center. It may be the first time they have encountered a process involving dementia, and it is baffling and bewildering.
Adrian gained this knowledge through hard experience. Although she had worked for more than 20 years in gerontology, it did not prepare her for the time when her mother started showing signs of mental decline.
I thought I could take things on myself, Adrian said. I was wrong.
Nancy Raske of Lake Oswego has been like a sentinel for families needing all the help they can get with an elderly parent stricken by the sudden onset of dementia. Raske founded Northwest Senior Resources Inc. seven years ago, and now she has taken on Julie Ouellette as her partner.
Raske became a professional in this field because of the traumatic problems she encountered while dealing with her own mothers dementia.
Ouellette has had 12 years of experience as an advocate for senior citizens, including the last nine years at SpringRidge at Charbonneau.
Julie is my secret angel, Raske said. We make a good team.
Raske and Ouellette are the main sources for this story, which deals with three major areas: Taking the correct course of action on helping a loved one with dementia, finding the best living situation for them and considering an up-close example of a family that has taken the entire ride of dealing with dementia the ups, the downs and the heartaches.
Troublesome early signs of the onset of dementia include paranoia, delusions, hallucinations, mood swings, fear of water or of disrobing, repeating stories and being unable to express needs when in pain or needing help in using the bathroom.
They overestimate what they can do, Raske said. Like driving or writing checks the loss of mathematical ability is one of the first signs that dementia might be occurring.
When we first find out about dementia we evaluate where they are and how far along they are.
A plan of action should include setting up a Power of Attorney document and advanced directives, sometimes establishing a guardianship or conservatorship, addressing safety issues and contacting an elder law attorney.
If you can, do this prior (to dealing with the onset of dementia), said Ouellette. You will be much better off. The petition court is an unpleasant process.
Surprisingly, the smarter the loved one is, the more difficult it can be dealing with their dementia.
Many of them have brilliant backgrounds and careers, Raske said. Thats why it is difficult for family members to recognize their need for help. They may be highly educated, teachers or bankers. They are usually 75 to 80 years old, but they could be in their 60s.
Ouellette noted, I dealt with a nuclear physicist who was only 58 years old. It was heartbreaking. There was also a woman who forgot her daughters name. But she did The New York Times crossword puzzle every day.
The first wakeup call about a loved one coming down with dementia is often shocking. Raske cited a case where a parent wandered off and was nearly run down by a car. Milder signs include forgetting to eat, significant weight loss, or turning on a faucet and forgetting to turn it off. One of Raskes clients flooded the downstairs area of a home by doing that.
Perhaps the most cautionary area is other illness, which often leads to an escalation in dementia.
Two things can have a big effect, Ouellette said. A urinary tract infection can make a person very loopy. The other is dehydration, because they dont like to go to the bathroom.
However, Raske said, The most difficult thing is getting a family out of denial to accept what is happening to a parent.
Finding the right place
Junk food, bad odors, isolation of ailing people these are strong indicators that a senior living facility is not good.
But more input is needed for a family to select the right living situation for an elderly loved one with dementia.
You want high-quality menus, a care building and an excellent staff, Raske said. You want a place with a high state rating that is well educated on dementia. A place has to have a good feel about it.
You have to ask what is the geography, financial ability and care needs in finding a place that is the right fit for a family, Ouellette said. Is a facility just a pretty place or does it have the right programs? Even in a five-person adult foster care home you have to find whether a client is a good mix with the other residents. A good homeowner will say, They wont be the right fit here.
A little detective work can be most helpful in finding the proper place.
We do mystery shopping, Raske said. We make surprise visits where we pose as potential clients. We do a survey of the home, interview the owner and get a feel if there are activities or else if clients are left to watch TV for hours.
The more expertise a family brings to a search the better. But nothing beats family members themselves checking out a potential home.
Raske said, You should visit a building two or three times, see the staff on different shifts, taste the food, and meet administrators. You want the owner to keep hours so the family can visit easily. Sometimes we recommend a five- to 10-day stay in a home as a trial test run.
You need to stay engaged to make sure your loved one is well cared for, Ouellette said.
Finding the proper place for a loved one with dementia is more critical than ever because the number of people with dementia is rising sharply.
Parkinsons is on a rampage, Raske said. There is a great need for more memory care buildings. The need is exploding.
People are now exposed to so many more chemicals and toxins than before, so there are many more people who get dementia, Ouellette said. There is a great need in Lake Oswego to help these people.
A long, difficult journey
For Mary Beth Collins, dealing with her mothers dementia was a task that started slowly but increasingly gained more momentum and difficulty. Her experience might serve as a prototype for countless other people who must deal with similar situations. The process became downright heartbreaking at times. But at the end Collins and her two brothers could take solace that they had survived the ups and downs and had done the best job they could.
Dad died in 2002, Collins said. We noticed that mom wasnt doing as well as we hoped. She started taking on projects that she shouldnt have attempted, but there was nothing too alarming.
Finding the best place for her mother to live was truly challenging for Collins. Twice her mother chose to live at places that were not the choice of her children, and this proved to be nearly disastrous.
In 2008 I went to visit her at the retirement home and, to my horror, she had no idea of what medicines to take, Collins said.
Collins mother eventually went into assisted living until 2011, when things really went downhill. We didnt understand what was going on.
This period of turmoil ended when Collins and her siblings contacted personnel at Marys Woods in Lake Oswego for help.
They said they had the name of a person who was just terrific Nancy Raske, Collins said. She is just amazing with her knowledge and she is very therapeutic. She drove around with us, asked us questions, and gave us books to look at. Nancy cant tell you pick this place. But she can tell you the pros and cons about a place and who is doing a good job.
Collins and her brothers encountered some awful problems prior to placing their mother at Springs at Wilsonville Memory Care.
Getting a demented person through airport security is terribly difficult, said Collins, noting that her mother was separated from her children and sent to a line where she was asked questions she simply could not answer. The airlines are not helpful. Theyre crazy, frankly.
Through it all, Collins said that Raske stuck by her family, guiding them each step of the difficult way until their mother was placed in the right situation.
When you are Nancys client, you stay her client, Collins said.
Things settled down until Collins mother broke her hip in 2012.
She said, An operation on a person with dementia is a hundred times worse than on a normal person.
The journey ended this past March when Collins mother passed away.
Collins can now make some wise, sad and poignant reflections on her experience.
The end worked out very well, she said, but it was a scary experience. None of us had ever sat through a situation like this with a parent before. Our dad had died so suddenly. We did some things right, like getting the advance directive and the power of attorney. You make sure what your parent wants, like not making any heroic efforts to keep her alive.
The hardest part for me is as demented people become more demented and they say, I just cant think straight; I dont want to live like this, you cant fix things. They are not going to get better. This person is not going to be what they used to be. Its like taking care of little kids, only it ends up in an opposite way. They will never think or feel like they used to.
One thing you have to do is get comfortable with lying. That doesnt sound good, but if you tell them that someone has died they get upset and sad. You should say, Gee, I dont know where he is. That makes them happier. Youve got to go with the flow.