A guest post
Some of the many letters and emails that I’ve been receiving over the months have told the stories of the writers’ journeys with Alzheimer’s. I can’t begin to share all of those stories, but so many bear repeating that I’m sharing a part of one story that’s touched me.
I found out about your blog through the Phi Beta Kappan newsletter. My wife was the PBK member, and she is now in the advanced stages of dementia. Since dementia “creeps up on cats' feet," it's difficult to say when it actually began, but she's probably eight years into it with a normal expectance of maybe two more years. Since we're both well into our 80s, that's about all either of us would normally get anyway.
Like you, it wasn't something that we (or our family) wanted, but we don't get to select our late-life maladies. Since you probably have a 10-year expectancy and a seemingly bright mind (like my intelligent, upbeat wife), you still have an extended period in which your mind will function reasonably well. And your family will travel the journey with you at whatever level. One of the good things about filling up a reservoir of good will with your family and friends is that they come together in love and compassion when you need it, as you so correctly wrote in your post “A Paradise Built in Hell.”
My wife and I could still go to films and plays up to a year ago and she could stay with the plot. She's now pretty much bed-ridden and we watch repeating versions the same evening news -- local and national on two channels and then last night's reruns of Steven Colbert and Jon Stewart. Since the three hours of TV news and faux-news involve short segments that she can comprehend and since we hear pretty much the same set of segments upwards of six times, she can get a sense of what’s happened. A former avid reader of newspapers, magazines, and books, she's now switched to TV. Even half-hour dramatic shows are too long for her to maintain the plot, so she likes things such as the current “America's Got Talent” because the segments are no more than a few minutes at the most.
We have a large family -- 30 with our children, spouses and grandchildren -- and I've kind of done for them what you're doing with your blog: I keep them informed about the nature of dementia and about the current life of their female patriarch. In “A Paradise Built in Hell,” you mention the here-and-now world you're moving into, and I've also stressed that with our family. Keep the conversations to about what's occurring right here and now, and then she can, and will join, in. The challenge for us as a family is to not think of dementia in terms of embarrassment. It's what happened to us and it can also happen to them later on. So accept it with grace.
Over three years ago, we hired one of our much-loved, local daughters-in-law to provide us with home care during the Monday – Friday daytime, and that was a good idea. The assistance will not be so much for you as for your wife, who will need to develop a life of her own as your condition worsens. For example, it's allowed me to continue to participate in a weekly lunch with long-time colleagues. One significant advantage of hiring help from within the family is her knowledge of our previous life. They can converse about things that are still of significance to my wife.
Each of our stories is different. I’m grateful to this reader for sharing a bit of his and his wife’s journey.
Thank you, David, for your keen insight and sharing what others say. It's quite helpful for those dealing with a loved one's dementia or Alzheimer's to find better ways to engage and enjoy their time together. I post some of your links to one of my client's social media because your insight can help so many of her clients. Keep on writing and teaching us!ReplyDelete
I hope future notes or comments deal with the now independent single person living alone, w no children near or far. I'm 72, retired diplomat,trying to prepare for all possibilities. Thanks so much.ReplyDelete
I, too, hope that some folks will comment on people "independent single person living alone, w no children near or far." Personally, I feel almost no right to speak to a person in this situation and don't want to pretend that I do. The only time I've been afraid since my diagnosis was when I feared that something had happened to Marja and she wasn't coming back.
It sounds as if you're preparing yourself for this situation, Joan. Can you perhaps begin the conversation? How are you trying to prepare? Have you found others who have been helpful to you? I can think of a huge range of questions from a person in your situation, and I hope we will hear from some of those people.
Thank you for writing.
My Dad was widowed in 2003, and basically sat in a chair for four years until he died. My brother was his POA and lived in Denver, about two hours away. My Dad had a melanoma that went into brain cancer, I'm pretty sure. One day my brother got a call that my Dad could not drive home. So my brother drove down and got him at the doctor's office, and took him to his house. Now we were lucky that my brother was that close. My Dad went from driving in July, to dying in September, with all the declines happening over two months.ReplyDelete
If my Dad didn't have my brother close, or had no children, one should find a family friend or relative and give them Durable Power of Attorney, the living will, etc. You can do this with your attorney, they take a commission out of your money to take care of this for you. In the special care unit, we had two residents that had an attorney as their POA. He paid the bills, visited once a month, and was called on an answering machine if the resident was hospitalized or on antibiotics, etc. So its really an impersonal way to do it if you cannot trust a friend or relative. But its one way to successfully get through the medical worries. My daughter has my MPOA, my living will, executor, etc. If I become unable to take care of myself, even as far as having a surgery, etc. she can go to the bank and begin writing checks out of my account immediately. So I am lucky.
Helpful advice, Lee Ann. For those of you reading this who don't know: POA is "power of attorney" a person who can take care of your legal affairs when you're no longer competent to; MPOA is "medical power of attorney" who can take care of your medical affairs when you're no longer competent to. Most people make spouses or children their POAs or MPOAs; other people ask friends or other relatives, social workers, pastors, or, as Lee Ann comments, one can pay for legal help. It doesn't help with most of one's problems, but it can save worry about a lot of things.Delete
My attorney is the guy who handles the legal affairs of the two people in the care unit. I have a mentally ill daughter that lives in New York city, (I have a grandcat, lol) and she is on SSI. I worried that if I die before I spend it all, it could mess up her SSI to have extra income . My attorney said we could set it up that my other daughter will handle the money for her, sending her money for trips, or presents, etc. or we could set it up with him, the attorney doing so. But he would charge an amount yearly, so we decided to set it up with my other daughter. If she should die before me, God forbid, then the attorney will take over the trust account. Its always better to have someone you know and know that they care about your welfare. I agree, a pastor would be a good one, or even a distant relative. Several people in the care unit have a neighbor they have known for many years.ReplyDelete
This was the most helpful information I, as a caregiver, have read on your blog. My husband is 69 and was officially diagnosed with dementia/alzheimers earlier this year. I suspect this has been his problem over the past 4 or 5 years. I'm not sure where he is in the cycle but each day is a challenge for me and those around him. He is, or was, of normal intelligence, and has always had a hot temper. This of course has worsened over the past year. The doctor prescribed Aricept which only made him nauseous with no improvement in his symptoms and we will address this with his doctor at his next visit later this month. It is difficult to watch a once active man become so suspicious and negative to the point where he doesn't seem to want anyone but me around. We have been married almost 50 years and I seem to be his only safe haven. If you have any suggestions I'd appreciate any input. Keep up the good work. I'm doing the best I can to try to understand and help my life mate.ReplyDelete
[From the author of this guest post.]Delete
Thanks. Your problem is real, and it's complicated. I feel fortunate that my wife is normally a pleasant person to be with, and she seems to appreciate the help she gets -- that she'll be cared for, whatever happens. We experienced early anger and suspicion but that fortunately disappeared. You will hopefully have that change occur with your husband. He actually has a good reason to be angry. Dementia doesn't have the pain that cancer etc have, but it's still a total bummer for an active person, as she described him.
Advice? Avoid asking yes/no questions, because you'll always get a no, and especially from someone who is negative. For example, our daughter in law had a problem with my wife allowing her to vacuum our bedroom. I suggested that she simply go in and turn on the vacuum cleaner away from the bed -- and then go over and simply say that the rug needs cleaning and so she's going to vacuum it.
No problem. My wife said "Thanks for doing it" after having turned her down for several weeks.
I think the problem with negative folks is that they have a sense that they're losing a sense of autonomy. Give them all the autonomy possible. I told my wife a few minutes ago that I would fix her something to eat if she wanted it now, or I could do it later. She said "later". In her life now or later is fine, mostly because she gets to choose which. That kind of autonomy is what's better with home care than institutionalized care, as helpful as that can often be.
I don't know if I'm allowed to pass this information on to you here. I too am a caregiver for my husband diagnosed in 2007. There is a web site that is just for spouse of people with different forms of dementia. www.thealzheimerspouse.comDelete
It has been a life line for me dealing with his illness.
Hi. I have created a page of related sites and their links. The link to my page is "Selected Links" which you'll find at the top of this page on the left. I've put the link to TheAlzheimer'sSpouse there.Delete
This post says a lot. Jerry and I have just changed our living style. I had an active music career and was performing before the public almost weekly. Jerry had an active hobby of making CDs of local concerts and making copies for all who asked.Delete
Then, WHAM. I was stricken with a severe case of spinal stenosis and Jerry's dementia got serious enough that he finally made plans to retire.
His AD is not noticeable to others yet (as long as I am by his side to tell him who the person is.). I have constant pain when standing or walking, so my physical limitations and his diminished cognizance are balanced.
We faced reality, told our family and friends, and I quit ALL of my music obligations(church, university and community.). He takes care of the physical jobs around the house. I am taking care of the other necessary office duties to prepare for the coming years.
He helps me with the housework and I have learned to accept less than perfect bed making!! We sit in the evenings and watch television (a new hobby for us, and we enjoy that.). We read, listen to opera and I do needlework. We are very content and probably closer than we have been in our 54 years of marriage.
God is good!
Forgot to sign my name....Delete
Ex. Director of the Acadiana Symphony Orchestra
Now a full time wife to my husband Jerry, who is ending a 42 year career in internal medicine
To anonymous who is a cargiver of a husband who is 69. My husbands physician added Namenda along with the aricept and it worked much better than alone. I also had to give him the Aricept in the morning because he had nightmares at night. That has helped him to sleep much more soundly. My husband is only 59 and was diagnosed 2 years ago. We complained for at least 2 years prior that something was wrong but my doctor said he was just ADD. Well ADD meds did not help at all! Finally 2 years later while on vacation, he couldn't find his way around the rental house and we new something more serious was going on. My husband is a brilliant entrepenour and has even won Entrepreneur of the year for our region. It is heart wrenching to watch him slip away from being such a great thinker to repeating to me the same stories over and over. I pray for a miracle before it's too late to reverse this disease but I am not convinced that the medical community wants to cure it. They have created a whole new industry around it much like they have done with Cancer. Pharma companies want patients dependent on their meds not something that would cure it. This is am epidemic and something needs to be done about it soon!Delete
I've thought a lot about the medical research community and it's relationship to the pharmaceutical companies. I don't trust Big Pharma much, but I am absolutely certain they are serious about finding a cure for AD. If nothing else, it's a matter of dollars and cents. The company that discovers a cure will rake in profits that make the profits from all other AD drugs combined look like chump change.ReplyDelete
There are also researchers with universities and independent nonprofits. True, they depend on pharmaceutical money for their grants but they are not directly employed by the pharmaceutical companies. I am impressed by the integrity of those I have met. The ones I meet are, I'm quite sure, are in it for the good of society, not money. If their primary goals were financial, they could make a LOT more money working for PHARMA.
Like you, I'm a former Type A personality with a high IQ, but that's not why I can relate to your writing.ReplyDelete
I'm really touched by the beautiful vulnerability of your spiritual awakening.
Both of my elderly parents each have cognitive disorders. My mother's is caused by Alzheimer's.
They both had very traumatic childhoods and repressed—rather than faced—the emotional pain of that fact. It always colored our relationship and often drove an unconscious, unintentional wedge between them and everyone else including us children. They were parental only in providing for us physically.
Now, in their eighties, they don't have the ability to repress those emotions like they once did. As a result, they heap abuse, anger, and sometimes violence on almost everyone around them—myself included.
They sometimes ask for help but just as quickly won't accept it. (This doublespeak has been a hallmark of my entire life with them.)
My pain is knowing that I'm capable of helping them and want to, but that it's not possible without becoming a victim myself.
After my mother's recent Alzheimer's diagnosis, I decided to visit more often. However, the last visit consisted of them yelling at me, threatening violence, and embarrassing me in front of my fiancé. (This was their introduction to each other.)
I cannot take it. In fact, I refuse to and sometimes feel ashamed of this.
It's a relief (and a bit sad personally) to see your example of how to meet this disease with grace—or that it's possible in some cases.
Sometimes, I hope that they get too far gone to care about their old traumas—so that they can find relief.
You've reminded me of how _I_ want to grow old. Maybe that's the real lesson in all of this: how to grow old with grace and a full sense of what it's like to be human.
If nothing else, I'm determined to make something good come of this experience!
Thank you for sharing an obviously very painful story. One of the questions I asked in a post from last week ("Invisibility") was how much of this anger and violence is the result of repression of that anger and violence from early in life that are now released by the loss in inhibition. If that's the case, then psychological treatment (very early in the disease while the patient can still engage in it) might be very helpful. At the opposite end of the scale, the anger or violence or hypersexuality or whatever is not psychological but seems actually to derive from changes in the brain wiring that causes the change in personality that can be very dramatic. In those cases the only thing one can do, as far as I can see is to make sure you take of yourself and then roll with it.Delete
From what many people have told, the outbursts and anger are only a phase and eventually pass. As your parents become sicker and forget who you are, the personal attacks become less. Several people have written to say that the years of severe dementia were the years of the best relationship with their parents that they ever had.
I wish the best for you.