I keep hoping I'll wake up

March 3, 2010 7:39 AM

I just found out this morning that my 60-year-old father has early-onset Alzheimer's. What do I do?

My father went to a neurologist because he was losing words. My mother called me this morning to tell me that he has early-onset Alzheimer's.

My parents live in Indiana. I live in Florida. My husband's parents and extended family live in Alabama; my parents have no family (besides me and my in-laws) in the US. I work full time and am in graduate school.

The idea of Alzheimer's never crossed my mind; both my parents are very intelligent and (was, I suppose, for my Dad) erudite and I never would have imagined this.

What can I do? Both to try and come to terms with this news and also to help my mother and father? How has our life just changed? I am at a total loss and need to know where I go from here once I stop crying.

posted by subbes to health & fitness (24 answers total)

Good luck to you and your family. This is heartwrenching.

Check out the Alzheimer's Association. They are a goldmine of resources for Alzheimer's patients and loved ones.
posted by Rosie M. Banks at 7:49 AM on March 3, 2010

I'm sorry to hear this. Author Terry Pratchett was recently diagnosed with early-onset Alzheimer's. Despite this, he has continued to be incredibly prolific, and, in addition to his writing, is making a tremendous effort to support Alzheimer's research. I find his resilience to be comforting somehow—maybe you will, too. Here are two interviews with him: Guardian and Telegraph.
posted by ocherdraco at 7:58 AM on March 3, 2010

I am sorry to hear that.

Nthing Alzheimer's Association which has an extensive network and provides great support. Besides the website, you and your mum can call the helpline for the local chapter - Florida here and Indiana here. Call them and they will provide you with the information you need about early onset Alzheimer's. You can ask them to mail you useful booklets and information. Sign-up for their weekly email newsletter. They also have support groups that you and your family may find helpful. All the best to you and your family.
posted by serunding at 8:01 AM on March 3, 2010

This is the advice I would give you if you were my child: stay in school and finish. Your dad is in the early stages and the employment you qualify for with the higher degree will pay more than the undergraduate degree, thereby enabling you to contribute more at a later date. Ask your mom if this is what SHE would like as well.
They have just received the diagnosis, so you have some time.
Be there (by phone) for your mom if she needs someone to talk to.
Invite them to move to Florida. They will be nearby and the winters milder. Visit with them on every school break.
Contact the National Alzheimer's Association. They have support groups, practical advice and help for your whole family. They usually have several fundraisers through the year for research to eradicate alzheimer's. (sorry- can't add a link- on a smartphone & it doesn't have the capacity.)
The last thing is to be strong and hopeful. Lean on your faith and family for support. Pour out the love to your parents that they have lavished on you all these years. You will grieve, but when you turn the grief into giving back you mature into a better person. Your parents are blessed to have such a loving daughter.
posted by srbrunson at 8:02 AM on March 3, 2010 [6 favorites]

The first thing you do is take care of the legal stuff. Especially important is the healthcare power of attorney; regular durable power of attorney for business matters is important as well.

There is a lot of support available to you; check with your own local hospital for an Alzheimer's support group in your area. It can be bewildering and overwhelming.

And yeah, it is heartwrenching.
posted by bricoleur at 8:02 AM on March 3, 2010 [1 favorite]

Forgot to mention - a good movie about early onset Alzheimer's - Away From Her.
posted by serunding at 8:04 AM on March 3, 2010

My father too. I don't have any really wise words about coming to terms with it, because it's been a couple of years since we found out and it still makes me cry thinking about it sometimes. When I see him, I just try to be really positive and patient. He forgets things that people said and gets frustrated if he realizes it. So, we all just answer his questions like it's the first time he's asked them and try to keep explanations for things simple. In a lot of ways, he's already a different person than he was before. I have tried to accept that and not dwell on what he's lost. It's gone. Now he is this other person and we deal with him as he is now.

My step-mother got him into a twice-weekly class for people with Alzheimer's. He was resistant at first, but there are other younger (60's) people in it, and he really enjoys it now. It gives him something social to do, and they do exercises that are supposed to help slow down the symptoms. Your mom can look for stuff like that.

My step-mother has found some other coping techniques, like printing out a schedule and printing out concrete, simple tasks for him to do. I don't know where she got them, but there are a lot of resources out there.

Your mom will probably need a lot of support. You can help her find resources, but most importantly be there for her to talk to. It's a hard thing, to find yourself the caretaker like this.

I'm sorry about your dad.
posted by Mavri at 8:15 AM on March 3, 2010

I went through this with a very close grandparent. It will be very, very hard, and it will take immense courage, but there will also be moments of great love and even humor.

To start, consider therapy to deal with the pain this will bring you. I assume your father will start seeing someone soon? Your mother should absolutely also see someone, as it seems she will be the main caregiver here, and maybe the three of you can attend a few session together.

In a few months, when you can handle it, I suggest reading Still Alice, a novel told from the perspective of an extremely intelligent woman coping with her own early-onset Alzheimer's, and Alice Munro's short story "The Bear Came Over the Mountain" (free on The New Yorker's website), which was made into the film Away From Her, and is narrated by a man whose wife has Alzheimer's. You father and mother may enjoy these as well, but they are both fairly true (and thus bleak), so use your judgment.

Right now, your father is likely terrified, and that is where therapy and your love can help. Eventually, thought, this horrible disease will be significantly more painful for you and your mother than it will be for your father; this realization alone of course brings more sadness. Learn to remember him as he was, learn to recognize and treasure the moments where his old self breaks through in some form (for example, my grandmother may have had no clue where she was or who we were, but she was never once less than meticulously polite, exactly as she had always been), and learn to deal with what you can through humor. There is nothing wrong with you for laughing when your father opens and reopens a birthday card, and finds as much joy in it every time. Think of what your father would say, think of how he would want you and your mother to be happy, to do anything you could to laugh fondly instead of cry.

Tell him you love him over and over again, and let him tell you the same as often as he wants. You and your family are in my thoughts.
posted by sallybrown at 8:16 AM on March 3, 2010 [1 favorite]

It's not too early to start making plans for care. Eventually, your father will need full-time care, and that can be very taxing for a single care-provider like your mother. I'm afraid that unless you totally uproot your life (move close to your parents etc.), or your mother has access to huge resources (24/7 home nursing care) your father will end up institutionalized. Those institutions would need to be researched for quality of care and convenience (visiting).

For now, enjoy the company of your father, and don't make this into a living wake (I know it's hard). You still have some time, and it's no use making this more stressful for your dad than it already is. Also prepare for personality changes in your father (perhaps a lot of anger), and possibly even some strain between your parents - this can be a very stressful time as everyone finds searches for their own role. Do some reading on living with this disease, and see how you may be able to assist.

Finally - and I hesitate to even write this - take care of yourself. Avoid supplements with copper, copper pots, water from copper pipes etc.. Exercise (aerobically, so there is blood flow to the brain). Keep intellectually active (looks like you got this covered with graduate school, but keep on going with continual learning). Avoid saturated fats, cut out all added sugar (Alzheimers has been described as a diabetes of the brain), go vegetarian (except for fatty fish), get enough soluble fiber. Don't panic, not everything is inevitable.
posted by VikingSword at 8:19 AM on March 3, 2010 [1 favorite]

To clarify: dietary copper is fine (and may even be protective), it's copper from supplements and non-dietary sources (water from copper pipes etc.) that has been linked to problems.
posted by VikingSword at 8:29 AM on March 3, 2010

Is your mom around the same age as your dad? If she's 60-ish, that's both good and bad. It's good because she will have the energy to care for him for at least another decade, most likely, but bad because she may become his full-time caregiver in a few years and that will consume her retirement and prevent her from traveling, etc.

You should have an ongoing conversation with your mom to make sure she's coping as your dad's dementia progresses. Does she know all the local programs and services available to them? Does she have a way to get out and do her own thing for a few hours a week? Does she have enough money to get hired assistance in-home or at a center when it gets to the point of too much for her to handle alone?

Being a caregiver for someone with dementia can be isolating, frustrating, and debilitating in its own way. Maybe you can't be there in person, but at least help her arm herself for the years ahead. Take on some of the legal research (power of attorney, will, etc.) and discuss it with her so she's prepared for a consult with an attorney.
posted by slow graffiti at 8:31 AM on March 3, 2010

My maternal grandfather struggled with Alzheimer's for a very long time. I was a young teenager when he died, and so my memories of him and of his illness aren't as sharp as they could be, but it's something my mother and I have talked quite a bit about -- both in therms of her experiences with him, and in terms of her own thoughts and fears regarding her health as she gets older.

With that in mind, I would urge you and your mother to have a frank and detailed conversation about his wishes regarding his care, particularly in the long term, while he's still fully the man you know and love. I feel terribly, as I don't want to be morbid...but after watching what my grandfather went through in the later years, my mother has very strong opinions about what she wants for herself if she's ever diagnosed. It's difficult to talk to her about, but at least I'm confident that if I ever have to make those tough decisions later on, I'll know exactly what she wants me to do for her.
posted by Narrative Priorities at 9:26 AM on March 3, 2010

Record him and his stories, the good and the bad and everything in between.

As I mentioned in another post, a local Hospice chapter has a slogan like "It's never too early." They're there to help you even if you think death is a crazy long way off. Do check in with them.

Get your own support system in place, and one for your dad. If you have a solid work environment, sit down with your boss (once you have some more of the facts in place) or discuss the situation with an employee assistance office (if the place you work has one). Being able to successfully balance work and the non-work life is a huge benefit for both them and you, so they may have good resources available.

TAKE CARE OF YOURSELF FIRST. You can't give good care to others while you're worn out and stressed. Your dad would want you to live and take advantage of everything life could offer.

I'm very sorry you and your family are going through this, but there are lots of people and programs out there to help. I hope you take advantage of them and don't keep it all to yourself. Here is the site of a woman in my area who is dealing with it and, by all accounts, thriving. I hope her story helps.
posted by Madamina at 10:28 AM on March 3, 2010

All the advice above is very good. I second the idea of firmly but gently insisting on getting the legal steps out of the way and providing for long term care options. He may be resistent for many understandable reasons, but you need to be on a team with your mom to get this taken care of early. Also broach the subject of when to take away the car keys. The loss of driving is a very powerful symbolic loss of freedom and will be very hard for your father and a burden for your mother. Your family will need a strategy for keeping him safe before he starts wandering and getting lost. A local hospice or the Alzheimer's Association Chapter can refer you to a counselor who can help with these difficult conversaions.

Time is of the essence because, though every patient progresses at their own pace, many experience periods of paranoia. Once that stage is reached, it will be harder to have these types of conversations.

Get your Mom and Dad into caregiver and early stage support groups. Find yourself a support group as well. Encourage them to gather a support system of local caregivers and sufferers around them. Start identifying sources of respite care and companionship so mom can take a break. Identify social opportunities that meet the needs of your Mom and your Dad -- kind of like "play dates."

Look to the local churches. Many are starting to grow their elder care and caregiver ministries as they anticipate the growing need. In our area we have Second Family and Gathering Place ministries. Occasionally we get requests for elder companions and we have groups with senior men, such as the Knights of Columbus, who might be a place to find someone who will take a guy like your Dad fishing, bowling, or just come to visit and provide some "guy time." They are also a potential source of rides for your Dad in a pinch.

We found my MIL's respite caregiver at a local nursing school. Maybe your mom can find a nursing student who needs a little extra money from elder-sitting.

I would also start to think, again on a team with your Mom, about helping him develop something "to do." Jobs around the house, a hobby or craft, etc. that will play on his interests, not require too much physical labor or coordination, and will be safe and not too messy. He will need some occupational resources to give him a sense of purpose. We didn't do well on that front with my MIL and we wish we had.

There is really no bright spot to Alzheimer's except for the fact that more is known now about Alzheimers', including how to slow the progression of the disease, than at any previous time. Other (not quite satisfying, maybe) positives are that your Dad's distant past will become vivid to him and so you may hear stories from him you've never heard before. You can enjoy that at least. My friend whose father died from Alzheimer's recently told me that he got to spend more intimate time with his Dad, who was more child-like with Alzeimers, than he did in his whole childhood because his Dad was so reserved and business-like when he was a child.

I don't know if you or your family are religious, but there are some good resources about spirituality of the end of life. Fr. Ron Rohlheiser writes about "Radical Discipleship" in which, after you can no longer give your life away to others (parenting, serving, caretaking, helping others) is the pratice of giving your death away, making your the remainder of your life, as much as possible, a gift to others.

I hope you and your family somehow find peace and love in and through this tragic disease. I hope you all become closer together and that you find comfort for your pain.
posted by cross_impact at 11:48 AM on March 3, 2010

I am living with my mother who is 85 and has "mild cognitive imparement" that is progressing into dementia. I chose to move in with her a couple of years ago because when I stayed with her briefly after a bad car accident (she took wonderful care of me), I realized she was having some trouble coping with day to day "running the house" kind of stuff and so, after I got well and moved back into my apartment for a few months, I realized she really would be better off if I moved in.

In April of last year she had a fall and experienced a "buckled pelvis" and after that really went downhill cognitively. My brother was "between jobs" and did an outstanding job of getting her back into tip top physical shape. The doctor did a full medical work up heart, circulation, checked for stroke, etc. and once all the other possible causes were eliminated, they gave us the "cognitive imparement" diagnosis. We have her on Namenda and Exelon and those seemed to have slowed down what was a precipitous and frightening decline.

She has happily turned over all her financial stuff to me and my brother (I do most of the day-to-day account management). We had a women recommended to us who is an Elder Care consultant and for $200 she helped us work up a plan for caring for Mom, made a list of the things we needed to get in order (all the legal stuff mentioned above) and helped us find a homecare service that provides someone to come in every morning and take Mom for a walk, make sure she's had her mid-morning meds, feed her lunch, take her to appts. etc. It is a huuuuge relief to me and the best $200 ever spent. She gave us big labels to put on the kitchen cabinets to remind Mom what's inside and we've got notes on the bathroom mirror coaching her on basic care stuff. Fortunately Mom is able to get around just fine and doesn't show signs of wanting to wander away on her own at this time.

Mom had long-term care insurance through AARP/Metlife--I am finding them a pain in the butt to deal with. Excruciatingly slow and they have all kinds of exceptions and rules that lower what they are obligated to pay. It is fortunate that my Dad left Mom well-provided for so we can make up the difference. We are very lucky.

I have a friend who is in a very similar situation and if I didn't have her to vent to, I would go crazy. We remind each other that the forgetting and other weird fixations and stuff is not done deliberately to mess with us (seriously, it is easy to forget momentarily and get angry--at least for me). If your Mom doesn't have a close friend, you should definitely help her find a support group to connect with. Sanity checks are important.

I also am trying to be good about taking time for me. I coordinate nights or days off with my brother and sister-in-law who live nearby. But mostly it's me and Mom and I can see how easy it would be to become isolated if I didn't have to come to work each day.

The other big thing for me is to remind myself that this is not necessarily my fate. I tend to be more Eeyore than Pooh and it is easy for my to get into a funk imagining this as my future.

Mom gets scared and annoyed at herself. She is very social and has always been involved in the community. It was very sad when, recently, the new President of our Homeowner's Association came by and told her that he wanted to honor her at the big annual meeting last month and tried to get her to remember the early days of the neighborhood, some of the early political battles over open space, water, etc. She couldn't do it and I could see her getting upset, so I had to invite him to leave. They ended up naming an award after her, but she didn't want to attend the meeting because she was embarassed. My sister-in-law went in her place. Those kinds of things are really hard to watch.

So, we are getting into kind of a Zen place and living very much in the present. My Mom is tiny (under 100lbs) and her sense of taste is disappearing as is her appetite, so I set myself the challenge of making tasty nutritious meals that tempt her to eat and give her pleasure. Lots of fish and dark colored veggies cooked in interesting ways. She also takes huge pleasure in my nephews and their various accomplishments and, though never a TV watcher, I now have her hooked on Amazing Race and Project Runway.

So, I guess I'm saying it is sad, but there are bright moments and the advice about taking care of the legal stuff no matter how painful and taking time for oneself are absolutely necessary and give you the ability to find the joy in the situation.
posted by agatha_magatha at 1:23 PM on March 3, 2010 [1 favorite]

My father's descent from brilliant man newly diagnosed with early onset Alzheimer's to helpless near-invalid took place so rapidly that four years after his death, it's still painful to talk about. Our fellow mefites seem to have covered a lot of that ground anyway, so on the purely practical side I'll just say start thinking about who "owns" the assets.

When my mother could no longer handle my dad and started looking into full time care for him, we were surprised to find out just how far some of these institutions "looked back" at their finances to find out their capacity to pay.

That said, my deepest sympathies. Speaking from my own experience, in the long term the most important thing you can do is to be supportive of your mother...the burden of caring for someone with Alzheimer's is not something I'd wish on an enemy, much less family.
posted by JaredSeth at 2:25 PM on March 3, 2010

Remember that every person's impairment is different. But one of the common things I see is that one's sense of self and dignity doesn't change at the same rate as their other cognitive functions.

My grandfather, for example, will occasionally get lost, realize it, and struggle to read clues to get back on track with the conversation. I (imagine that I) can see it in his eyes. Humiliated that he suffered a lapse and almost in a panic to get back into sync. The best way I've found is to keep the conversational tone or pattern the same, but do a quick reframe in order to get him back with us. Or if he's having trouble remembering a word, behave exactly like you would with someone who isn't diagnosed with an impairment- give them a moment to try and remember, and like you would in any other conversation, try to think of the word they are looking for. Almost like how you work with someone with stuttering- allow them the dignity to work it out for themselves, but also give them a dignified "out" when it's not looking good.

(Also the same way you deal with someone with hearing issues- when they make the "I didn't hear that" face, just repeat what you said louder. Nothing is more frustrating than *almost* hearing something, and then having someone repeat what they said with different words. You know, like when a waiter asks "soup or salad" and then an exasperated family member says "DAD HE WANTS TO KNOW WHAT YOU WANT WITH YOUR SANDWICH" and dad replies "pickles". Now everyone is uncomfortable. If the exasperated family member had just said "SOUP OR SALAD" everything would be fine...)

In other words, as you and they struggle with the difficulties, always give them the dignity benefit of the doubt. While they might not cognitively be "in the room" with you, emotionally they may well still be.

I don't know if this works, or where I heard it, but I have heard of where you tell your loved one a couple of code words ahead of time that they can use when another one is lost to them. This (supposedly) allows the brain to build new connections "Dad, if you ever need to go to the bathroom and you are having trouble saying so, just say "bananas" and I'll know what you mean." Or even "if you ever need to tell me that you are there and can't find any other way, say "Oldsmobile" and I'll know you are there."

Goodluck and godspeed.
posted by gjc at 7:56 AM on March 4, 2010 [1 favorite]

I'm so sorry. My dad was diagnosed with frontotemporal dementia a little over a year ago, and has been in care for 9 months.

You'll want The 36-Hour Day : A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life. There are many other good books but this is widely acknowledged as one of the best and most comprehensive. In some cases you get it automatically with diagnosis or as part of a support group.

Cover the legal bases. Cover the financial bases. There are lock-outs, there are look-backs, and you need to make sure your mom is not left destitute, so get a lawyer with experience in the area now to help you navigate.

The idea of Alzheimer's never crossed my mind; both my parents are very intelligent and (was, I suppose, for my Dad) erudite and I never would have imagined this.

Alzheimer's has some suggestive connections to intelligence and intellectual activity levels, but nevertheless strikes a wide variety of people regardless of their accomplishments. Heads of state; artists; scientists. Your father is still your father, and his mind is still his mind for now, but the disease will rob him of much that you love and admire about him. This is a task of acceptance that you must prepare for.

Your dad will probably continue to lose language ability. You'll need to prepare for loss of safe driving ability and the ability to work at his present job. A sympathetic employer may be able to re-place him in a position where he can remain effective; many early-onset patients are only diagnosed after a loss of job or career or financial implosion, though.

Medically, I would pursue this diagnosis. If it came from a specialist, make sure they look at other causes in your father's age group. (In most cases they will.) Ultimately there is a consensus that Alzheimer's and related dementias are complex syndromes, often with unique presentation in individuals. Some of them can mimic others at early stages. Getting the right diagnosis is important for your understanding as caregivers and for planning for the future.

If your father did not have long-term care insurance, you are going to have a very serious mountain to climb in terms of managing his care, both at home and later, when home becomes impossible. Prepare yourself mentally for that. Even Social Security and Medicare can be a problem.

This must also be said. Early-onset Alzheimer's -- more than the typical later type -- is more likely to be genetic. Screening may or may not be possible. You need not dwell on this but it may affect your life choices.

Take heart, though -- it sounds like you still have many years with your father left. They may be difficult years, but for now, you'll simply be presented with small hurdles to overcome. You have time to enjoy your life together and to plan, and this is invaluable.
posted by dhartung at 7:27 PM on March 4, 2010

Thank you everyone. I appreciate all the support and advice and sympathy you have offered. Thank you especially to those of you who MefiMailed me your thoughts.

My parents have gone to get a second opinion from a neuropsychologist (? I think), who seems to disagree with the original diagnosis. There are more tests and scans to do and we won't know for two weeks, but there is a chance that this isn't Alzheimer's.

I'm trying not to get my hopes up but it's difficult - the mind wants to latch onto the best possible outcome and refuses to let go, no matter how small the chance.

We shall see.
posted by subbes at 5:05 AM on March 5, 2010

The feedback from the neuro-psychologist was a mixed bag - the CAT scan was OK, but my dad doesn't fit any of the diagnostic criteria they have. They've referred him to another doctor. On the plus side, this does suggest that it may not be Alzheimer's, which we're all cautiously relieved about.

These past couple of weeks have been a real roller-coaster. My mother is absolutely livid at the first doctor who blithely told her it was almost certain that Dad had Alzheimer's; I suspect she may write a strongly worded letter.
posted by subbes at 2:03 PM on March 15, 2010

DISREGARD LAST COMMENT AND SENSE OF CAUTIOUS RELIEF.

Having read through the report of the assessment, the other doctor says frontotemporal dementia, which is not any better than Alz, just a different incurable, terminal, debilitating dementia.

Hooray.
posted by subbes at 5:37 PM on April 2, 2010

I'm so sorry. You and your parents have been and will be in my thoughts.
posted by sallybrown at 6:08 PM on April 2, 2010

I'm so sorry to hear that. If I could reach through the internet and give everyone in your family a great big hug right now, I would.
posted by ocherdraco at 6:25 PM on April 2, 2010

Having read through the report of the assessment, the other doctor says frontotemporal dementia, which is not any better than Alz, just a different incurable, terminal, debilitating dementia.

Hooray.

hooray indeed. When my mom got her diagnosis (PSP with frontotemporal dementia), her first reactions were relief and vindication. She'd been taking her Parkinsons meds faithfully but getting worse instead of better. She felt people were holding her failure to improve as directed against her, as if she were deliberately confounding her diagnosis.

So here's a big hug for you ((((((subbes)))))). My mom made a good end, and gave her body and brain to science. Best wishes to you and your family, and feel free to memail me any time.
posted by toodleydoodley at 6:42 PM on April 24, 2010