This is my current "State of the Art Answer" to "I think my _____ has memory problems...what do I DO?" I will update this document periodically.
My name is Allan, and I've spent a hellish three years taking care of a mother with advancing dementia.THINGS TO LOOK FOR.Routine Task Difficulties:
The first informal signs of memory problems are difficulties in performing routine tasks.
In my mother's case, the signal that I didn't know to pay attention to was her calling to tell me, "The ____'s broken." The list of "broken" items got longer with each call, and my visits to Chicago (from the SF Bay Area) became more frequent. This started off as an inability to work the TV remote control. (I have since discovered from multiple sources that this is a common early symptom).
From there, Mom lost abilities pretty steadily over a two year period, including the ability to...
- work a simplified TV remote;
- change batteries in her tabletop radio (which she carried around with her from room to room);
- remember what she'd previously bought, resulting in multiple units of the same item being purchased for several weeks in a row;
- work her computer;
- work the same model of fax machine she'd been using steadily for ten years
- work the microwave;
- balance her checkbook;
- find her way to her doctor's office two blocks away (so she took a taxi there and back instead).Repetitive Actions:
My mother has urinary incontinence, and she obsessed over it to the point where she was buying pads automatically nearly every time she left the house...even though she had plenty of pads in stock. (When I shut down her condo, I found nearly THIRTY packages of pads stored in every conceivable nook and cranny of the house.)
While I didn't find any rotting food in fridge during the condo shut-down, I did find multiple packages of frozen and dried foods that she'd bought without remembering she already had plenty at home.Repetitive Conversations/Conversational Fixations:
If your loved one asks you the same question in a comparatively short time...that's a signal of possible memory issues. Another way this sometimes surfaces is your loved one talking about the same thing over and over and over and over and over and OVER again. Increasing Reminder Notes:
My mother used to keep all of her appointments in an engagement calendar. Then she started forgetting to put appointments into the calendar...so she started missing medical and dental appointments. To "fix" this, she started leaving notes for herself on the inside of the front door. Then she started leaving notes on the front door AND on her bathroom mirror.
Leaving a single reminder note is normal. Leaving multiple reminder notes plus an engagement calendar entry is not
normal memory behavior.
Also...forgetting to take down old reminder notes is not
normal memory behavior.Increasing Injuries:
I was mystified that every time I visited my mother, she had bruises and scrapes and cuts. Over time, I found out that she'd "fallen somewhere", and had forgotten the exact where and when. Some of the injuries were due to her not remembering how to walk properly. As time progressed, it became clear that Mom had forgotten how to use her cane, which she eventually just kind of dragged along on the ground as she attempted to walk. Fugue Behaviors:
I noticed that under stress, my mother started giving the appearance of going into some kind of a mental fugue state, where she wandered around the house looking lost and not saying anything. I nicknamed this her "Mindless Wandering Zombie Cow" face, because that's what she looked and acted like...except I think most zombies moan a lot, and she was pretty much silent.
In retrospect, I'm quite ashamed of my behavior early on in the moving process, long before I'd even heard of Compassionate Communication with the Memory Impaired.
During the early stages of getting Mom ready for the move, I worked with her to sort books onto "to be moved" and "to be left behind" shelves. At night, she would start wandering around the house moving books around seemingly at random, undoing or screwing up the work she and I had spent several hours on. I figured she was either faking or deliberately trying to make me mad, and I resorted to yelling at her to break the fugue.
Three and a half years later, I now know that's not what she was trying to do. She was most likely trying to make things look like the mental image in her head, and was almost certainly unaware that she was doing it. This is why CCwtMI
stresses the points "They're not faking, they're not crazy, they're not trying to upset you. They really can't remember
I later discovered that in times of stress or when a decision about something is required, people with memory issues will often appear to "fugue out" like this. That's when they need gentle handling, including moving them to a comfortable seat and speaking with them in soothing tones, repeating a question or statement exactly the same way
over and over again until they either snap out of the fugue or at least cease the fugue behavior.Irrational Behavior/Justification/Explanations:
The night before I flew her from Chicago to the Bay Area, my mother evidently went into a fugue state while I was sleeping. She woke me up at 4:30 AM screaming hysterically that we'd had a burglar.
When I awoke sufficiently to question her, I found out that "a burglar" had "snuck in during the night and stolen" all of Mom's packages of incontinence pads.
Glaring at her, I walked out to the hallway where the suitcase I'd helped her pack the night before was lying on its side. Opening it, at least half a dozen packages of pads popped out. (To this day, I have no idea how she managed to close the suitcase lid with that much spring-loaded pressure from packages of pads. I suspect she sat on it.) "THERE'S your f___ing burglar!" I yelled at her in frustration, and tried my best to go back to sleep for a couple of hours .
Memory impaired people will often accuse external agencies or other people of taking or doing things that they can no longer remember doing or observing. One example which I've heard many times: memory impaired people will accuse family members of stealing something that they themselves have thrown away or stored somewhere.
When this happens, the loved one isn't being an asshole. They can't remember, and this is the most logical explanation that their brains can come up with. No matter how absurd their contention may sound to you, remember that to the failing memory centers in their brain, it's perfectly obvious and logical.LEGAL RAMIFICATIONS TO CONSIDER.
Once your loved one is formally diagnosed with dementia or Alzheimer's, depending upon state/provincial/federal laws, they are very likely to be considered "not legally competent".
Prepare for this now
by making certain that the following documents are in order, because once your loved one is considered legally incompetent, doing everything becomes ten times harder when you must go through the courts. Set up these documents now:
Last Will & Testament. Gotta have it, and gotta have it signed before your loved one is officially declared not competent. Gotta have it witnessed by someone who is not named in the will and who is not a family member. (E.G., a lawyer or notary public.)
Power of Attorney. Also gotta have it, or every medical, legal, or housing decision you attempt to make for your loved one will be contested. You will need at least one other person that you trust to be named as an alternate POA holder.
Healthcare Power Of Attorney / Living Will. The name and scope of this document changes from state to state, province to province, or country to to country...but you need a document which spells out precisely what is to be done medically for your loved one at end of life. The three big decisions which must be explicitly spelled out:
1. Should extraordinary measures be taken if they need to be resuscitated?
2. Should they be kept on life support?
3. Should they be kept alive via tube or IV nourishment?
In California, this is called an "Advance Healthcare Directive", signed by the loved one and witnessed by at least one other person (such as a notary public). Other states and provinces may use a different name. Ask a lawyer."POLST" (Physician Orders for Life Sustaining Treatment).
This document is signed by the patient (or responsible party) AND the patient's physician, and is kept at home to be handed to paramedics or other emergency personnel in the event that your loved one must be taken to the hospital.
I suggest keeping the POLST--which in California must be printed on neon-pink heavy paper--taped to the back of the front door (I keep my mother's in a plastic page protector to avoid tearing). There was a similar regional effort called "Vial of Life" which was essentially a POLST like form taped to the refrigerator door. However, taping the brightly colored document to the inside of the front door ensures that emergency personnel will see it.
The POLST is important because in a medical emergency, your loved one will probably not be able to communicate their wishes to the emergency and medical personnel.
There is excellent information on the POLST program at http://www.polst.org/
, including detailing which U.S. states have POLST programs, and where to get more information.Meds & Doctors List.
This is a freeform document listing (1) all of the medications your loved one is taking, (2) emergency contact information (stating if a contact holds a power of attorney), and (3) contact information for all of their doctors.
Medication information should list:
- Medication name
- Frequency of Dosage
- Condition being treated
- Doctor who prescribed it
In an emergency situation, the EMT and hospital ER staff will be able to help your loved one substantially faster if you hand them this document first thing. I carry a copy of the current version of this document folded up in my back pocket, to hand to ER personnel at the hospital.
Note: This would also be a good document to put behind the POLST form in the plastic page protector taped to the inside of the front door. Make things easy for the hospital so they can make things easy for you.
I use and periodically update a simple Word document to record this information. It need not be fancy; it just has to be easily readable in an emergency.Bank Accounts & Stock Funds: Speak with a qualified attorney for your state/province about this
, but one of the things that Mom did shortly after Dad died was to put my name onto all of her financial accounts.
For example, she added me as a joint accountholder to her bank account, and her investment accounts all bear both of our names with the legend "JTWROS", which means Joint Tenants With Right of Survivorship.
This means that in the event that Mom predeceases me (which is highly likely), these accounts will not be suspended and/or have to go through probate.
My mother and I also added me as a full joint account holder onto all of her credit cards, so that I would be able to track her account and work with the credit card company if any fraudulent charges manifested. It also meant that I was able to have a credit card issued on her account, but in my name, which I could use for items such as medical copayments, shopping for incidentals, or taking her out to eat. This proved to be much easier than having to track who owed how much money to who for what.Go Electronic:
Right after my father died, leaving just my mother and I (no siblings), I made a point of starting up an email account for Mom and established online accounts for everything...starting with her bank account so I could maintain her checking and savings electronically from anywhere, and adding (free) bill payment.
I also opened up online accounts for all of her credit cards, magazine and newspaper subscriptions, condo association, and anything that might need a bill paid or research performed from somewhere other than Mom's home office. (She was still living in Chicago at the time, while I was in the SF Bay Area.) I purchased a cell phone for Mom from Consumer Cellular
, a very senior-friendly cell phone company (Jitterbug
--now owned by GreatCall-- is also a senior-friendly cell phone company)
Doing this made monitoring Mom's finances and supporting her daily activities from a distance very easy for me. When it was time to move Mom, all I had to do was sit down in front of my computer and run through a checklist of vendors/suppliers/accounts to initiate changes of address and service.
WHEN YOU FIRST SUSPECT MEMORY PROBLEMS.
The most important thing to do when you first begin to suspect that your parent (or other loved one) has memory issues, is to TAKE (not "send") them to a neurologist for evaluation. Not their primary care physician, but rather a neurologist specializing in memory issues. That means you (or a spouse or a sibling) must make the appointment and escort her to the office and walk in with your loved one to see the doctor.
Other than being requested to leave the room for her memory evaluation, you must accompany your loved one at all times during the neurological appointment. Seniors in early stages of memory problems will go through intense denial, and will do or say anything to avoid having their own fears of "losing it" confirmed medically. I would go as far as saying: You cannot trust them to give complete and accurate information to a doctor or nurse on their own.
Once you know what's wrong--dementia or Alzheimer's--you can start to plan out what happens next.If you are a member of the Kaiser Permanente HMO,
be aware that KP has a superb memory clinic
...but it's not well-advertised. If your loved one is in Kaiser, ask their Primary Care Physician for a referral to your nearest memory clinic. A substantial amount of the great advice given here came from my mother's assigned social worker at a Kaiser memory clinic. These folks know their stuff, and do a great job.BUT WHAT CAN I DO TO FIX IT?
Uhhh...you can't. This is not something that can be fixed. The best you can do is fight a holding action, with the certain knowledge that you WILL lose.
The harshest and yet most useful advice I've eve received on this subject: By the time your loved one has started to show symptoms of memory loss, be aware that the person you knew is more or less already dead.
Oh, the person who's smiling at you from across the table may look and sound like your loved one, but their personality, intuition, and knowledge are slowly being whittled away from the inside. There are still pieces of your loved one "in there", but the complete person you knew is dead. As long as you keep trying to "save" the whole person who's no longer there, you'll be ineffective at taking proper care of them. You must shift your head from trying to "get them better" to "making them comfortable during a terminal situation".
Be aware of a few things:
1. You can't make them better, and they won't get better.
2. You can't stop them from getting worse (even with the drugs, which just slow the progression).
3. There are no miracle cures, such as standing on one's head while eating roasted grapeseeds, or performing special exercises, or doing crossword puzzles backwards. (There will always be someone who will attempt to tell you that memory problems are easily cured "if only you...". THERE IS NO "IF ONLY". Memory problems are not presently curable by medical science. END OF STORY.)
Most everything else that needs to be said is already in the "Compassionate Communications with the Memory Impaired" document, a copy of which I've posted at:BUT...THERE ARE DRUGS!
Yes, there are, but they don't cure memory loss; they can only slow it down. Don't place your hope on drugs fixing this problem.
There are a couple of classes of drugs for Alzheimer's that can slow (but do not completely stop
) the progression:
These drugs are generally utilized in the early to moderate stages, which is why it's so important to TAKE (again, NOT "send") your loved one to a neurology specialist for evaluation and prescription.
Bluntly spoken: to date, there are NO DRUGS OR TREATMENTS which have been proven able to reverse memory loss.MOVING THEM AFTER DIAGNOSIS.
Your loved one should not live alone any longer. After they've been evaluated by a doctor, you'll need to find a place for them to live that promotes and understands the words "memory care".
In general, there are three types of senior facilities:
1. Independent Living.
Some of these offer memory care. Many of them specifically will not accept residents with dementia or Alzheimer's, so you need to use the magic words "memory care" when asking about a place for your mom. These are pretty much full apartments with kitchenettes or occasionally full kitchens that offer a common dining room and three meals daily, plus extra assistance as needed.
2. Assisted Living.
Again, the magic words are "memory care". AL apartments usually have minimal individual kitchen facilities.
3. Skilled Nursing.
What everybody else calls "nursing homes" or "rest homes". The residents here are largely non-ambulatory, and require assistance for even the most basic of tasks.
4. There is a variant somewhere between #2 and #3, called a "Board & Care
". B&Cs are generally large private homes with anywhere from 4 to 10 beds and a large common area with a couple of staffmembers on duty 7x24. Pricing for B&Cs is usually substantially lower than other options. Residents tend to be moderately or fully non-ambulatory, and largely non-interactive, with low to no longer visible cognitive abilities.
My own mother has been shifted over the past three years between multiple facilities, mostly because I didn't understand until after I'd moved her near me from Chicago just how bad her memory condition was, and didn't understand anything about dementia or Alzheimer's.
1. From her own condo in Chicago, I moved her to:
2. An independent living facility in Fremont, CA (Carlton Plaza), where she met a boyfriend who subsequently punched out another resident and was evicted. She begged me to let her move with him to:
3. An assisted living facility in Fremont, CA (Fremont Hills), which turned out to be a huge mistake. My mother was too verbal/vocal for the facility, and she and the facility detested each other on sight. It wasn't a good fit, and I never would have placed her there if it wasn't the only place that would accept Mom's then-boyfriend. My mother was evicted after five months for "disruptive behavior", at which point I moved her to:
4. An assisted living facility in Sunnyvale, CA (Belmont Village) which specialized in memory care. Mom spent a comparatively happy year here, although during this period she literally forgot how to walk (look up the phrase "impulse control" in association with "dementia" for more details), and kept falling with increasing frequency.
Mom's continuing falls led to a chilly note from her doctor, who implied that perhaps I had placed Mom in a substandard facility that was neglecting her. A visit with Mom to the doctor proved that it wasn't the facility causing the falls, it was Mom's memory.
Mom was given Physical Therapy (which didn't work because she couldn't remember what the PT taught her), and continued to fall until she fell one Sunday afternoon and fractured FOUR ribs, which is generally considered fatal for seniors.
Somehow, she survived two weeks in the hospital, was discharged to a nursing facility for temporary rehab and PT, and then I moved her to:
5. A Board & Care which *only* takes residents with dementia or Alzheimer's. It's about $2,000/month cheaper than Belmont Village, and Mom hasn't fallen even once. (They take precautions such as performing bed checks all night long, and also pre-emptively toilet all seniors with incontinence problems in the middle of the night to avoid their getting up and wandering in the dark.)
There's a long and exhausting discussion I still need to write about the financial aspects of each of the above. Assisted Living memory care can easily run $7,000+ a month, and Skilled Nursing Facilities from $150 to $350 a day,
depending upon geographic location. Only Skilled Nursing is generally eligible for public assistance in the U.S., called Medicaid (or MediCAL, in California).
There is a huge
list of rules and regulations and qualifications for Medicaid/MediCAL housing, and it's too much information to publish here. In general, your loved one (or your family) will need to pay privately for any memory care until all of their money is exhausted and
they have met all qualifications for a Medicaid/MediCAL Skilled Nursing Facility. That means if they're still ambulatory, they may not qualify for Skilled Nursing (and therefore public assistance).
If your loved one or their spouse served in the military during one or more periods of military action (e.g., during a war), they may be eligible for veterans' benefits. However, the periods of eligible are very specific. My father served in the Navy with distinction, but he did so in the period between two "eligible" wars (Korea and Vietnam), so no benefits were available.
Some fraternal organizations (notably the Masons) maintain free or low-cost memory care housing for seniors who were members, or whose spouse was a member.
There are also some religious organizations which maintain senior housing, but rarely memory care housing.SUPPORTING YOURSELF.
It is imperative that you find a local resource for yourself such as a support group for caregivers of people with dementia and Alzheimer's. This is super-important for YOU.
Please note that all of the really cool stuff I've learned so far sprang from attending my first memory caregivers' support group (staged by the City of Fremont), which is where I learned that Mom's HMO, Kaiser, had a "hidden" memory clinic that did superb work, but which was only available if you knew to ASK for it. (The key words for most HMOs and other insurance programs: "memory clinic" or "memory care".)WHAT HAPPENS DURING A NEUROLOGICAL EXAM.
At the Kaiser Memory Clinic, my mother and I were split up by the neurologist, who took Mom into a separate room to administer a physical and memory exam, and the social worker, who took me into her office and handed me a copy of "Compassionate Communication" and gave me a rundown on what to expect when caregiving for a parent with serious memory problems.
After the exam was done, all four of us (doctor, social worker, Mom, and I) sat down together and discussed the results of the exam, and worked out an action plan. I then discovered that the reason that we were separated was to keep me from "feeding" information--even accidentally/subliminally--to Mom while the doctor asked her questions such as "What day of the week is it today?" and "Who's the president?".ONGOING SUPPORT.
I have continued to consult with the social worker, both in person and via email/telephone. I periodically take Mom in to see the neurologist. The Alzheimer's Association website listed at the top of this command has some incredibly useful information if you're willing to take the time to dig through the site.
I hope all or at least some of the above helps, and please let me know if there are any questions I've not answered. WHAT YOU CAN REASONABLY DO.
In the end, there are only THREE THINGS you can for your loved one:
1. Make sure they're somewhere that she's physically safe, both from themself and from the outside world.
2. See that they're kept as comfortable as possible.
3. Give them lots of love and reassurance on a continual and regular basis.
That's it. That's what all of your responsibilities as a caregiver boil down to: "Safe, Comfortable, Loved". Anything that doesn't further at least one of these goals is something you're probably better off not expending energy on.
On the flip side, and unfortunately, the logistics of achieving
those three goals can be pretty daunting...hence, my imperative suggestion that you find and attend a caregivers' support group.
Taking care of my demented mother is the hardest thing I've ever done, and I wouldn't wish a similar situation on anyone. It's stressful and disruptive and heartbreaking.
There are no happy endings to dementia or Alzheimer's, so the best you can do is to try to make the journey as easy on yourself and your loved one as possible.