THE BEST OF CAREGIVER TIPS

Although there are countless books and websites to help you through caregiving, and in this section, I will list many for you, I am especially partial to the tips that come straight from the trenches – from you, our readers. That is what you will find in this section – your own tips and suggestions – Based upon the Message Board Discussion that Trisinger started that was titled, "Things I wish someone had told me back in stage 2-3." A GREAT BIG THANK YOU TO OUR READER, JANET, WHO TOOK THOSE TIPS AND LISTED THEM FOR ME, SO I WAS ABLE TO ORGANIZE THEM INTO TOPICS AND TO TRISINGER FOR STARTING THIS DISCUSSION TOPIC IN THE FIRST PLACE.

Remember, this is a work in progress. Please keep sending in those tips under the EXISTING Message Board Discussion – "THINGS I WISH SOMEONE HAD TOLD ME BACK IN STAGES 2-3".
and I will organize and add them here.

So here we go – Alphabetically, of course:

Acceptance
There will be personality changes that alter your relationship forever.

Keep telling yourself, One Day at a Time. Then tell yourself that, "I AM NOT ALONE" because you are not - you have all of us.

Your new mantra should be: I didn't cause it; I can't fix it; I am doing the best that I can.

I wish I could have kept him home, I wish I had been there holding his hand when he died. But mostly, I wish I had been kinder in the early stages. It took me too long to "get" on a deep level, that he wasn't doing any of this stuff to be difficult, to make me angry, or drive me crazy. I WISH I HAD LEARNED EARLIER TO LET MY NEED FOR HIM TO STAY NORMAL GO. I wish I had given up trying to control the situation, to find a "cure" or a "solution." With Alzheimer's the only solution is acceptance. I wish I had turned my energy to loving him through it, sooner. When I finally got there, things got a little easier - my life was still chaos and misery, but I didn't take it so hard. Once we stop controlling the situation things get easier.

Activities
If you can find a hobby that they can do sitting down that takes concentration (jigsaw puzzles, model kits, etc.), having them do these not only keeps them occupied, but helps with mental exercises.

AD proof the house
A four-inch long strip of duct tape holding the refrigerator door shut prevents AD LO from getting into trouble between scheduled meals.

For outside doors try the "old fashioned" childproof rubber devices that were placed over the doorknob. You can also use chain locks on the outside doors in addition to the regular dead bolt door locks - the kind like a hotel room has with the sliding detachable chain on the inside. Sometimes if you move the chain lock up or down they don’t see it.

Arguing/Reasoning/Redirecting
Do not try to reason with them. The reason switch is busted and cannot be repaired.

If they are trying to do something that you don't want them to do or is bad for them, redirect them by asking them to help you get something, or asking them if they would like something to eat or drink, etc. - don't argue with them as it increases their anxiety and stress.

Don't try to reason with an enraged person, walk away.

Do not have a battle of wits with an unarmed man (women) this is not meant as an insult. It is just a catchy way of saying, AD has affected their thought process and they cannot reason any more. Learn this early, it will prevent many bumps from banging your head against the wall. Distraction is key.

If they don't want to take their meds "right now", try again in about 15 minutes.

My husband is in a facility now but they have taught me a very important lesson in dealing with the disease. It is simply if they are not getting hurt or hurting someone else, anything goes.

Bathing

CLICK HERE for excellent article on bathing tips.

Pool shoes with non-slip soles can be used to keep from slipping and falling in the shower or tub.

Books
Read the Frank Broyles book on Alzheimer's. (It is free through the Alzheimer’s Association.) Also read "The 36 Hour Day." Both give such insights into how they are thinking and what you can do to make your life easier. Joan's recommendations are below - you can click on the title for purchasing information.

When The Doctor Says "Alzheimer's": Your Caregiver's Guide to Alzheimer's & Dementia (Paperback)
by Betty Weiss

A Caregiver's Guide and Sourcebook - Howard Gruetzner

Alzheimer's Disease - 300 Tips by Callone, Kudlacek, Vasiloff, Manternach, and Brumback

The 36-Hour Day  by Nancy L. Mace,M.A. and Peter V. Rabins, M.D., M.P.H

The Alzheimer’s Action Plan By P. Murali Doraiswamy, Lisa P. Gwyther, Tina Adler

Alzheimer's Early Stages: First Steps for Family, Friends, and Caregivers – Daniel Kuhn

A Dignified Life: The Best Friend's Approach to Alzheimer's Care by Virginia Bell and David Troxel

When Someone You Love Has Alzheimer's-by Marilynn Larkin

 Learning to Speak Alzheimer’s  by Joanne Koenig Coste

Caregiver alert bracelet
When I had my first TIA stroke I was unable to speak, so was not able to alert anyone Lynn had AD. It got me worrying, what if something bad happened? Who would care for him? I now wear a bracelet that informs I am the caregiver of Lynn and that he has AD, and he has one as well – but he won’t wear it. The local police also have this information on file ... just in case.

Caregiver anger
As your sensitivity to things people say/do increases you may lash out and, in the process, lose some friends. But those who know you...really know you & love you, will continue to be your friends, forever, in spite of what this disease does to you as a person.

Caregiver relief
Remember you are entitled to have a life. While you can still leave your LO home alone go out and do some errands, visit with a friend, figure out what your interests are and spend time on something just for you every day.

Whenever someone offers any sort of help, my job is to remember to say YES. I was trained never to ask for help, so it isn't as easy as it sounds. Insert from Joan: - I tried it, and it works. This section never would have gotten done if I hadn't asked for your help - Janet responded, and here it is!

Caregiver strength
Keep telling yourself, One Day at a Time. Then tell yourself that, "I AM NOT ALONE" because you are not - you have all of us.

Your new mantra should be: I didn't cause it; I can't fix it; I am doing the best that I can.

Some of you will find you will cry a lot as you watch your spouse get angry, take things out on you, refuse to do what you know needs to be done, and the fact that you are losing him/her - or you won't cry at all - because of what you have already been through or because you need your strength to get you through this terrible journey.

Cell phone directory
I would correct his telephone directory on his cell phone in case he wanders or in case of an emergency and a stranger finds him and wants to contact me…instead of Judy (wife), instead of Bob (son B) instead of Dr. Smith (doctor) and make all the names easy to understand by anyone that they are family members or doctors, etc.

Does everyone have ICE in their cell phones? Here's an article:
       http://www.komonews.com/news/archive/4157861.htm

Child like Stages of AD – developmental
Just like a toddler, there are "stages." I am not talking the stages 1-7 on the Alzheimer’s Association website. I'm talking LO is trying to leap out of a moving car, or LO is accusing you of stealing their stuff. It's a stage, like toddlers biting, and it will last a few months and then subside. You can outlast the stage!

Your LO is the equivalent of a giant two year old. If you have had children, you will find yourself working in that same mindset. The hard part is you can't send them to their room anymore!

Clothes
Look at everything in your house and in your spouse's regular routines and see what can be simplified to get them used to the changes while there's still a chance that they'll accept them and remember them. I bought the pull-up trousers and pullover shirts before he could object or not learn how to deal with them; now they're accepted.

Decision making alone
Sooner or later, whether you want to or not, you will have to take over and be in charge of EVERYTHING.

Your spouse will tell you that you are doing at least one of those things wrong, even though they are no longer either interested or capable of doing it themselves.

Your spouse will no longer contribute or offer feedback on any decisions you make.

Your spouse will not realize how much you have taken over.

It feels funny to "be firm" with how you work with their behavior, but you must realize you are the adult now. What they want or don't want is going to be less and less up to them.

Dentist
Keep up with dental visits. They only get harder, and it's better to do as much cleaning as you can before your visits are through.

Directions – giving directions

Don't assume they understand how to do simple things to help out around the house, such as doing the dishes. They at some point will forget they are supposed to use hot water.

Don't just ask them if they have showered or brushed their teeth. The answer is always yes, but that doesn't mean that they still remember to use soap and shampoo, or that brushing the teeth means to use a toothbrush and toothpaste.

They will forget how to wash their hands, so if you help them when they do, that ability seems to return for days, then you will have to help them again, and once again, that ability will return.

Don't assume if you say "go get into the car" that they will. You may travel down the street before you know it!

Disability

Look into disability and stuff right away. To get disability, you have to have stopped working fairly soon before the diagnosis. The whole point is that it keeps you from being able to work.

Doctors
Don't be afraid to try a different doctor if you don't feel you are getting the help YOU need. Doctors forget that, in order to fully help the patient, they must address the needs of the caregiver.

Emergency Information
If you have not gotten a Durable Power of Attorney, Wills, SSI (if under 65), VA benefits (if entitled), Emergency Information sheets prepared and placed in wallets, cars, and on the refrigerator (to include medications and dosages, insurance information, doctors and their numbers, etc.), along with having your spouse give permission in writing for you to communicate with bank accounts, credit cards and loans, you need to do so while he/she is able to sign off on these important items.

Eyes
The depth perception goes early. When they refuse to take a bath, it may be because they can't see the tub bottom. Try colored bath salts or bubble bath.

Take your spouse to the eye doctor while still pretty good at going through an eye exam for his glasses. The eye doc said this way if he changes quickly he has a script on hand to reference.

Family
Do encourage family to stay involved. If visiting is too much for them to take, phone calls and their own personal mail is always a mood booster.

Food
The desire for sweets and salt (nuts and/or chips) increases and they will hide them from you. They will over-indulge if they can. They are becoming child-like about this.

There may be loss of sensation of hunger or thirst. Your spouse may not eat or drink unless prompted.

There is no such thing as leftovers-every meal is a new adventure

Don't waste time cooking a big meal that you used to love! Sadly, they will be unable to appreciate it and it would probably have been best to just get a Subway Tuna on Honey Wheat...After all, they are just $5.00 right now for a foot-long...you can share it!! :)

Cook the meals you love that your LO didn't much like. It just doesn't matter anymore.

Hallucinations
Scary nighttime hallucinations can be suppressed with Seroquel.

Home Help
There are doctors AND dentists who will come to your home to do checkups and give care! And they take insurance and Medicare!

Hospice
You can get Hospice help way before you think you can. Look into it!

Hot Water
If you haven't adjusted your hot water heater so pure hot water is not hot enough to scald, do it now. When you have it adjusted, after a few hours so you know it has settled to its new temperature, run hot water at it's hottest temperature into a measuring cup and take the water's temperature. I used an instant meat thermometer. It should not be over 120 degrees.

ID’s
Make a copy of their ID and insurance card and other pertinent information and put in their wallet but you keep the original. That way should they lose the wallet you have the original but if they got lost they have ID on them!

Incontinence/bathroom issues
Depends underwear greatly helps manage the incontinence problem.

For women with AD husbands, always check and make certain that they zipped up when exiting a bathroom.

Don't make a big to-do about changes and it's likely they won't notice, if you're lucky. I dreaded the day of Depends, but decided to say nothing and just do it. Once a day I took off her underwear, and after the bath put on the Depends. Never heard a word.

Buy 36x36 washable pads to go ON TOP OF the sheets in your bed. Depends leak and these prevent the "daily" changing and washing of sheets. Also buy washable "chair" pads -- again, for their favorite chair. And, be aware if you have a "micro-suede fabric couch", the cushions should be able to be zipped off & the cover WASHED! Just hang it to dry!

Get them into the idea of depends or 'pullups' as early as you can. The stigma of using diapers is in your head not theirs. Usually by the time they need them you have been cleaning and trying to avoid it too long! Use DOUBLES when you take them out.

From the first time you put Depends "underwear" on your husband (and yes, this is sex specific) see that he's got his "equipment" aimed DOWN into the underwear. Apparently some (many?) men wear it UP. This doesn't work with the absorbent part. If I hadn't made a big thing of it with him, we'd have had many months of messes!

Insurance
Begin using your Long Term Care insurance (if you have it) -- even if it's one day @ a time to get through a "waiting period" before the insurance kicks in. We had a 20 day waiting period & I used a care-giver one day a week for the "4-hour minimum" beginning in Nov of '07 -- now here in June, they pay and I can have a care-person for up to 7 hours a day, if I need it. And, our monthly premium is now "free" vs the money we were paying out for that. Check into your policy and begin using it.

Jane
See Jane's financial advice throughout various discussions at this website for steps needed to be taken to protect you and your assets.  

Labels Around the House
Some caregivers have found it helpful to label the washer, dryer, phone, toilet, tub, remote control, etc. Even when the memory isn't there, the ability to read can still exist. You can also label the drawers with socks, t -shirts, underwear, etc.

Legal papers
File separate income taxes. (Married filing separately.) You may be liable if your spouse makes mistakes. "We" were audited 3 years ago. Finally got out of it. They said we owed millions in taxes. Wrong! I filed separately this year despite my husband's anger about the issue.

One of the doctors wouldn't allow me to continue with treatment of her unless I had a signed POA to show him. Now how the heck is she supposed to get treatment in her condition if we don't have one (which I didn't)? So I told him I had left it at home, went home, got a POA form off my SIL's computer, and forged the whole dad gum thing. And I am not a bit sorry. Showed it to the doctor, he put a copy in her file, and that's that. At least they'll treat her now. I cannot even think of what the consequence would have been. So...As in times of war, you do what you have to, and the ends DOES justify the means.

Living in the past
If your LO is living in the past, and the past was a good one for them... allow them to enjoy these happy moments. I have made photo albums of different periods in his life. His childhood, his time in the military, his children, and our life together for example. We look at these albums daily, I just pick the one most relevant to the "time" he is in that particular day.

Lying

Going behind your LO ’s back to get something done is a fact of life and is here to stay. Do not be ashamed - rather you are being extremely kind to do it quietly.

Lie if you have to. In order to have the utilities put in my name, they told me my husband had to be dead. I said, "O.K., he died." Pronto, utilities in my name.

It’s ok to lie, fool, confuse them, if it makes your life easier. This was such a hard one for me - honesty is the cornerstone of any good relationship - but finally I got to the point I would tell him anything he wanted to hear, hide his medicine in ice cream, tell him we were going to visit friends when I was taking him to be evaluated for a nursing home.

Medic Alert
Get a medical alert band for the shoulder strap of the car so that in case of an accident and you are unconscious, the paramedics will have the information necessary to treat your spouse (including their name, address, medications and amounts, health insurance info and phone number, doctors' names and numbers, and relative to call). (see Travel discussion for where to order.) Also place a copy in wallet/purse for other times and one on the refrigerator door with a magnet.

Enroll in the medical alert and safe return program http://www.alz.org/we_can_help_medicalert_safereturn.asp

Medic alert wearers can choose from a variety of items...if the AD patient won't wear a bracelet, maybe they will wear a watch or a necklace that are tastefully designed to be the same thing but nice looking.

DH said he never wore a "bracelet" and didn't want to start now. We (DS and I) have told him he doesn't have a choice, and we may put in on when he is asleep. I've heard the clasp on the bracelet is very difficult to open, and it should be put on the dominant wrist. This makes it harder to get off and also makes it more noticeable. Both of these are good reasons not to use a necklace as he would prefer

Medicaid
Your spouse may be eligible for Medicare or Medical to pay for nursing home care. The "community spouse" can keep a considerable amount of assets and still qualify their Alzheimer's spouse. Check with Social Services on this.

Medications
Don't be afraid to get medication to help with depression and aggressive behavior.

Pharmacology is our friend ... both for us and for our ADLOs. There are times when our loved ones are suffering from the ravages of agitation and rage. There are meds that can help relieve their misery. When these symptoms first raise their ugly heads, talk with the neurologist right away.

AMEN! I would also add that if your doctor is not willing to help with medications, to keep seeking until you find one that will help you. We should all have the same tools every nursing home in the country has to keep out LO home.

Medicine dispensing
Medicine can often be "compounded", or put into a cream to be rubbed into the skin, or given as a liquid (so you can hide it in a drink).

Mood Swings
Mood swings will be constant you will never know when they will change.

Near violent mood swings can be smoothed out with an antidepressant like Paxil.

Oblivion
At some point they will not know the difference between hot and cold, the weather or their shower.

One Day at a Time
Don't borrow tomorrow's troubles today. Enjoy your dear spouse every day while you can. Cherish each moment of being able to communicate.

Out of Home Placement
When it comes to placement, nursing homes are NOT the only option! I found out this by happy accident. I was checking out the NH in the area (and feeling worse and worse at the conditions and the costs--no LTC) when someone gave me a booklet that listed the "Personal Care Homes" in the area. They may not be called that where you are, so let me explain. You know how some people do child-care out of their homes? There are senior-care places that do, too! And they are 24/7!

Questions – repeating and answering
Do not remind them that they have already asked that question and it has been answered.

If you have answered a question ("We'll leave in 20 minutes") and they ask again, rephrase the answer. "We'll leave after I talk to Jane"; "We'll go when the TV show is over." Sometimes a different answer finds a pathway into the brain.

Routine
A lot of AD patients don't want to change clothes or brush teeth at night. Although it seems easier to just give in and let them do what they want, it may affect their nights. If you are having a lot of problems with nighttime behavior, try going back to a routine. Taking a bath, brushing teeth, and getting into nightclothes is a routine they have had from early childhood, and can trigger the memories of how to behave at night...staying in bed, going to sleep.

Seat belts
You will need to put the seatbelt onto your spouse at some point and even help them get into the car because their perception of where the door handle is will change.

Tone of Voice
Your sensitivity to things that people say (or don't say) increases. Your feelings (whether you used to hide them or not) are right on the surface, and you have to be careful how you respond both with your expressions and the tone of your voice.

UTI (Urinary Tract Infection)
AD patients are more prone to UTI's. The problem is, they can't tell you they hurt or have symptoms, and the outward appearance is to have bizarre behavior. Anytime you have a major change in behavior, try testing for a UTI. My doctor does not like the reliability of the home tests, but there are labs that will come out to your home.

Weight loss/gain
If your spouse should "gain weight", don't waste a lot of money buying more than 3 outfits to compensate for the weight increase...buy only a few & hold onto the "old" ones in case they are able to fit into them later. My husband has gained 20 lbs in a year & gone from a 34 waist to a 38. I can only assume this is from no exercise, other than walking & running errands with me. He was always "fit" and this has been a real challenge. He doesn't 'binge' eat -- only meals. Doesn't even ask for food, but does eat what I put in front of him.

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