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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".
So here we go – Alphabetically, of course:
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.
AD proof the house
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.
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.
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.
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
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
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!
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
Does everyone have ICE in their cell phones? Here's an article:
Child like Stages of AD – developmental
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!
Decision making alone
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.
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!
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.
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.
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.
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!
Labels Around the House
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
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.
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
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.
Near violent mood swings can be smoothed out with an antidepressant like Paxil.
One Day at a Time
Out of Home Placement
Questions – repeating and answering
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.
Tone of Voice
UTI (Urinary Tract Infection)
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