I see a lot of people who are caregiving the early stages, and I want them to get the benefit of the things we learned through trial and error. If you have something you know you should have been told way earlier than you were, put it here!
#1 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). My DW started to fight me on taking pills two years ago, and I began to dread every morning and night. Why didn't a doctor tell me about the alternatives?
#2 You can get Hospice help way before you think you can. Look into it!
#3 There are doctors AND dentists who will come to your home to do checkups and give care! And they take insurance and Medicare! NO ONE told me this until it was too late.
#4. There will be personality changes that alter your relationship forever - I wish I had known - it wouldn't change that it happened, but maybe knowing would have softened the blow a bit. It was like being hit in the face with a brick and stabbed in the heart.
#5. Do not remind them that they have already asked that question and it has been answered. Do not try to reason with them. The reason switch is busted and can not be repaired.
#6. 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.
#7. Read the Frank Broyles book on Alzheimer's. (It is free through the Alz. Assn.) 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.
trisinger Yes great idea. Joan you are so right docs need to tell us up front. #8. Mood swings will be constant you will never know when they will change. #9. Don't try to reason with an enraged person, walk away.
10. 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 wil forget they are suppose to use hot water.
11. 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.
12. Just like a toddler, there are "stages." I am not talking the stages 1-7 on the alz 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!
13. 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.
14. 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.
15. 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.
Starling, In a posting some time ago, someone mentioned the "old fashion" child proof rubber devices that were placed over the door knob. Same principle as the child proof medicine containers, where you have to apply a certain amount of pressure to keep them from just spinning. Seems the AD brain can't overcome the challange. I'll guess you can get them at Lowes or Home Depot. Good Luck. DickS
Starling, I 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. My wife M has been unable to figure out how it works, even when I have demonstrated it to her.
The duct tape will peel off door facing paint if placed on wood, so I just use it only on the metal fridge door.
20. 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.
21. Some caregivers have found it helpful to label the washer, dryer, phone, toliet, tub, remote control, etc. so that even when the memory isn't there, the ability to read still exists.
I find it odd but its true. They forget how to use things or where things are kept, but they can READ. I have labelled the drawers with socks, t -shirts, underwear etc.Before I caught on everything was put into drawers in a hodge podge and he could never find anything.
22. Sooner or later, whether you want to or not, you will have to take over and be in charge of EVERYTHING.
23. Your spouse will not realize how much you have taken over.
24. 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.
24. Your spouse will no longer contribute or offer feedback on any decisions you make.
25. 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.
26. If you can find a hobby that they can do sitting down that takes concentration (jugsaw puzzles, model kits, etc.), having them do these not only keeps them occupied, but helps with mental exercises.
27. For women with AD husbands, always check and make certain that they zipped up when exiting a bathroom.
28. 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. (I also have one on our refrigerator door with a magnet.)
I don't know if this has been mentioned but loss of sensation of hunger or thirst. My husband will insist he has had lunch which he usually gets himself and he doesn't drink anything all day unless I remind him to do so. You are right, Mary, the desire for sweets has increased and he will always have something sweet with lunch and dessert at a restaurant which he never did before. The zipping up business is a problem and he resents me telling him when he forgets. He doesn't see the need for it when at home.
Dh would not eat if not prompted. If I happen to be out at lunch time and leave lunch on the table he doesn't eat it. He will get a beer but would not look to drink anything else.Another reason that I can't leave him alone for long.
29. AD patients are more prone to UTI's. The problem is, they can't tell you they hurt or have a symptoms, and the outward appearance is to have bizzarre behavior. Anytime you have a major change in behavior, try testing for a UTI. My doctor does not like the reliablility of the home tests, but there are labs that will come out to your home.
30. 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.
31. 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 pull-over shirts before he could object or not learn how to deal with them; now they're accepted.
32. 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.
33. 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 day I took off her underwear, and after the bath put on the Depends. Never heard a word.
34. 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 fav chair. And, be aware if you have a "microsuade fabric couch", the cushions should be able to be zipped off & the cover WASHED! Just hang it to dry!
35. Don't be afraid to get medication to help with depression and aggressive behavior.
36. 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.
37. Don't assume if you say "go get into the car" that they will. They may travel down the street before you know it!
38. If your spouse should "gain weight", don't waste alot 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.
39. 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.
40. 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 condidtions and the costs--no LTC) when someone gave me a booklet that listed the "Personal Care Homes" in the area.
Now, they may not be called that where you are, so let me explain. You know how some some people do child care out of their homes? There are senior care places that do, too! And they are 24/7!
I found my LO a home that is 16 people, all living together. The caregivers live with them in shifts, and they are wonderful. It's a regular home that just happens to have 8 bedrooms, you'd never know what it was if you didn't know. If you want the personal touch, and you don't want them to feel they are living in a 'facility', you may want to give these a look over. OF COURSE...do your research. ANY care facility type has the good ones and the bad ones, children or seniors. Ask around, drop in, the same thing you would do for a NH decision. Our care home is spoken of very highly in the community, and I have no reason to doubt it. And it's $2400/month! Beat that at a NH, I dare you!
trisinger, can you name the one you are using? . we are in central tx area too -that sounds like something i may want to checkinto when time is right..thanks, Divvi
41 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.
I attend a caregiver support group now and one thing she has suggested that I don;t see here is to 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!
Good idea!! My DH lost his wallet (in the house!!) and I didn't have his prescription card. We finally found it behind the printer a week later. I took out important cards, but I could make copies of others so I have them.
42. Look into disability and stuff right away. To get disability, you have to have stopped working fairly soon before the Dx. The whole point is that it keeps you from being able to work.
43. 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.
44. Your LO is the equivilant 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!
I was told by someone who went to classes on AD regarding the door locks sometimes if you move the chain lock up or down they dont see it...Also I took hubby to his eye doc 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..I thought how smart. Like you said earlier in this postings what to know before to late.....With us the wills and power of attorney was very important to us...
I did the eye exam in January knowing it might be the last one possible. And I did a dentist visit not too long ago for the same reason. In both cases he was able to cooperate. There will come a point when he won't be able to do that.
47. 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.
48. See Jane's financial advice throughout various discussions at this website for other steps needed to be taken to protect you and your assets.
49. 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.
51. If bills are in his name, start getting them turned over to your name while your spouse can still sign anything or talk to them if necessary. It is very difficult when the phone or cable goes out and they want to talk to him or they won't give you information because you are not on the account.
52. 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.
OK, absolutely no one but you all (my 300 closest internet friends) knows I did this. 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)? Is that just the end of it? We had tried to get her to do this back in Stage 2, but she was in the paranoid stage, so she wouldn't sign it.
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.....#53. As in times of war, you do what you have to, and the ends DOES justify the means.
Good going trisinger! I am a terrible at lies, but when your back is up against the wall, what else can you do. Hey, I reread my #52, and I even got a chuckle out of it!
#54 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 effected their thought process and they can not rationalize any more. Learn this early, it will prevent many bumps from banging your head against the wall *wink* Distraction is key
#55 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.
#56 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
#57 I am doing this today. 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 (sonB) instead of Dr. Smith (doctor) and make all the names easy to understand by anyone that they are family members or doctors, etc.
#58 enroll in the medical alert and safe return program http://www.alz.org/we_can_help_medicalert_safereturn.asp
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 braclet that informs I am the caregiver of Lynn and that he has AD, and he has one as well...but wont wear it... though the card is in his wallet. The local police also have this information on file ... just in case.
#59. 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.
OK, I have the Safe Return application almost filled out, still sitting here. Have to mail it in..... DH said he was never 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 noticable. Both of these are good reasons not to go with a necklace as he would prefer.
60. 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.