61. 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 neuro right away. (Courtesy of Mary and PatB)
61/a. AMEN! I would also add 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 coutry has to keep out LO home.
And 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.
And 62. Your spouse may be eligible for Medicare or Medical to pay for nursing home care. The "community spouse" can keep a considerable amount of assetts and still qualify their Alzheimer's spouse. Check with Social Services on this.
65. 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!! :)
Get them into the idea of depends or 'pullups' early as you can. the stigma of using diapersis in your head not theres usually by the time they need them you have been cleaning and trying to avoid it too long! divvi ps and use DOUBLES when you take them out.
66. 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.
69. 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.
70. 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.
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.
71. 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.
As an addendum to #72, 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.
#73 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!
Now that the Alzheimer's nightmare is over, I am looking back at the last 7 years. I know that I did the best I could, given the absence of help with health care and human services in this country, but I still have regrets. Maybe someone on the beginning miles of this journey can learn from them, or maybe it's just something everyone has to learn on their own - I don't know.
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.
beenthere-you hit the nail on the head. Once we stop controlling the situation things do get easier. There is nothing we can do at this point to change anything except the way we react to it.
Beenthere- IMy DH in the early stages and I must tell you that I have only known this website for a week but your message is such an important one. This website has made it clear to me that I do have to move on to the next step, I so want him to be normal but everyone here has made me realize that I must live one day at a time and enjoy life with him while he still has a life. I am fortunate to have the means to keep him home and know I will never have to have him in a nursing home but your words are truly profound. Thank you!
Sometimes I think I should be trying every possible cure, diet, exercise, etc. to try and help my DH with this disease. But since there is no "answer" I think we save ourselves and our loved ones a lot of stress if we just do as Beenthere says...The only solution is acceptance". I think I'm starting to learn this.
beenthere, Have no regrets. It only causes anguish. You did the best you could under the circumstances with the knowledge that you had at the time. I have forgiven myself. Had I not found this site and all this information, I would probably be making the same mistakes, groping in the dark. You didn't have such a site back then. Be at peace. Sending you love & light.
I agree pharmacology is a good thing when we need them to help get thru the tangents/aggressiion/mood swings, but i would like to have known earlier that sometimes 'Less is more' with regards to meds when there is alot of confusion and loss of functions in our loved one. sometimes the losses are actually caused by meds they are taking- i found out the hard way, after many yrs of giving everything the drs rx'd husband was much more lucid with only the life sustaining ones after mid stages -divvi
Like FLgirl, I too originally felt "try everything possible" and help him deal with the disease...as time passes and things decline more & more, i also agree with "acceptance"...of course, i also have to 'forgive myself' many many times as i am human and humans get tired, frustrated, weary, sad, needy...as care-givers, even with a little relief, i think we long for "normalcy" in our lives and it just won't be there down this long road of Alz...forgiveness is a must...and prayer for strength to be the best we can so that they get the best...quite a balancing act ~ perhaps they should create a new "Olympic" event since we are doing that balancing act thing quite often. :)
The one bit of advise I learned early on was: Remember, YOU set the tone of the day. If you are smiling, easy going, not easily upset - then that is how their day will be. If you get up on the wrong side of the bed, kick the dog, etc - you will quickly learn they are going to be upset also - for no appearant reason. Your loved one will pick up everything from you - you are the one they see, the one they hear, the one that talks to them. Difficult as it can be - always try, when you are dealing with them, to be cool, calm, and collected - always try to approach your LO with a smile and a gentle word. It works.
Even today with my DH living in a NH - If I am having a bad day he quickly picks up on something being wrong, and often I can not approach him - he will strike out and push me away. If I go to him with a spring in my step, and a smile on my face - he returns the same. Speak to them in a quiet manner - most do not like noise or yellling. Someone laughing loudly can cause them to become easily upset.
73. If your LO does most of the driving when the two of you are in the car, or even worse all of it, start doing more of the driving early on. Not only won't you need to re-learn how to drive, but the transition to you doing all of the driving will be easier. This is something I wish I had done, but learned about too late.
74. Start putting together a support network early. Find the phone numbers for the agencies you are going to need, and even call some of them to find out what kind of support they will be able to give you when the time comes. When people start offering to help, start a list. When you begin to realize that you need help for specific things, start a list. When the time comes you can start putting the lists together. You aren't going to be able to do it all alone, so you might as well start thinking about who can help and what they can do for you early.
Like most of our LO’s my wife is forever leaving drawers and doors open and she never remembers to turn the lights off. The other day I was thumbing through a brochure from a local hardware store and I saw an ad for motion sensor light switches. I bought one and installed it in the master bathroom. If you are not familiar with them, they are activated with motion and stay on for a period of time that can be adjusted from 15 seconds to 15 minutes. WOW! What a great device! No more do I have to follow after her and turn the lights off. I plan on buying several more for strategic locations DickS
Do they make any gadget for keeping things on? He turns everything off. I can have 1 lamp on in the living room, when I'm in there. He'll come in and turn off my alarm clock in the early a.m. Also, he closes the drapes at 4 p.m.--it isn't even dusk yet. He can keep his room lights off, and draps shut--fine by me. But on braces and crutches, I need some light to see my way around the house at night.
Question about the light switch. Does anyone know if it is better to put one on my 4 tube flor. light in the laundry room where we are in and out multiple times a day or leave it on all day? Maybe a portable screw bulb in the receptical would be better.
Warning about the light switch ... if you hold still -- reading a book, watching TV, working on a computer, doing paperwork -- the light can go off without warning. Make sure you don't use the sensor in a location where you (or your ADLO) would be left in darkness if they go off. You have to be in exactly the right place for motion on your part to get them to go back on again.
We've had these installed in two places where I worked, and I simply loathed them. The first, I had no control. The second was in the building where my company subleased space, and I insisted that they take the sensors right back out again. I could stand right in front of the sensor and wave my arms and not get any response.
One place they work really well is in bathrooms in office buildings. Or at least the ones in the buildings I worked in in California were set up beautifully. I prefer motion sensor lights to having the lights off in those places because of safety features.
I think it also depends on how they are set up. How long with no motion before they go off? Where is the sensor?
I have a motion sensor "night light" in our laundry room which is also our mud room entrance from the garage. I wanted something that would give us enough light to get through the room. When that light dies (it is now 4 years old and shows no sign of dying) I want something brighter and might even go and look for something better soon.
I have the laundry/mud room off the garage too and I have a 4' 4 light flor. in there. I also have a night light. I need something with more light but in between what I have.
Imor - no prob using motion sensor on flourescent lites. ON/off 4 times a day is no big deal. If every 1/2 hour, I wouldn't see the use. Anyway, both the light and the motion sensor can handle it. If someone were left in a room with a motion sensor that automatically turned off due to lack of motion, more than likely that person would make some sort of motion out of fear, survival or ? and trip the sensor to turn the light back on. If not, you bought a very cheap motion sensor. What is safety worth? I definately experience the lights being left on everywhere. However, the one that gets me more is leaving the water running......usually hot water. I'll have to check in to the hand motion sensors to turn the water on/off. Could save me a bundle and prevent the next flood in our house. Thenneck
thenneck - I can relate to the water running. Bathroom has been flooded twice. Last time I removed the stopper so it would be difficult to do now. They have the motion sensor in store bathrooms so I imagine they are for sale. There is some kind of a straw set-up some of the ladies here use.
Thenneck, I can't speak to the expense of the motion sensors installed in either of the two facilities where I worked, since I didn't buy them. I CAN speak to whether motion would get them turned back on. In one, I had a 10x10 office. I had to get up out of my chair and walk over to the sensor to get the lights to come back on. Note that it did NOT take this much motion to KEEP the lights on ... it's when I kept too still reading etc and the lights went off that I had to get up to get them relit. Since I had windows, this was annoying but not unsafe.
In the other, I managed to block the installation of the sensors inside my company's space, but they were already installed in the general bathrooms by the time I discovered what was going on. Again, minimal motion kept the lights lit. But if someone was sitting in a stall, where the ability to sense motion was blocked, if the lights went out, I could walk to the sensor and, standing two or three feet away, wave my arms and the blooming lights wouldn't come back on. There was a small light just inside the door that was usually kept on constantly. But if somebody turned that off and the sensor turned off the rest of the lights, it was PITCH black in there -- no windows.
So be very careful what you buy and where you put it.
77. If you notice your spouse is eating certain items on his/her plate, but leaving the main course, ask if he/she would like for you to cut it up for him/her. It could be that for the moment, he/she has forgotten how to eat that item. It may be temporary, or it could be a permanent loss. Some foods seem to be remembered longer than others. I would not advise cutting up anything/everything without asking, unless your loved one requests it or has passed the stage of wanting to take care of the matter on their own. Pride is a precious thing, when they remember it.
To add to Mary's: My husband is doing fine cutting up meats, but has been having a terrible time trying to eat pasta like spaghetti. If I serve it at home, I cut it up into small pieces before I serve it. So far, he's been happy to have me cut it up for him in restaurants, if I just say, very matter-of-fact, "here, let me help".
Do your husbands have to get every teeny tiny crumb off their plate? It takes him twice as long as it takes us to eat. I've developed a LOT of patience in this area! Great idea Imohr! We use bowtie pasta and it's easy to fork.
lmohr, thanks, and when I'm doing home-cooked pasta, I'll use that tip. I am, however, known to rely on frozen dinners from time to time. So if you could please get Marie Callender to use shell pasta in their chicken fettucini with broccoli ...