My LO is probably stage 5 with hints of 6. He doesn't want to go anywhere any more, would just rather stay home, no social contacts for either of us except for you here. I don't leave him alone so I'm starting to cancel going anywhere. We both retired when this disease started so now we can stay home but I'm bored after several days of it. I tried to start home health care coming out here but my LO likes to go up in the woods or walking around and he deosn't want anyone to go with him. They won't stay with him if they can't see him at all times, don't blame them on that one. I put a walkie-talkie in his pocket when I'm home and he can still use that. I can call him when I need to and maybe I'm wrong but I just feel I have to trust that he will be ok outside on our land. He has never wandered. He just walks around. Do you think I need to push him to be more social while he can still walk or is it better to let him just cancel all social contacts. He gets angry inside himself if we go out and then I'm uncomfortable so I think maybe it isn't good for me either... Don't know what to do. It's not fun when he is angry, makes me nervous and then going out isn't worth the effort.
Pushing him to be more sociable is only putting him in an uncomfortable position which makes him fearful, ill at ease and, thus, angry. Think of it this way--everyone is playing a game but you don't know the rules or whose turn it is--would you feel sociable or angry? He can't help any of it, he is unable to be sociable anymore. It is perfectly understandable he prefers to be alone. He doesn't have to try to answer questions that have no real answers, follow conversations he doesn't comprehend or be nice to people whose names he may not even remember.
As for walking in the woods--well, whatever makes him happy, but the safety issue is entirely up to you. I won't try to advise.
I wish I had some helpful advice, but I don't. My husband is also showing hints of stage 6. He doesn't wander and can be left home alone for brief periods, but prefers to tag along when I go out. Way too much togetherness for me.
I retired last year, and you're absolutely right - it is boring to become a virtual shut-in and to listen to the same "conversations" over and over. That's the way the disease is - there are 2 (or more) victims.
My DH hasn't declined as much as yours, but he is still uncomfortable in social situations. However, most people don't really recognize anything is wrong. But it is less stressful on him to limit social gatherings. Occasionally, I do invite a single elderly friend (male) over for dinner; or a couple and he enjoys that - if they don't stay too long! But they know and understand. I can't travel even to relatives anymore - just upsets him too, too much - and me too. I wouldn't push him, but you do need to try to get out some. Take care of yourself!
It probably does him good to get out and exercise but there is going to come a time when you will need to supervise his leaving alone i would think. it could happen at any time he doesnt remember how to get back home. i have first hand knowledge the AD uncle i lost this week, had been given a 3 wheeler to go off and check his land/cattle like yours, then he didnt come back one afternoon and they found him next day overturned in a ditch and unconcious. that was the end for him and NH and he just died last week after 5yrs in NH after the accident-. its a hard choice to allow them freedom or for security issue. if it were myself, i would insist that AFTER maybe the pm or so, he will have to stay with a sitter while YOU get out a couple times /week. if you have access to caregivers then use it! you are already relaying that you are resentful to having to cancel all social engagements and being with people yourself, so its imperative you make some demands for you to remain a good caregiver to him and dont burn out so soon-. he can do his roundabouts in the morning and you have a sitter who can stay with him inside for a few hrs...divvi
Beth, does the walkie-talkie have GPS, so you can find him if he does get lost? If not, you may want to check into getting a "chaperone phone" or something similar.
My husband is in the same situation as yours, Beth. Some neighbors have begun to take him out to lunch or a local museum once or twice a month, and he has enjoyed that. He takes a long walk every day and comes home on his own. Like Beth, I worry about him doing that, but haven't found any way to change it. There is no socializing. I can leave him alone for short periods of time but mostly he wants to tag along with me.
I know that at any time he could forget how to get home. Yet, he has been taking these long walks every day since May.
Sunshyne, what is a "chaperone phone"? Where would I get one? Would it be easy for him to use? He can use a walkie talkie now because he was a volunteer fireman for over 20 years and it seems second nature to him. It doesn't have GPS, do they make them with GPS? I have just felt it gives him such pleasure to walk around outside, quality of life vs. restricted freedom, what is important? Our land is fenced, only 8 acres, he can hear me yell almost wherever he is. I realize he could go the wrong way and get lost, maybe I've got my head in the sand in denial. I hate to battle with him but guess it may be time to battle over a sitter (it will be an emotional battle) so I can get out. Thank-you all for your responses, I'm glad to have someone to ask, others don't understand even though they mean well.
Our son in Missouri wants us to come back there for the six weeks of Lent--Feb 25-April 13. I'd love to go. I'm not sure about DH. Some days he's all set to go. Other days he doesn't want to get out of his chair. I've already got someone to keep my kitty for me. (Wonder if he'll remember me when I get home.:).
He is stage 5+. good days and bad days. I'm getting bored as well. Gues that's part of the territory.
Has anyone out there had any experience with a 6 week trip? I'm thinking of flying. There'd be one stop in Denver. What do you guys think of the train or a bus? The train could be fun. Our son would have to drive 150 miles to pick us up. Like I said. No concrete plans yet. Just thinkng. I'd sure like to go and I'd never go without him.
Beth, most all of us at some point had to pick our battle about having someone come in to sit while we get out...its never easy no matter how far or early they are with this disease. once you get it done and have some free time you will see what we are harping about:) divvi
Mawzy, the bathroom is the most trying. Both on the plane and in the terminal. Other than that you can make arrangements before you go to have assistance to gates, etc. and this eliminates walking, unless your husband is ok with walking. Watch the BR carefully because they have 2 exits in the terminals. I don't know if you can get assistance at the airport to have a man take him to the bathroom or not??? Then when you go make it a fast trip. Your trip sounds lovely but I don't know how "I myself" would be happy with 6 weeks. Never had the opportunity to try it but, it would be a little long for me.
Any of you with walking spouses I would highly recommend the bracelets the Policemen have available for dementia patients. They even change the batteries for you and they are waterproof. I seen them demostrated and they can find someone pretty quickly. If I were able to travel with my husband I would insist he has to wear one - Doctors Orders. Losing him in a airport would be tragic. Even though he barely walks he can get out of sight unbelieveably fast. They are inexpensive. My husband can't dial or answer a phone or walky talky.
My husband has spinal stenosis and can just walk a few feet until sitting down. I can't leave him alone very long because I can't trust him. Today I left him in the car at a house we are trying to rent, while I was showing the house and it wasn't long until he got out of the car and came to the house.
I started taking my husband in the car most every morning, to eat at McDonalds. He was not overly enthused at first but it didn't take him long to start looking forward to the trip. That gets us out to a not very busy place and he doesn't have to socialize but he does see other people and I see other people and I have been able to run into the library a few minutes, or to pick up a few things at Wallmart, etc. Not sure how long I can do that. I know Mawzy doesn't drive so that would not work for her.
Beth35---Your land is fenced and he will carry and use a walkie-talkie, so you do have some control over his range.
Don't force the socialization, but do play into his desire not to socialize. He can do his walks in the mornings on 2 of the days and stay with a "helper" at the house in the afternoon those 2 days so you can "do the grocery shopping", "run errands", or "whatever you invent to do." Don't use all the time for household stuff, and expand the time for you as he gets used to the "helper" being around.
I'm working on getting my hubby used to being with others, so when I have to go do things he handles it better. He didn't want to go to the Orthotics place when I needed a brace repair, but he wasn't happy with a stranger being here with him either. I am stressing to him these people are helpers---NOT babysitters.
At the same time he doesn't want strangers to be with him, he will invite total strangers into the house because they look familiar---door-to-door sales people. You just never know what new mischief our LO's can come up with next.
Personal GPS systems are a rapidly growing business. You can probably find more than these. Google for "GPS locator" or "GPS tracker" or "child GPS", etc.
Wherifone has a phone designed for seniors, and another for children (which look suspiciously similar): http://www.wherify.com
Verizon offers the Chaperone phone system. If your ADLO leaves the house, your phone would signal you. You can pull up a map on your computer that will show where he is. One of the caregivers on "the other site" swears by this system. http://products.vzw.com/index.aspx?id=fnd_toolsApps_getChaperone
Sprint offers the Family Locator system. http://sfl.sprintpcs.com/finder-sprint-family/moreInfo.htm
Another idea is just to have him carry a GPS locator, in his pocket for example, and continue to use the walkie-talkie.
There are a lot of different styles. The smallest I've seen is offered by Global Tracking Group. It's about the size of a set of car keys. http://www.globaltrackinggroup.com/?gclid=CL_Nq_PR-ZUCFRsRagodfh9OEQ
Care Trak has a wrist transmitter that can be used to locate the person wearing it. There are also devices that sound an alarm if the person walks beyond a certain distance from the monitor, or crosses a boundary. http://www.caretrak.com
Care Electronics offers a similar product, the WanderCARE 100T: http://www.careelectronics.com/
Track in a Pack offers several different trackers: http://www.trackinapack.com/
These people are developing a GPS watch specifically for AD patients and children with autism, but it isn't available yet -- "winter 2008" and I've heard it may be fairly pricey -- $500 for the watch and $200/month for the monitoring services: http://www.peopletrackusa.com/TracPRO_details_alzheimer_monitoring.htm
I am one who swears by our Verizon Chaperone Phones!!!! We bought them the day he was diagnosed with AD, and it is my safety net. I have his phone programmed with my number and my daughter's number, so he only had to learn to flip it open and press either "2" or "3" and we would answer. The tracking lets us know if he goes more than a block from the house. It rings us and tells us. Then we call up the map which will show us precisely where he is. They are very easy to work and they are definitely worth the price! Especially for my peace of mind!
He has known from day one that it is his lifeline, and the only time it leaves his body is in the bath and in bed. And once a week, I have him call me (in front of me) to make certain he still can call us. I know that I can find him at all times even if he is at home.
Twice he failed to answer his phone - once he was sleeping too soundly, and the other, he was concentrating on his model so much he didn't want to stop. Both times I panicked and called the neighbor, who went across the street to make certain he hadn't fallen, or had a stroke! (The "listen to a lecture" button is broken as well.) <grin>
On the trip - Having flown with my husband, and him getting lost in the airport, and having driven with him ("Are we there yet?""Where are we going?" constantly being asked) - I vote for flight. It's quicker and doesn't give him as much time to be disoriented. The airport facilities now have "family" restrooms, so you can both go in together. Just make certain that he isn't tired or in pain when flying, and you should be okay. With relatives meeting your plane, you'll have help with the luggage at the other end. You might want to consider mailing everything that is not carryon, so as to lessen your hassle with him at the airport. It's just a thought.
As to socialization, my husband had a few close friends, but was and is an introvert, and yet now, when we go out, he looks at, smiles and waves at small children, and if they are close enough, high 5's them! We have our best friends (who now live in another state) come down for a weekend once a month (dear, sweet people) and watch DVDs with him and ask yes or no questions, and we go out to eat. However, he listens to conversations, yet can't and doesn't try to take part. I wouldn't try to push him into socializing, but I might invite my best friend over and see if he tries to join in your conversation with her; or have a couple of men from your neighborhood or church come by and see if he is interested. If not, then I'd leave him be, and just have my own friends over and put in a movie in the bedroom for him. Some people go through periods that they would really rather be alone.
Only thing to consider re: air travel: will your LO be OK if the flights are delayed many hours or even canceled outright? I've had flights canceled where I could not get a replacement flight for two days.
After a successful trip to visit daughter and grandchildren in Texas, we were on our way home. After changing planes in Chicago, we were in the air when DH asked, where is my coat. I guess he left it in the airport, since I know he had it there. I was thinking we were doing so well. I guess I had a taste of reality. Now, I wonder about attending the niece's wedding in NJ in December and the cruise in January.
Maryd, anyone could leave a coat at the airport so don't let that stop you. I imagine you can recover it through their lost and found. Be thankful it wasn't a laptop computer.
Heck, maryd, if he just left a coat behind, that was a GREAT trip!!! How many perfectly healthy people leave things in airports and hotel rooms? Plus, your husband was the one who remembered it, and not all that long after it got left behind.