I was reading the message about hunting started by "Mary in Montana" and it got me thinking that it would be interesting to hear what we do together with our loved ones . Kathryn and I have always enjoyed going to the movies, out to eat with and without friends, taking day trips and attending family night dinners at my Lodge and we are still able to do all of these things at this time. I really like to play golf (I find it relaxing) and while Kathryn never had a desire to play golf she does enjoy plants and flowers and things like that. As it turns out golf courses are normally well cared for and are great places to just walk if you like plants and all. So a few months ago I asked Kathryn if she would go with me and just ride along as I played golf. She did and now she loves to go with me when I do play. Some golf courses do have a small charge for the rider but most wave it. Now when ever I play I always ask if she would like to go and she almost always goes with me.
I would like to hear what others do with their loved ones.
your still a lucky man,we go out to eat an thats about it,I can't even go to my man cave an play pool or slot machine for fear that she's getting into trouble upstairs,give her a minute whilst I'm not about an she can get into the damdest things,she gets busy on the phone or hides things,outside she likes to pull weeds but has been known to pull a whole bed of flowering ground covers out,I caught her with her hands full an she said I didn't do that,like a nut house around here an I'm getting just as wacky trying to take care of her
My husband likes to go out everyday. He goes to daycare three days a week and the days he is home I always try to do something. Today we went to the Museum of Science and Industry in Chicago for a couple of hours. (It's free this week; just have to pay for parking). He enjoys going to the movies, the zoo, our local conservatory and eating out. We live near some forest preserves with nature centers, so on nice days we will go for short walks on the trails. If nothing else, we make our daily trek to walk around the mall. The only thing I'm noticing lately is that after we have been home a few hours he doesn't always remember that we went anywhere and will ask when we are going out.
We still bicycle although lately this has been getting harder because he will no longer always go in the right direction. Coming home from a show at a sports hall the other day he suddenly said, "I'm going the other way, I want to go home" and simply turned around. Of course I had to follow him and had a dilly of a time getting him home; he kept going the wrong way at every road corner. That was Sunday, since then we have only taken small rides. Tomorrow he's home from day care and I hope we can cycle to his favorite restaurant for an "apple bomb." But if I have so much trouble getting him home again, that will have to be the end of it I'm afraid. Too bad, because the cycling is so good for both of us.
We also have a "Rotterdam pass" which functions like an entertainment book, with lots of coupons for things to do. So we will be going to the zoo, on a boat ride though the harbor, up to the top of the Euromast -- things we do every year and I think we can still do them this year. Also good for free entry to all the museums but unfortunately dh hates them now and won't stay more than 15 minutes when I can even get him in. It gives a discount on movies which is a good thing because we go a lot.
My DH is still in stage 4, so we are able to do most of the things we always done. He can still go places without me if he gets a friend to drive him or I drop him off. We go to church, movies, and out to eat. We also go to meetings, plays and lectures, although I'm not always sure how much he understands, and he doesn't remember much afterwards. He likes to go to the zoo and to nature preserves. Sometimes I do that with him and sometimes he goes with friends. Some things are getting more difficult, though. He's supposed to go to a meeting tomorrow night and report on a video he brought home from the last meeting of the group. He watched the video alone. Today he's asked me four times where the video came from. He doesn't remember where he got it or that he has watched it.
Sid has other physical health problems that interfere with his ability to walk for more than 10 minutes without being in pain. But, together, we are still able to enjoy movies, live theater, outdoor concerts, get-together at Alzheimer friends' houses, and restaurant dinners.
It's pretty much the same as briegull. He doesn't want to go anywhere. Maybe I'll be able to get him to go out more now that the weather is better, but he mostly wants to stay home, sitting in his room or in our backyard and garden. We used to go to movies, the theater, weekend trips, several vacations a year, now we stay home. I go out with my friends or my sister occasionally, but that's it.
As with Briegull, we don't do much. We do get to church, preceeded by the Adult Forum, but my wife doesn't get anything out of it. At the moment we are still going together to Rotary, but, again, she gets nothing out of it. Since she has been accepted for Hospice I am looking into getting a volunteer to be with her while I go to Rotary alone. That way I keep in contact with the "real" world for after this trip is over.
Deb 112958, those are great things to try. I hadn’t considered the zoo or museums. I will try taking Kathryn to both. I think she will enjoy them.
JeanetteB, Kathryn can no longer ride a bike but I am looking for a four wheel bike that carries either 2 or 4 so we can ride it together.
Ol Don, it sounds like Kathryn and your wife are at about the same stage for the most part. Kathryn doesn’t hide things, she put them in safe places and just can’t remember where the safe place is (boy are they safe). If I ask her if she did something the answer is always she didn’t do it (she doesn’t remember). She does some pretty odd things too.
I have found at least in my and Kathryn’s case we can do almost anything where we can either hold hands are she can sit while doing it. Go for walks, the movies, shopping, out to dinner. I think the zoo and museums will work also. I know the all our loved ones are not the same even if they are at the same stage. But it is worth a try. In Kathryn’s case she is at her happiness just being with me so I do my best to include her in everything I can. However, they don’t all work out well. I just do my best to remember and accept her limitations as if they are also mine when we are doing things together.
I do feel like I am still lucky, there are days when I don’t feel so lucky and last night was one. Kathryn and I were in bed and she looked over at me and asked me what my name was and do we have sex. I told her that my name was Jim and yes we do have sex (even I can’t remember the last time, LOL). She say ok and rolled over and went back to sleep. This was the second time she has forgotten me and to tell you the truth it scares the you know what out of me. Good news is this morning she knew who I was.
We all know we are not going to win the war, and, sometimes it is hard to keep fighting the battles when you know the war is already lost, but we need to keep fighting the battles. Just never give up. It’s worth fighting for.
My husband is at stage 6; we still do most of the activities we always did socially. We go out to dinner with friends or by ourselves; go to theater, symphony and movies; go food/clothes shopping and run errands; visit my Dad at his ALF; go to the hairstylist and get manicures; go to museums and on bus trips. Last fall we took a cruise; I'm trying to decide what to do for a vacation this year. The only activity we have stopped is going to the gym together--he no longer wants to go.
My husband is like Marsh's wife. I can take him out with me, but he doesn't know what is going on around him any more. He can eat (but needs help feeding himself) and walk (if I hold his hand for support because he stumbles and won't use a walker) and sometimes we have to help him "sit down" - due to lack of visual perception and not remembering how. Meals out at four usual restaurants and the movies are all we can do now. I do take him to our salon where Barron washes, cuts and styles his hair (even when he's asleep in the chair!) once a month.
He is past the place where he gets any pleasures out of life or that he has any emotions at all.
In the last month I have stopped taking my dh places with me-he is stage 6- a l5 minute trip to the store feels like forever with him along. My heart breaks for him now that golfing season is here, but we tried last year and he no longer understands what he is supposed to do. We have had people stop and he know longer really knows anyone. He does socialize really well at the daycare center however. He no longer remembers my name but has taken to calling me "mama". My granddaughter calls me that and somehow he is able to remember that. I will take mama as I know someday ....
There is very little I can co with my husband. He is in a nursing home and I go most days at dinner time so that I can feed him. His appetite is good eating is one of the things that he still seems to enjoy. Other than that I put on some of his favorite music and put lotion on his hands and feet. He makes little humming sounds as I do this and I assume he is enjoying the music or the massage, hopefully both and there is no other way he can communicate.
This is a very hard one. My husband also has Parkinson's so he has tremors that prevent him from anything that involves his right side, which of course he is right handed, so it is very disabling. He also has alot of difficulty with speech and language. We still walk and ride bike on a trail. We moved 6 mo ago and have some yard things to keep us busy, but it usually ends up being "my" project instead of "our" project. He used to be so social and now prefers to stay home and not interact with others at all. Now I still am able to leave him alone for an hour or two, but that is about the only time I can get out. I see that as becoming more of an issue, as I really need a longer break at times. He still doesn't want a "babysitter" but we are heading in that direction.
We used to love drives in the country with a lunch stop along the way. Always had a cottage and loved fishing. These days DW sits on the back deck at the farm smoking and talking to her imaginary friends. I used to run an excavating business but can't leave her alone, so I moved all my tools to our house garage and work on all my equipmet while she watches, as long as I call her name once and a while she seems OK. I have the best maintained good looking fleet that never does any work. I do some small work at times and have to drag her along, she sits in the Jeep and watches ( she can handle an hour or so) then I will take her for lunch. My brother drives the Dump truck when I get a job.
Reading along here makes me realize I should be doing so much MORE probably. DH is always willing to GO anywhere and attempt to DO anything. He has gradually lost the ability to be a 'self starter'..but if asked to do anything, he will try his best. Whether its done right or not doesn't matter to me. It seems tho, that there is no RESIDUAL value in any of the doings. and the point of that..is once the activity is over..he's antsy again.. Once we've been out to lunch and come home.. he's antsy again. Once he's watered the garden, he comes in and I'm thinking of something to ask him to do NEXT. However, the doings usually work out just fine.. With constant supervision, he usually manages just fine and will sit and watch grandson's baseball games..even tho he may not know whats going on. He's out 'there' and thats all that counts. Now though, he needs supervision in the public bathrooms.(can't find the necessities).. BUT yesterday we went to SAMS to get new tires for my car and had to wait 2 hrs. For a long time we walked around, DH pushing the basket and I 'pulled' the basket, guiding us along. Then he sat down to wait, next to another fellow and they began to talk about the 'old days'. etc. Eventually another fellow joined and I could see that DH was happy as a lark. A very very good thing to see.
I think, too, I should be doing more with DH or at least trying to figure out what he might like to do and be able to do. There are 2 things that hold me up, 1, he is always so short of breath ( today we are going for a pulmonary function test) and I hope there can be some resolution so he will have more energy, and 2 there is so much for ME to do here now he does not show the interest or ability to do the things he used to. I have asked him if he would be interested in joining a group where he would meet more people and be able to talk about things but he said no he would not like that. This coming from a man who was always so social and before the evening was out would have met everyone and made new friends. It puts me in the crosshairs.
Mimi, they get to the point that they don't KNOW what they want to do. And what they might THINK they want to do, they will lose interest quickly. Playing card games on the computer was something my husband did, and it kept his mind active for many months; I got him a model ship to put together, and he worked on it and seemed to enjoy it, so I now have three completed sailing ships! (The fourth one wasn't put together well and he would take it apart and re-glue it until it was hopeless, so one night it disappeared and hand held puzzles appeared the next day.)
They need something to do with their hands. It is a process of buying and seeing what works and what doesn't, you can either return or donate to the Church or Goodwill or a hospital. Think small things that DON'T required too much thought, because it will just frustrate them.
My sweet Sharon used to love to do all sorts of things. She was known around the rural area where we live as "The blonde who runs" ... she ran 5 miles a day for years. Over these last 3 years her mental and physical condition have both declined so much that she is essentially incapable of doing anything at all. She does come to dinner with my daughter and I once a week at a local family restaurant... though I have to feed her and order her meal. She is beyond responding to even simple questions from strangers. The most interaction we have is when I have to get her ready for bed or up in the morning. She seems to like it when I read to her and she still laughs when I act the fool. I know she is listening but she is not at all interactive anymore.
When I started this it was in hope of getting new ideas of thing we might be able to do with our Loved Ones and I wasn’t disappointed. I have gotten new ideas to try and I am sure some of them will be things our Loved Ones can do.
However, I learned something else along the way. I learned that all of our Loved Ones have limitations and that we need to know what their limitations are and understand that their limitations are also our limitations when we are together.
Our Loved Ones limitations can be very different from another’s, even if they are in the same stage as another, and we may only be able to hold the hand of one Loved One that is in stage five, while another Loved One in stage five may be able to ride bike. The limitations and abilities are greatly different.
I have seen on here where it is said that “if you have seen one case of Alzheimer’s you have only seen one case”. I understood that to mean that no two progress the same into the different stages but I did not understand the full extent of its meaning. My understanding was that while Kathryn (my Loved One) is in stage five and may not have arrived there by the same path that another Loved One did that once they were both in stage five they had the same limitations as all the other Loved Ones in stage five. After reading everything here I see that it goes way beyond that and that the differences are not simply in the path they take in reaching the different stages but in every part of each stage.
I’m not sure how to put what I am trying to say into words. It’s like if you look at stage five you might see six or seven things that are labeled as part of stage five and once our Loved One has all the parts of stage five they are in full stage five. But that each part of stage five may have 25, 50 or even 100 smaller parts that make up each part and that while our Loved Ones may have enough of the smaller parts to make each part they may not have the same smaller parts.
I hope you understand what I am trying to say. I’m not entirely sure I do. It’s about as clear as mud now.
Thank you all for taking the time to answer it does help. JimB
Absolutely, Jim. My husband actually DID do something with me today: he ate sushi with his chopsticks. Now this morning, he asked me what to do with an orange wedge (he has an orange cut into wedges EVERY MORNING), he couldn't remember for a minute how to eat it - did later- but give him a plate of nigiri rolls and a pair of chopsticks and he goes to town!
We enjoy going to senior meals put on by community volunteer programs at various locations. Most of the people there are in their 70s or 80s so we are about the youngest ones there, but we don't let that bother us. The food is usually OK, sometimes very good, and the company is the luck of the draw -- unless you can spot people you know and sit with them. DH usually says very little. But for us it's a good way to fill the difficult evening hour of 6:00 - 7:30.
I know that my Mom in rural Ohio also enjoys these, but there the meals are usually breakfast or lunch.
We enjoy going to breakfast each Sunday with a group of about 12 friends and they are all aware and supportive. Also go to the Senior Friends luncheons once a month. I try to have someone over to our house once a month also. Otherwise, it's "go to Lowes or Walmart" and let him drive the electric cart! He does so well with that that I was afraid he would start about driving again but not so, thank goodness. He helps me prepare meals by setting the table, chopping veggies, etc., but does none of the cooking. We go to a few yard sales each weekend but I think he's losing interest in that, which is good, because I have a ton of stuff to get rid of in our sale this year!
It's difficult to get my DH out of the house but when he does go somewhere with me he stops people he thinks look interesting, or maybe they're wearing a cap with a school one if his kids went to or the school where he worked, and starts talking with them. Half the time I'm halfway into the store before I realize he's not near me, I look around and there he is, talking to someone. I have to be really patient when he goes somewhere with me because I have to let him talk, until I can see that the other person wants to go, and I firmly grab him by the arm and try to get him to come with me. Does anyone else have a spouse who does this?
No, Bev, my DH does not talk to anybody except his best friends. He does respond in a friendly way to people who address him by name, even though he usually doesn't remember who they are.
Bev,my DH does the same thing. He has to talk to anybody who will listen! I try to stand by patiently, for a few seconds, then try to get him to come with me. Most people are okay with it though - there does seem to be a lot of lonely people out there; and DH seems to be able to find them!
Yes, Bev and Vicki. My DH does the same thing. He stops and talks to everybody he sees. I stand and wait for him. Most people seem to enjoy talking to him and apparently have no idea that he has AD. He also enjoys talking to children. When he does, I try to stand there with him. I want the parents to feel at ease. I usually mention our grandchildren and that we miss them being little since they're all grown up.
As for what we can still do together, seems that we spend a lot of time going to doctors, dentists, medical fitness and other health related things. We do usually manage a restaurant meal on the way home and eat out with our close friends once a week. Church on Sunday and that's about it.
The big phase Dh is in, according to the neuro is apathy. I have to agree. The only way he will be involved with conversation is if he is alone with a pal or two..if a neighbor comes over, however, and I come into the room he shuts up and leaves the talking to me. If I ask what he would like for lunch it is " whatever you're having"..if I ask would you like to go for a little walk.."no". He seems happy to scan the paper in the morning and then go turn the tv on and doze between shows. At least for now I can get out to do errands and on the other + side I can now get into cleaning things and tossing things out or getting things ready for donation without too much interruption.
I try to be right there when my husband talks to children as well. I never know how receptive parents will be to this strange man talking to their kids. As for the adults, I haven't noticed anyone minding talking to this stranger either. They have been really nice to him, and I'm grateful for that. I think, though, that, hopefully, this summer will be a little better than last summer. That was the time I was afraid to even let him go to the mailbox alone for fear he'd meet someone or see something that would set him off. He, most of the time, is a little more placid than he was then, although this past Sunday evening he began thinking the neighbor was doing things to make him mad, and that continued the next day. I pray this won't be a problem this summer.
By the way, do any of you go through periods with your spouses where they seem to remember things that make them angry fpr days but forget other things in a short time?
Yes, Bev, my DH does remember things that made him angry but forgets other things shortly. Our little doggie was attacked almost two years ago by a huge German Shepherd, and DH was walking her; knocked him down and took Millie and almost killed her. I was able to intervene; but Millie was in the vet hospital for 3 weeks - she did survive barely and is okay now. But...DH remembers every little thing about that afternoon and her recovery - and will bring it up time and time again. Yet, he can't remember hardly anything else for 5 minutes. Strange.
Jim, this was a wonderful discussion. Thanks for starting it. We do so much together compared to others. this spring, we made four fishing trips. We do yard work for his parents and ourselves. However, pretty much everything that we do is at his whim. If he doesn't want to or doesn't like the idea, then it doesn't get done. His anger problem has been bad this month, so we have spent way too much time arguing, not talking, or me "bitting my lip." Even easy, simple things have become way to complicated lately.
So far, hunting is out of the picture this year. Although that could also change at a whim.
Bev. I,too,keep close when my husband makes a fuss over smalll children when we are shopping.I'm not sure either if parents like it.He loves to go shopping so I think it could be a big ptoblem.We eat out a lot(he won't try new restaurants) and then walk around any Goodwill nearby.Unfortunately,they are everywhere and we have boxes of little crap.He gets really hyper if I say he can't buy something so I just let him buy.We also spend a lot of time watching our bird population.We have 5 feeders on the front porch and many more in the back yard.Keeps him busy filling them and I do like to watch their habits and routines.
Fascinating discussion thread! At my weekly support group meetings I, too, continue to be amazed at how different our spouses may act with respect to one thing or another although they are all in the 'same stage' of this horrible disease. In my situation, I'd say it's not quite the apathy that mimi described but instead it's a total lack of initiative. My wife will often say she has nothing to do and feels like a 'prisoner' in the house because she can't go anywhere or do anything anymore. (She hasn't driven for about 9 months.) I continue to ask her where she'd like to go because I or our daughter can and do take her wherever she wants to go, but most of the time she simply says, "I don't know." I'll remind her of how she used to enjoy playing the piano ... but she says she doesn't want to play anymore. I'll remind her of how much she loved to work on her jigsaw puzzles ... but now she doesn't want to do that. Or do picture album scrapbooks ... doesn't want to. I'll remind her of a growing pile of clothing by her sewing machine ... but she hasn't used her machine in more than a year. I remind her of friends waiting for her to confirm 'dates' to go to museums, etc. ... and she says she'll contact them, but she never does. I remind her of how much she enjoyed reading ... but she rarely reads books anymore. She continues to enjoy doing things with me ... going to plays, museums, restaurants, whatever ... and with our daughter when one of us initiates the activity. But she will no longer take the initative to arrange anything on her own. She continues to play one particular word game program on the computer for hours each day ... and enjoys it ... and occasionally will work on a crossword puzzle or skim a magazine ... but that's about it. Each evening starting at 7 p.m. we cuddle together to watch TV and that seems to be the high point of the day.
acvann--you mentioned the cuddling together in the evening to watch TV. I started that recently when I noticed my husband was getting anxious after darkness hits (sundowning, I guess). He would say things that clued me in on the fact he didn't recognize where we were, etc. So I started sitting next to him and hugging, to reassure him. Now he had learned the pattern and actually calls me over and pats the sofa next to him, indicating he wants to me to sit down!
And because we still CAN cuddle together to watch TV, or go out together to various places, I can't complain TOO much because I know that all too many visitors to this site can no longer do that with their spouses. As we all say, enjoy today because we never know about tomorrow.
This is amazing. We too have just started to cuddle while watching TV (sometimes even earlier in the day, like on this rainy Monday). It seems to calm him and make him less restless. I love it!
Yep, Jeanette. I love it too!! The hand holding and cuddling while watching TV together each evening is something we both look forward to and I am very thankful for that.
I've noticed recently that we cuddle watching TV. We used to cuddle in bed at night before going to sleep, but she gets in bed before me and lies on her side with her legs curled up. She doesn't seem to understand how to straighten out so we can cuddle, so that is over.
My husband sits in his chair, and then goes up to bed in a hospital bed in his room, so there's no opportunity to cuddle per se, but I've learned that he'll calm right down if I hug him and kiss him as he sits in his chair. Sometimes he says, does Clare know you're doing this? Sometimes he says don't tell my mother. But he's calm.