My father suffered with Alzheimers.

Although its nice that her soriety sisters want to include her on trips, it was my experience that long periods away from home only added to my father's confusion.

It sounds like S does not accept M has an illness. At some point he has to realize that she should not be left alone and he should not expect that she can do the things she used to (like prepare meals and make telephone calls).

Her 'sisters' can help by staying with her so that he can get out of the house. When you are with her, ask her what she would like to do. She may not be able to answer, or she may be happy to take a ride in the car...my father was fine walking with me to the corner and back. She may be happiest watching television, every patient is different and every day can be a new adventure. Prepare and accept the fact that you will hear the same stories over and over.

As the disease progresses, she may not remember who you are. Don't blame her, its the illness.

There are some good tips on the Alzheimer's Disease website, I'll try to include the link.

good luck, thank you for wanting to help her.

Edited to add link

ML

Here is a link that might be useful: ALZ caregiver info

This post was edited by maddielee on Sat, Jun 22, 13 at 11:01

Fear on trips is something to watch for as sometimes they forget where they are and panic. When Grandma looped her conversation I played along so as not to upset her. Sometimes she would drift and if I started to sing it would bring her back (she loved singing). I hope her hubby "gets it" soon not alzheimers but the ramifications. You sound like a great friend looking out for her like this.

During my college years I worked as an activity aide for an Alzheimers wing at a nursing home. Any activity that can keep her engaged and thinking/moving would be helpful. An arts and crafts activity, supervised baking activity, singing together or playing music and dancing a little etc. Their minds regress and they can become very childlike in their behavior at times.

As far as trips, I'm not sure that would be wise if she's getting worse. I agree the unfamiliar surroundings could cause some issues. Where I worked many of the residents did sundown, one moment they would be fairly clear and know who I was, and then all of the sudden they would be confused and I became their Aunt, their Daughter, their friend etc. from their past. At times some of them became combative (I got hit with all kinds of things, canes, fists, stuffed animals, books etc.), some even tried to escape during all hours of the day and at night because they didn't understand where they were or what was going on, which is why the Alzheimers wing where I worked was a locked wing.

When my MIL was diagnosed we got a guardianship set up. It was important to manage so many aspects...medications, bills, moving, finding a rest home, etc. Her doctor told us not to take care of her ourselves as it would be a significant strain on our family. And it was, just experiencing the decline and having to leave her after a visit.

Her husband is either hoping this isn't happening or really doesn't understand. A trip to the right doctor to bring reality in is important for both of their safety and her personal care. He has to become part of this, I believe it is a responsibility of a loved one. And not to be too hard on him, the flight or fright emotions may be all he has right now. Perhaps it is time to at least look at home care or someone to drop in and check on her, plus interface with husband.

A trip? I wouldn't do this. Her memory is set in the past and confusion can occur over the smallest new environment. Even going out with so many people could be overwhelming for her. Sometimes this pushes back rather than forward with memory levels.

We would only take my MIL to familiar places, like the local Village Inn she loved for pie. The conversations were always of the past and she seemed to feel like it was a place she belonged.

I can remember her calling me and saying she was going to sell the car because the insurance was too high. My husband said not to do that, he would pay. But a month later she told me she sold the car. He was furious and the buyer had taken her for a ride on the price. We found out later that she was getting lost and became afraid of driving. Didn't want to tell us, but at least she was aware ahead of time and knew enough to make the decision for her safety and others.

Ask your friend where/what she would like to do, or perhaps you remember something special done on a regular basis. Make it a short trip and a lot of room for her to talk about anything.

Your ideas about doing things at home with her is a positive. Not eating is common and not doing things on her own may be some memory left telling her she cannot do those things again. Could her sisters help with the learning exercises she needs? Drop by once a week for a short time?

This disease has no standards. People respond in so many different ways with it. And can change from one moment to the next. Even personalities change in very significant ways and not recognized as what we once remembered about them.

My mother sat with my aunt for awhile who had alzheimers....the thing that kept her happiest was watching childrens' shows on public tv....sesame street, teletubbies, etc. Don't ask me why, but they delighted her.

My Uncle liked being in his own environment. Often short term memory is the first to go so his long term memory worked for quite awhile. He didn't like new environments and travel would have put him over the edge.

But every brain disease progresses individually. What worked for Uncle may not work for another. He used to sort snacks from Costco, used to put in the kids lunches. He was a helper kind of guy and those darned snacks kept getting mixed together somehow. LOL.

I introduced him to my bathroom like it was a brand new addition every time he had to use it. (He was looking for the outhouse of his youth.)

Alzheimer's scares me. It is such a sad disease. Bless you for caring. I've noticed it is typical for most of us to live in denial of a loved one's deteriorating condition for as long as possible. Guilty, for sure.

Thank you all for your kind responses. I shared them with 4 of my sorority sisters today.

maddielee - The website really got me thinking more about what to do with M. First of all, my first intent of spending 3 to 4 hours is probably too long to expect to keep her engaged. I have to adjust my thinking on that. Your assessment is correct: Either S doesn't understand, but, since he's been advised by the dr and has done some reading, I think his attitude is more like benign neglect. We cannot take his place, but can spend time with M.

CLBlakey: So far when we take M on trips (max 3 days) we literally pass her from one to the other so she's not on her own at all. We've seen the look of panic come over her face otherwise so we're very careful. OTOH, S says she's started expressing displeasure in coming to meetings, so our time with her as a group may be less and less. I suggested to my sisters today that M may not participate in our annual beach trip this year (Sep) or she may be overwhelmed because we are going to a different house than we've used for the last 20 years.

roobear: I never thought of her "escaping" at night. We'll have to lock the doors and hide the key. Thank you for that tidbit. The activities you suggested are helpful. Anything we plan to do with her, we'll either have to bring our own supplies/equipment or send S a list so he can set everything out. M will never remember where things are in her house.

Technicolor - Yes, we plan to be with her at least once a week. I understand she may not be able to anticipate our visits but it will help us and let S know we care about her. It would be a bonus if our actions and ideas would help him to care for her in a different way.

Annie - My goodness, I thought I'd exit this world without ever having to watch Teletubbies! Maybe not.

golddust - Yes guilt is a strong motivator. That and there, but for the grace of God, go I. It's scary.

Thank you all so much. I'm feeling very small and unworthy today.

" I'm feeling very small and unworthy today"

You have a wonderful heart. This experience most likely will be with you forever. Knowing you have cared and done so much for her will ease the pain. This is a tragic disease, one that affects another beyond. I don't think the medical community even knows what the patients thoughts are.

You definitely are not small and unworthy, but understand the feelings knowing your life continues on normally. May we all remain healthy and strong.

The concern you have for her is far from being small and unworthy. I hope if my time comes I have a friend like you!

I think the main concern isn't the trip (which I wouldn't do with her), but to get her husband to accept she is ill. I don't know them but it frightens me that he leaves her alone at this stage in her disease and won't even acknowledge she needs help, ASAP.

If one of your sister's is close to the husband, I'd tell her that the first priority is getting him out of denial and start taking serious steps. He could come home one day and she could be gone.

But bless you for being so caring!

My MIL had it. In our family my FIL hid it from the family. Suddenly he was making arrangements for visits etc. He never reached out to the family about what he was seeing. And then...he died very sudddenly. And my husband's oldest sibling, the only daughter went into denial as we all began to see the signs. She was adamant that mom was grieving. Finally, after years went by, a dx was made--well as much as can be when the patient is alive. (Not sure about now, but then a true dx could only be made after death during an autopsy).

As the disease progressed there was a period of time when she "knew" something wasn't right, and it made her very anxious. We would find her looking through her purse, and she had no idea why, but it was a frantic moment for her. There were times when she was insistent that someone call her a taxi so she could get to the train and get to the beach--"It's summer, I need to get there"...

Then there is a point when a sort of peace comes. The anxiety was finally gone, and she was always in a good mood. Not all patients enter into that "good mood". But everyone loved her at the "lockup" as we all fondly called her assisted living facility. They had a code that needed to be entered to be able to leave through the door. Worked well, the patients with memory issues...well, they couldn't remember the code so they stayed put.

She loved listening to music. She loved the singing. She didn't participate, no eye contact towards the end.

I would suggest you find a place where maybe she can "participate" in some sort of activities for people with memory issues. (Even if participating means watching) I am not sure if things like this are for residents of these types of places only or if you can get her into something like that as an outpatient.

Pictures of grandchildren and family members are very important. Make them BIG so she can see them. Casually mention the names of the people in the picture as you point at them. You never know when she will have a clear moment. And you just never know if she does remember someone but can't put the words together.

Here's a happy story....One day she whispered to my husband's brother who was visiting her--"this is such a nice hotel. And they never make me pay". She was whispering it because she thought if they heard her they might charge. Little did she know, she was paying. But things like that still make us smile.

I wish you the best. It is a difficult thing to watch. Stay supportive of your friend's husband. Perhaps he needs some professional help too. Someone who can help him understand what is going on.

You are a good friend. She can't tell you that. But it is true.

hugs
bee

PS--just thought of this--if she can remember specific stories from her younger days, get them on tape. video is best. Audio will do. Some day, the stories get shorter, and finally they go away completely.

Husband S has just made a change to his normal routine to avoid leaving M alone so much. That's a first step. None of us feel close enough to S to advise him on what he should be doing. We're just accepting the fact that he is not a nurturer and the son and daughter do not appear to be doing anything at this time either (both live in distant - though driveable - locations, raising very small children, jobs etc). My concern (not yet shared by my sisters) is taking M on overnight excursions based on roobear and bee's comments on "lockdown". Daytime - not a problem (yet) as we literally are "hands on" (really - we hold her hand) and know that what she says one minute is forgotten the next.

Bee your comment about how MIL acted with her purse - M is already there. She is manic about her purse.

One of the sisters wants to help M organize pictures. I'll pass on your suggestions.

Thank you all for taking the time to respond. It's helping me deal with the melancholy I feel everytime I think of M.

Years ago, my grandmother had Alzheimers, although there was not a name for it then. As with Beekeeperswife's FIL, my grandfather had taken care of her so well that none of her sons realized there was a problem. When he died of a stroke, the family began to realize there was a problem. Once, my uncle took her down to his place at the shore (when dad was young, they had a house in Stone Harbor, too, so she was used to being there since that is where all summers were spent forever it seems). Well, she disappeared-took her purse and took a bus all the way home to her old house in PA outside Philadelphia. That was when they knew she needed to be in a safe place, so they moved her to a home near us.

So, I would advise against any overnight trips at all. Day outings to familiar places might be nice for now and would be a nice break for her DH. It is such a difficult disease for family members, especially since there comes a time when even dear friends such as you visit less or not at all. I think you are a gem for trying to keep her in your life. You may need to alter expectations as time goes on, but you can still be part of her life and she part of yours-not unlike the husband in Away from Her with Julie Christie.

My mother was a diabetic. She and my sister lived in the same town. For three days, my sister would call Mom, but get no answer; my sister thought she was outside working in her yard. On the fourth day and no answer, my sister went to Mom's house - found the doors and windows were open and Mom did not answer when my sister called out to her. My sister found Mom lying on her bed passed out. We have no idea how long she had been passed out.

That resulted in my sister, brother, Mom, and I meeting and talking to Mom about selling her house and moving in with one of us. Mom cried, but agreed stating she knew she could no longer live by herself. That remark puzzled us a bit.

However, after Mom moved in with me, I realized she was having issues such as those experienced by those with Alzheimers. The doctor did a test and confirmed she had that terrible disease and probably it had started several years before (that made us all realize what Mom meant when she said she could no longer live alone - she knew something was wrong).

To make a long story short, Mom did not like going out anywhere, evidently just the change to living with me was disorienting enough for her. When she moved in with me, I worked. Mom would fix her own breakfast while I was getting ready for work. One morning, I walked into the kitchen and she was just standing there - she looked at me and told me she couldn't remember how to make coffee or prepare her oatmeal (tears were streaming down her face). My point is, I hope S's husband is aware that she may forget how to cook and he take over that responsibility.

What made it impossible to leave Mom at home while I went to work is that she became a "runner," meaning that she would leave the house to go somewhere else - to her sister's (who lived 100s of miles awa), to the grocery store, to a former neighbors. I finally realized I was going to have to place her in a facility, it was the hardest thing I have ever had to do. My brother and sister agreed that is what had to be done, but it wasn't easy for any of us to make that decision.

I will quit rambling now.

P.S. Another thing I had to do while Mom still lived with me was to put all of the sharp knives in an area where Mom could not get to them. This was because she got mad at me one day and came at me with a knife (she truly did not know what she was doing); she had always been a docile person and this was very unexpected. However, in talking to the doctor, he advised that this was another Alzheimer's development and he stated I should hide all of the sharp knives. Just another symptom of this terrible disease.

This post was edited by walnutcreek on Thu, Jun 27, 13 at 13:24

My fil had Alzheimer's and I agree with everything said above. He was best when in familiar surroundings. Maybe your group could visit in her home? Are there games she likes to play? Although as fil got worse, he couldn't remember how to play games or even follow the plot of a 30 minute tv show. But he continued to enjoy music and seemed to remember the songs from his youth.