Had to text my partner’s son yesterday and tell him that if he phoned his Mom, I could guarantee she would smile for the rest of the day, even if he did not comprehend a single thing she said. Yesterday was her birthday. This text was in response to his Facebook entry showing her pushing a power mower (four or five years ago) with the entry - “my mum, always makes me smile”. Facebook is currently beyond her comprehension. He did call. She did smile. And for the rest of the day.
Much of her world now thinks I am crazy: either because I let her mow the lawn even though she has dementia or that she could not possibly have dementia because she is currently mowing the lawn. Oh well.
An old promise has come back to bite me. I, who told her I would not lie to her hand out fiblets like candy: Deceased family members, hers and mine, are now visiting with other family members, deceased or living, but will be seeing us soon. I plan with her to do things tomorrow, things that will never happen because tomorrow never comes.
My partner used to run away from home because she was pissed - and who wouldn’t be if people were all the time trying to redirect her? Now she runs away from home because home is not home. I’m tired of running away from home with her. I myself sometimes feel this is not home, because I am the only one trying to make it homelike with no help from my partner. Partners, itself, has become a strange word to use to describe us because we are not partners anymore. The bond between us, though still real, has changed totally. So let’s both run away. But anywhere we run to will be the same. If we run away too far to run (figuratively speaking) back home, good neighbors will come to our rescue.
I thank God for good neighbors, family, and friends. They have been faithfully inviting themselves over for dinner, bringing part of the meal with them. I could not survive without them. And we go out with my brothers weekly to see a movie and go out to eat. The movie we go see is generally not the movie brothers see (to much gore and reality) but we wait for each other.
And I thank God for this web page. I visit daily with my friends here at Alzheimer Spouse, even though I don’t always write. You are a very safe place to visit. And even when I don’t write, I hope you all know I love you.
I am glad I started with this site early on because I learned early not to make promises that can't be kept. My MIL literally killed herself caring for my FIL. When my husband was diagnosed he made me promise not to do that and I did. I totally intend to keep that promise. But from the people here I learned you don't promise to not place them or not to lie to them or any other things we can't keep. I am thankful for that.
Yes there comes a time when we are not really a couple anymore. Some may be able to keep that feeling but for me it is too much caregiver and has not been spouse for years.
I am glad to hear you have support of neighbors. Living in an RV park where many know of his condition, I like to believe they watch out for him so if they saw something odd they would let me know. More important, they do not mind him stopping and chatting even though he doesn't remember what is said and will ask the same question or repeat the same comment. With some, especially women, he will share some of his feelings where he won't (never have) with me. He tells them he only goes to day care to make me happy, that he doesn't like it. Fortunately the report I get is he socializes, always chatting with people making them laugh. My only complaint is they don't have activities that men would enjoy. He doesn't play games - never been a game person. If I had the money there is a memory care place that has day care too where they have activities for them men like working on bicycles and carpentry projects - all ones that are safe.
I do not tell “fiblets” or “little white lies.” I tell outright whoppers, real pants-on-fire lies.
The staff in my husband’s dementia unit are adept at this. Last week, a man was adamant that he would not get ready for bed because he was waiting to catch the train to go home. The nurse told him that the last train had broken down and he would have to stay overnight until the next train came in the morning. He said OK and went off complacently. If she had told him the truth, she would have said that there was no train and even if there was, he was not allowed out of the locked unit without an escort and even he was, the “home” he wanted to go to did not exist, etc., etc. Then they could have had a big argument about these true statements.
I think that, in general, it is very bad policy to lie. (What a tangled web we weave when first we practice to deceive.”) But as far as the morality of the thing goes, I do not believe that lying itself is intrinsically evil; I think it is evil only when it is done with bad intent, i.e., to harm or cheat or slander someone (“Thou shalt not bear false witness against thy neighbor.”) Before AD, I almost never lied. If I did not want to tell the truth I just kept my mouth shut. Now I lie all the time to my husband. I do this because I cannot expect him to enter my reality. I must enter his reality. On the one hand it is quite liberating to exercise my imagination in this way. But it also makes me crazy, since sometimes I feel like I’m losing my grip on reality, talking about the current activities of long-dead people who I never met.
Charlotte, Your description of your neighbors at the RV park makes me think you made the right decision when you turned down that apartment.
I admit I am a big liar. I lie straight to dh face. I lie by omission and I smile and nod when I want to cry. Would it help if I told him his ideas and plans are never going to happen. No we are not building a home on the lake, no we are not going to Italy or Alaska . Yes we have more than enough money. The list of lies are long but my wish to protect him is longer. I know one thing I won't lie to myself.
I think we all realize it is cruel and pointless to be confrontational and contradictory with an Alzheimers patient. They are in their own reality, and you as the caregiver, believe me, are not going to re-orient them into the "real" reality. Bend the truth as much as you need to to keep them feeling secure and satisfied. When Larry would say late in the evening that we really should call his mother, as we hadn't talked to her for a while--a woman who died twenty years before I even met Larry--I would say, "OK, but we better not call her this late at night. We'll give her a buzz in the morning." And of course by morning he had forgotten all about it.
No matter how excruciatingly and meticulously truthful we are in real life, in Alzheimer's Land you have to fudge it.
For the longest time my partner knew she had short term memory loss - in fact we used CRS (Can’t Remember #%&*) as our code word, and I still use it now when I explain to her why she cannot go off and do something on her own. For now, reminding her works reasonably well most of the time. For some reason, she who can remember nothing can always come up with the words associated with CRS after a little thought. The word Alzheimer’s always threw her for a loop, “When was she diagnosed? How long ago? Does her family know? Am I sure? How come nobody ever told her?” But CRS she can deal with.
For the longest time she would tell cashiers she had short term memory loss, and they would patiently work with her. I would remain close by in case intervention and assistance was needed. We always talked with family and friends about her dementia when we were together.
We’ve moved way past that era, of course. And fiblets are now a part of our daily life, handed out as I said like candy. Been thinking of Myrtle’s whoppers, though. Haven’t tried to use them yet, but it now occurs to me that maybe the time has come - if she is going to run away (go home) at night time, perhaps telling her that her son is expecting to meet us here after his night shift. We’ll go after he gets here. Repeat, repeat, repeat. It is one thing to run away together for a while in the day time, but after dark? Learned the hard way that, like Elizabeth said, confrontation is cruel and does not work. Which does come to the new fact that I have to alarm the doors. In winter it was too cold and too dark for her. But it is summer, it is light, and she will go, if redirection has not worked. I just don’t want her to leave when I’m not looking.
lindylou, I remember the stage you describe as a very hard one. My husband was still able to put up a good argument about whatever it was he wanted to do. Usually it was to "go home" - to the farmhouse that he left at age 17. In the warmer and brighter seasons, I would agree and drive him down a country road for awhile and when we returned he would recognize our house as "home." But the winters were bad since like you, I refused to leave the house when it was dark and cold. What a hard road this has been. But as you say, we have each other on this site. No one else can truly appreciate what we have gone through and are still going through.
Onewife, You said it all. What's important is that we don't lie to ourselves. But how could we, since the truth is staring us in the face all the time?
Lindylou one of your comments has been stuck in my head since you first started this thread " we are not partners anymore - the bond between us, although still real, has changed totally". Took me a long time to accept that this is not a partnership anymore the relationship is totally unidirectional. Yes I get the satisfaction of knowing I am in my mind doing the right thing, that I am taking care of her to the best of my abilities and that if the situation were reversed know she would do the same. But it is not a partnership anymore and I for one want and need more in return.
Getting to this point is helping me with the tough decisions. I have mentioned for months now we are on the top of the list for placement well still waiting living in limbo everytime the phone rings thinking it is the call. Have another respite booked this coming Thursday for a week dreading taking her but looking forward to it know I need the time. Lots of options but Nothing planned which is ok don't have the desire or will to really go anywhere just to regroup.
Rona, When I first discovered this site, about six months ago, I was reading your threads about respite, the challenge it was for you, with great interest. I knew by then that my partner would not be going with me to my son's wedding. The thought of putting her in a nursing home for respite was tearing me apart. I was finally able to do it, feeling no (well maybe a little) guilt. And I was able to truly enjoy the rustic wedding in the woods, without either the responsibility or anxiety that having her present with me would have entailed.
What is happening now, what I guess has dissolved the partnership we had before, is the slow (maybe not so slow) disintegration of her personality. I look for her. I don't find her. I see an anxious being who is strolling around this house moving things around. She does not eat with me, except at restaurants, because there are things she needs to do at home - moving towels, taking things out of the refrigerator, rooting through the trash, clogging the toilet. And she is not happy, only anxious. Then when she is thoroughly exhausted she will sit and eat. Then she will start again. And when exhausted she will sleep - maybe at 8 PM, maybe at 2 AM. I talk with her, but she seems not to comprehend. I hold her, she accepts it, but does not reciprocate. I miss seeing even the glimmer of the person she used to be. I can't find it. I feel nostalgic for the past, but it is over.
My next respite comes in September. Enjoy your respite.
We are starting ativan for her, not for me. never used this kind of stuff before.
Lindylou, do not be afraid to try medication to alleviate your partner's anxieties. Give it time to kick in, titrate it if the dosage seems too much, but do try them.
Do not listen to those who call themselves experts and advocate NO psych meds for Alzheimer's. They have never walked our walk or probably even spent much time actually working in a unit. Whatever you can do to make your partner comfortable should be the goal. Lexapro (antidepressant), trazadone (sleep), and risperdal (agitation) have helped my husband beyond measure. Keeping neurological modulation drugs away from a patient with a serious organic brain disorder is like keeping pain medication away from a patient with bone cancer.
If I advocate for anything after my husband passes, it will be to shine a light on the ridiculous policies concerning Alzheimer's. (Like no restraints on wheelchairs for people who cannot remember than they cannot walk and subsequently fall all of the time resulting in fractures and hematomas. How can allowing some poor soul to injure themselves be better than allowing restraints? Doing away with psych medication is my other big button pusher.)
We went to Cabo last December, knew it would be our last trip, and prior to going I got a prescription for adavan for Lisa as didn't know how it would go. (Everyday she tells me she wants to go to Mexico). Have hardly used any except last night. She has been waking up anxious disoriented, who is here, are you here, are you the husband. Anyways was going on too long so gave her one and she got back to sleep. Right now she is on no medication at all, she is basicly healthy, looks good and if you saw her would think nothing wrong at all. Went to our cabin weekend before last, that is getting hard to do as well, as soon as we get there she wants to come home, she had some alone time with one of our friends and the comment was that was the best conversation I have had with Lisa for a long time!!! Then she said probably because it was just the two of us which is exactly right. Her most common response to me is I don't understand what you are saying or I can not hear you.
I know what you mean lindylou lisa spends her time going through the drawers pulling out her clothes I spend my time picking them up. When outside she just picks things up leaves etc weeds, but she doesn't know what is a weed and what is not. Went for a walk on the beach took us a long time as she kept picking up the seaweed and throwing it towards the ocean.
But, I have had a bad bout of allergies the last couple of weeks, she keeps wanting to help me tells me she loves me and doesn't want to loose me. She wants to take care of me. So sometimes she is not sure who I am and at other times she tells me she loves me and wants to take care of me. That is what makes this so hard, at times there are glimpses of the old Lisa, maybe that is wishful thinking. I think maybe she says those things as they are ingrained somewhere she knows she loves me.