Is it “hyper vigilance" if the threat is real? I’m not afraid of physical violence, but just the day to day ordinary dangers - “Did I take the knobs off the stove? She’s been in the bathroom too long, is she stuffing the toilet with face towels? Has she taken her shoes off? - that means she’s going to try walking on her leg brace…..danger, danger, danger. I can’t hear if the water is running over the sound of the air conditioner, maybe the sink is overflowing, or toilet. Better check. She’s mistaking other objects for the toilet, where is she now? She’s been quiet for too long, what is happening? Unless my partner is sleeping she is busy and her busyness has no rhyme or reason. Only the quality of mild desperation. Partner has Alzheimer’s, I have Craziness.
Like Jazzy, I want to shout and yell and throw things.
But I cannot ever lose my cool. The stifled “gaak” is all I’m allowed. Otherwise, she’s running away from home maybe with no shoes or cane, and I’m running away with her too, but at least I have grabbed the house keys, her cane, my pocketbook and the cell phone first.
This hyper vigilance is a learned behavior. How will I ever shut it off when I no longer need it?
I thought I could do this. I took care of my mother with Alzheimer’s. But she was old. She liked to sit and be waited on. At night, with the help of a motion sensor, I could assist my mother to use the commode and then go back to bed and really get back to sleep. And her (my) blessed family pitched right in.
My partner is up and down at night like a jack in the box. I have to get up some of the time to make sure she finds the bathroom and identifies the toilet. But frequently she gets up so quietly I do not hear her. Don’t know until I wake up and call her name that these is any trouble.
Time to try the motion sensor again? Then I might never sleep. Thinking of blocking the bedroom door with the standby commode we have (for in case the toilet is clogged). Then at least she will be confined to the bedroom nights. Might work. On the other hand she may go manic. Worth giving a try anyway maybe.
How many rules can one person remember? Don’t unbuckle car seat until you’ve come around to the passenger seat. Lock the dirty clothes in the washer and sort later. All rags and small towels must be completely hidden at all times unless in use. Immediately empty clean dishes from dishwasher. Remove the stove nobs after use, and never leave the area if anything is cooking. Top shelves are finite - find another place for this, that and the other and hope I remember where I put it. (I’m not only looking for things she’s moved, but now things I’ve hidden for safekeeping.) Probably need to make a list. If I make a list, remember to use it.
Well then. I feel better for venting. How people have done this for 16 years is beyond me. You are amazing. Don’t know if I can last another year.
My partner is in LTC and even so I had to go and take him out for coffee both Saturday and Sunday as he was so upset with his life. It just tears your heart out. Now he want to know what is wrong with him. Why am I like this? What is happening to me. A week ago he knew!!
You sound like it is your health that is now being affected. Don't let this illness take you down. Have you considered placement? Not for her but for you. I still have to run down there every so often but now I don't have to be so vigilant and he is safe. There are more of them to care for her and now it is just watching for little things that are not being done. Like giving him tap water as cold water causes him to have stomach cramps. More activities for his level but he is safe! I seem to be stressing on his safety and that is most important along with my, and your sanity.
Day 6 of placement everything fell about day 4 then yesterday she had a good day. I did not go to see her and the suggestion is that I stay away to give her time to adjust. Lindylou it was day 3 where I had a realization. I got there to find her with one flip flop on a scetcher on the other foot, wrong foot by the way and dressed rather warmly for the day. I asked the staff and they said we got her cleaned up and ready in the morning but she keeps going in and changing her foot ware etc. She has been getting up at night going into others rooms, taking things, leaving her things found one of her shoes in another room.
So I went to get her changed and looked at her clothes, I had everything nicely arranged, sock and underwear drawer, shoes in bottom of wardrobe etc. Everything was all over the place most clothes in a big pile at the bottom of the wardrobe, could not find a pair of shoes anywhere just one of each, shoes in the drawers, pictures in the drawers etc etc. I got everything back in order found most shoes was only missing one slipper.
It made me realize how much I had been doing at home to try and maintain. We go along and do what we have to do and all along thinking I can do this it is not so bad she is trying the best she can. But in reality it is not fine. Lindylou don't wait until you crack sounds like you are getting close. Take care of yourself.
Hopefully today she will have a good day will phone soon and see how she is doing.
lindylou, My husband also had unlimited energy and got into a lot of trouble but your partner is way worse than my husband was. I don't know how you can keep up with her, not to mention maintaining your own sanity.
lindylou, there's not much I can say to encourage you. Dan had not reached that stage (I guess that's what it is), but different people go through this thing with different problems. I will keep you in my thoughts...
To all of you who are suggesting that I start considering placement for my partner, I am giving it a lot of thought. I want to thank you all for your support. I don’t feel alone when you are all in my corner. I will feel less like a failure, and more like a survivor because of you when it comes to placement.
I made sure yesterday that the PACE program was aware of my stress. I am now scheduled for a week of respite in October, and another in January. I hope,and trust, I will know when the time has come for placement. And don’t fall apart altogether aforehand.
And now for another rant - if you are ready for it.
Once, when I was in my early 20’s, I got myself into trouble by expecting my grandmother’s son and family would want to be engaged to a degree in her care by visiting. I asked if they would like to, and I got lambasted severely for referring to her as an old lady, which, they told me, was very very very rude, and something they would never do. ( My grandmother was 87).
Well I got into the same situation again this weekend with my partner’s family. When I suggested that there might be ways that my partner’s siblings and son could help us out. I didn’t even get a chance to say how. First, didn’t I know they were all working. And then a specific list of everything they had to do for the next month of Sundays. And to top if off, suddenly the next day, I was being chastised on Face Book for making a comment.
You see, I asked “what is so funny about Alzheimers?” when my partner’s family members were “LOL so hard they had to pee” about a video put on my partner’s page by someone who thought it was funny. I made a mistake and found myself watching an old man trying to start a vacuum cleaner by treating the retractable cord like a pull on a lawn mower. “Could anyone be so stupid?” they were chortling, as he kept on trying and trying. It made me cry and then made me angry. And it was not funny in my eyes at all.
Now I am the rude one. I’ve hurt feelings. I am apparently a very bad person because the originator of the video, which she found somewhere, “never in her life wants to hurt people and now I’ve gone and hurt her feelings”. But how is my comment hurtful or rude? It isn’t. Its just the family pushing me and us away from their consciousness.
Well new rule number 1. Don’t write on Face Book ever.
Rule number 2 should be give up on them participating in any way. I’m not quite there yet. Burning bridges is not my thing, but it may be coming. Especially I hate the thought of giving up on her son. But I don't know.
Lindylou, when it is an enemy like that, trying to cross the bridge you are entitled to set it alight! You do not need the extra stress of dealing with this family so don't bother. I would ask them for nothing and tell them nothing. And as for that mean joke........ You have impressed me greatly to date, with how you have coped with your partner, she is a lucky lady to have you in her corner. But don't forget to take heed of what others here say about placement and your need for it (when the time comes) and take no advice from those that do nothing to help you now. My sitaution was a bit different as my husband had ALS with some frontal lobe damage so I didn't place him but would have done so if necessary. All the best, cassie
You are not a failure when the time comes to place your loved one. In many cases, we find ourselves "on duty" 24 hours a day as they begin to sleep at night less and less. We are human. We cannot go for very long without rest for ourselves. We literally wear out. Placement is a process of enlisting more folks to be on your team of caregivers. They get to do their jobs and then go home to...guess what...rest. You enlist folks for different shifts for every day of the week. Your role shifts from primary....worn out...caregiver to the head of the team. You still have a lot of concerns to see to as you advocate for your loved one, but you do at least get to rest some in between visits. I, too, struggled with the feelings of failure. I am an RN for crying out loud. But I simply wore out when sleep became non existent in our home. We have to do the best that we can but also remember that we are only human.
Lindylou, you are really going through it....as before, there is nothing I can offer except my heartfelt thoughts. As the caregiver, you are/will be the bad guy...I came to terms with that at the start. As for someone being "offended" or dismayed at the video on FB (I have seen it by the way, & thought it was funny!), I have found that finding humor wherever & whenever you can is essential. Not always easy to find it! Maybe those upset by it really have no humor, or it struck a nerve in them that made them feel a little guilt that they are doing zero to help. Just guessing.
We discussed this long ago on this site. Because we are in the midst of AD, we can laugh at the funny things our spouses do but others do not have permission. I detest the 'old timers' jokes from every day people, but I can laugh at them with others going through dementia with loved ones. It is like 'I can laugh at my kid but you can't'. Weird
You got it. When I enter the "locked memory care facility" I put on my pasted gritted teeth smile and turn up the sing-song voice and in I go. Knowing I will NEVER know what I am going to find upon entering the Twilight Zone. Sometimes I see my husband wearing a pair of jeans that clearly are not his, maybe he actually has two hats on that particular day, he wears baseball caps and always has, it's only since Alzheimer's has crashed into our world that he takes to wearing two hats at a time. Go figure. He had on someone else's glasses here while back, but whatever. Eventually the clothing that belongs to him will reappear from the laundry and the glasses will be returned to the original owner... I have to laugh, or I would shoot myself. But, rue the day if anyone else would poke fun, well, they would be hauled off for medical care.
Charlotte, Ladylimbo, you hit the nail on the head. I guess I haven’t stumbled on the conversation here about laughing at dementia. I can laugh with people who understand what it is, and why it is, that they are laughing. A wry compassionate humor perhaps.
My partner has tried and tried to put a glasses case on her foot instead of a shoe until I came in and said that maybe this (her shoe) would fit better. And she has tried to eat peas with a knife, until I gently removed the knife and handed her the fork. Both might make a goofy video for someone I suppose.
But don’t anyone laugh at my partner. Unless you know the context and can perhaps laugh with her. I’d be on their case in a heart beat.
That’s why the video upset me. The man could have been any one, perhaps an engineer, the former president of the US, or a local lawn mower repairman, who has been inflicted with this dreadful disease. And it appeared to me no one even thought why he was doing what he was doing. Only that it was ridiculous and stupid.
Right now I am so very close to this disease my sense of humor may be warped. I can see maybe its funny, Mim, but only when the humor is laced with compassion. But I’m with you. It is important to keep humor in our lives. And I do enjoy Ol Don.
Lindylou, I think I may have read your previous comment incorrectly....I am so sorry! I thought it was the others who were jumping on you for thinking it was funny. Please forgive....my brain is not functioning correctly at this time.
Lindylou, didn't family post old pic of your lo mowing the lawn. Now this video. I think you should talke her page down unless she enjoys this. As for getting family more involved. Good luck! If you make them see the light let me know how that was accomplished. My dh is a busy guy so I get the picture of your home life. 24 hours in a day 7 day a week = 168 hrs. You would think immediate family could spare 2, 3 weekly. No most are very busy things are hectic. I like you don't want to burn the bridge .. Yet.
Thank you for sharing Lindylou. I've been struggling with the idea that he has alzheimer's (and doesn't know it) and I have craziness. He has alzheimers and I am on antidepressants. I also get angry that he just sits there either watching tv or watching me do all the jobs he guaranteed he would take care of when we moved her and he had to have a pool and lawns. while I pull muscles I didn't know I had. I am getting scatter brained with the hyper vigilance and constantly adding to the list of things to double check. But now I realize I should thank my lucky stars he is content to sit in front of the tv watching endless episodes of NCIS.
Well, I’ve had it. Like Cassie suggested I’m burning bridges. I am not calling anyone in my partner’s family. And if they want to learn any information about my partner or include her in any family event, they are going to have to call me. I am not going on FACEBOOK (haven’t been since the last brouhaha). And I am not going to respond to any text except to say that I am no longer responding to texts, please phone.
I’ve learned the lesson about social media bullying that all our young children in this country are supposed to deal with. Its not pretty, and, my goodness, does it ever hurt. The other thing it does is set off in my mind a litany of hateful things I could say back, if I were the kind of person who would do such a thing. Which, I severely instruct myself, I am not.
I’ve run through my mind if I have ever been rude or suggested to them that they do anything but call my partner or visit with her/us on occasion. The answer is no I have not. The rudeness I am experiencing (I just got a text from her mother last night blaming me for something I didn’t even know about) is just an effort to push us away free them from feeling they have any obligation to mother, sister, daughter. If I am a bad person, they do not need to help me, or ask how I am doing. And certainly they don’t need to do anything for their own family member since she does not remember a thing they say/do anyway.
It may take me a day or two to get through this emotionally, it is so foreign to me. But thank goodness for my family and church friends. We went out with the geezers (my brothers and in-laws) to the movies yesterday and my partner and I each received four full body hugs. Hugs we just needed to have just in order to keep on keeping on. I’m having lunch with friends on Friday. And while I need to be loved and supported by these people, I don’t need to burden them with venting. They have eyes to see and actively love us anyway!
As mentioned I woke up the other day and said to myself this is the first day of the rest of my life and I am going to make it a good one. So when I went to see Lisa I went with a positive attitude not going to get upset with the Continual I want to come home, I don"t want to stay here, I just gave her a big hug and a kiss, took her out for a nice lunch, with a beer that she enjoys, and when she said you don't sleep with me anymore I said lets go snuggle and she said your place or mine and I said yours is closer. We snuggled, I kissed her, told her I loved her and she was happy and content. Love is a verb, actions say far more words. I am going to try and make everyday a good day.
Lindylou don't let them get you down I know easy to say and hard to do but we have enough to deal with and don't need to get upset about people who we cannot do anything about. I have a bil that just pisses me off, his sister but virtually no contact, I realized I was spending time and energy being mad at him instead of what I should be doing which is taking care of Lisa and myself. Doesn't mean I am still not mad and upset with him, and I will let him know that at some point, but I am not going to dwell on it now because it is going to be a good day.
I, too, think that some of this painting us as the bad guy is to make other people feel better for not helping more. Or for not helping at all. With DH's family, I've felt for a long time that they didn't like me--so why would they want to help me? (And I know that they would see it as helping me, and not as helping their own family member.)
What I do not understand, though, since they seem to think so little of me, is why they wouldn't want to check periodically to see if their family member is being taken care of. I could have DH chained up in a shed out in the back yard for all they know--or care.
Lindylou, The job of a spousal caregiver is too hard and requires too many of our resources for us to be distracted or undermined by other people's trivial gripes. It's as though we are the captain of a ship that has sprung a leak in the middle of the ocean and one of our crew wants us to interrupt our work so they can complain about why we did not say, "Thank you," for something they did. At least that's the way I see it.
Now is the time for other people to cut us some slack, to offer us a kind word or a full body hug. It is not a time to complain about us, to expect us to "give back" or to demand anything from us expect civil discourse. The fact that some people don't understand this (or refuse to accept it) does not change the reality of the situation. I think you're right to ignore this crowd. In fact, I don't see that you have much choice if you are going to survive.
I was very hurt and angry over the non actions of a very close relative of mine, who happened to be a friend of Sid's since they were children. Here is what I decided to do about it. Nothing. It was hurting me, and not affecting him in the least. Instead of wasting my energy on anger and resentment towards him, I decided to focus on those many friends and relatives who offered emotional, physical, and financial help from beginning to end. I expend my energy being grateful and thankful every single day for their unwavering support and love. It feels better than seething with resentment and anger. I am totally shocked that I have managed to do that, but the Alzheimer journey changed me in many ways - certainly has made me calmer and less stressed about stuff that would have sent me into a tizzy before.
When dealing with Alzheimer's Disease of a loved one, you have to choose your battles to save your energy. Out of a need for our own survival, we have to cut off toxic relationships that drain our energy.
Lindylou - look for an email from me in the next day or two.
Lindylou, I agree with all the others. You cannot let these people get to you. You have every right to protect yourself and your partner from these toxic people. You will never be able to control what they do or say, or don't do or don't say. You can only control how you respond. I think it was a good move on your part to discontinue responding to anything on Facebook or text messages. I agree with others that you should surround yourself and only spend time with people who are supportive of you and your partner and what you are going through. There is too much you are dealing with on a daily basis to have to deal with all of that. And if any of them don't like it, well that's too bad. From what you've stated, it appears they have made conscious decisions as to why they can't or won't help. And as you say, they don't seem to care. You do what you feel is the best decision for both of you. You must take care of yourself too. I had to make the decision to place my DH as it became too much for me working full time and with a child at home. I looked at it as no one really knew what was going on in my house except me and my son because we dealt with it everyday. I stayed away from people who I felt were not supportive, did not correspond with relatives who made no attempt to find out how things were going. Right, wrong or indifferent, I had enough on my plate and did not need to take on the responsibility of letting everyone know what was going on. If they truly cared, they could reach out to me. It definitely hurt but I had to learn to let it go and focus on what was good and what I could control.
Hang in there. We know how hard it is (and continues to be). You have support here.
I guess it was the corn husks in the toilet that made me lose it. I used some profanity (which I usually avoid in all circumstances) and then asked my partner to just give me five minutes to fix the problem and get over being angry. She hovered just outside the bathroom. I fixed the problem. The toilet still flushes, thank goodness. I had to get over being angry quickly or she would have run away from home and I would have had to run away with her. So I hugged her and told her I was sorry I got angry. She told me she is doing the best she can. And I said “I know it. All your life you have done the best you could. I never doubt it. I do the best I can too.” We hugged.
A few minutes later she came up to me and said “I know who you are”. And then she was silent. This is not a quiz, I remind myself. I answered for her, “I am the one who loves you.” “Yes, yes”, she said excited. “And, and,” she continued. I waited. Would she come up with my name? Its been a long time since she’s used my name in any context. At least a few months now. “And and” she said, “you are the one who takes care of me.” She was so delighted that she got it right that she clapped her hands. I smiled at her. She was right, I am the one who takes care of her. That has become my identity. I refuse to become grim about this fact. But it is really hard not to sometimes.
This is the first day of the rest of my life, after all. (Thanks, Rona) I will do my best to rejoice and be glad in it. Who wants to be grim all the time, after all?
You're a good person Lindylou. There was a period where Dianne hovered and did things like stand outside the room around the corner or at the bottom of the stairs (this is a side split) just out of sight day after day after day. It drove me nuts.
Only now do I understand that I think she was afraid to be alone but also afraid to be with the stranger upstairs or in the other room. They can't win because if they try then it all gets weird right in front of them and when they don't it's still weird inside being all alone.
I was mean to her at times and I said things at times and that horrified me for a long time afterwards until I was willing to really look at it and came to understand what you just said that we were all doing the best we could.
I'll say it this way. In an egalitarian world where when you gave of yourself you got poker chips and where you reacted poker chips were taken away, then afterwards your house would be full of poker chips. That's not how it feels at all and there an Einstein 'thought experiment' can help some. It's not you and her that have this. It's close friends of yours and everything you two are going through - you are watching them go through instead. Now judge them.
I doubt any one of you can do that objectively no matter how smart or intuitive you may be. I doubt that matters when we go through this. It will later I'm certain and I suspect, Lindylou, that you are going to understand afterwards.
Once when asked who I was, by the hospice nurse. DH said "the nice lady". I was just glad he did not say "the b**ch". There were times I just lost it with him. And I think somewhere in him he knew I was doing the best I could.
I remember so well how DH's shadowing and lurking would drive me crazy - I would lose it with him and then the cycle of feeling guilty, apologizing and vowing not to yell again would begin. It was especially bad through the night if I would get up to go to the bathroom and he would be standing there, looming silently in the dark, when I opened the door.......I'd nearly jump out of my skin! Anyway, today would have been his 67th birthday so I'm off to the cemetery. I was able to have a memorial bench installed near his grave marker and it's a beautiful day so I will take some coffee, sit awhile and have a visit. I don't know if it's because today is his birthday but the melody of the song 'Memory' from the musical Cats has been in my head all morning........no rhyme nor reason to any of it at all.
Wolf: "I was mean to her at times and I said things at times and that horrified me for a long time afterwards until I was willing to really look at it and came to understand what you just said that we were all doing the best we could."
This is me, too, and I'm still coming to terms with my past behavior and limitations. I talked with my sister-in-law recently, and she told me that in conversations over the years she'd had with my wife, my wife had sometimes talked about having a good life, being lucky enough to have done a lot of the things she wanted to do. That helps to know.
And I'll also agree: Lindylou, you're a good person.
So Wolf, you sent me off to the dictionary which did not help me a lot.
Jibber jabber, it said, is like gibberish. Which when you hear the conversation, in English, in my car every afternoon, gibberish it is. The tone and structure sound right, but whatever are these two talking about? Neither of them could tell you, neither of them knows. A question is asked about what I do not know. I answer with something that sounds like agreement - “we could try that - thank you for bringing this to my attention - perhaps we can work on it (whatever it is) after we get home”.
Jibber-jabber, according to the dictionary, is also excited and fast talking. And is perhaps what my family meant when they told the five of us, years and years ago, to take our jibber-jabber outdoors. But we learn our vocabulary without reading the dictionary, so this beautiful word took on a different context to me.
Jibber-jabber to me: Light and casual and frequently inconsequential conversation between two people. The greater world will perhaps not be greatly moved. But much may be gained nevertheless.
Company is needed. Shared silence would be too mournful and sad. The tears just behind the eyes would come forward.The tightness in the throat would become more taut and unbearable. We say yes to enough tears and sadness as it is. So we jibber-jabber instead.
Talking about AD can be too tense and painful, and off putting for those who are our friends. They care. They show it by being there. They have eyes that see, hearts that care. And while we share a little of the pain we are in the midst of, we jibber-jabber more.
I learn about my friend’s trip to Ireland. She learns about the Fairy Gardens that are on display here in May. We jibber-jabber about stuffed pumpkins, and the upcoming holidays. And when we hug goodbye, yes the tears come to the front a little. But we’ve had our moments to laugh a little together.