Least I say it has not been a good day. Went to see Lisa this morning and visit ok but continual you never see me, why don't you stay, why can't we just be together, by the time I left I was feeling beaten up. I think I have talked about my sil before but anyways she came to visit Lisa yesterday, 3rd time in 10 weeks, her brother once, visit went well. This. Morning I got an email saying she bought some puzzles, crayons and stained glass Stencils and left them for her. I emailed back and said I know you mean well but Lisa is beyond that and it is just another frustration and she doesn't want to do it. Also said talk to staff if you think I am not right. I talked to them and they felt the same way and suggested we remove them from the room as things are getting broken, missing and who knows, put them in common area for her.
So when I left I phoned sil and could tell by cool reception that this was not good. Let me say that I am very diplomatic I think one of my strong points. In fairness she has not been well so visiting or even talking on the phone has been a problem. Anyways she says she has wanted to talk to me for a long time as i cannot remember the exact words, I have been aggressive, dismissive or something like that when it comes to suggestions they have made about Lisa's care. They don't make suggestions it is more like she needs this have you done that. I have told her in the past that her approach has made me feel like she was guilting me that I am not doing everything I can. She said she didn't know What role I want them to play in her care and I just said I would like them to be there for her, boots on the ground. They have never been. Granted sil has been there prior for me on the phone but no real help.
She happened to be there day of the care conference and she asked to attend which was fine. I said to her it went well then her comment today was until the conversation in the elevator. She said to me that Lisa always says she cannot hear and cannot see she needs to have a hearing and vision test. I responded with it is more of a processing problem. She viewed that as aggressive and not listening.she said to me that her friend who was there felt she had to leave as my sil was under attack by me what the heck is that. Under attack beyond me some sort of game playing going on.
I told her my frustration is that they are not there they do not know what has or has not been done or what Lisa is capable of and then just come in and say what should be done. Her response, so since I am not there all the time I cannot be part of Lisa's care. I said no what I am saying is how you are making me feel.
An interaction I did not need and really just cannot comprehend. Left it that we both have issues here so we need to sit down and deal with them I for the life of me don't get it. I broke down today then said I don!t need this. I came home went for a good hour and half hike, cut the grass now I am having a g&t and am going to make dinner. I feel very alone tonight. Don't know if this post made sense but I have a feeling you get it.
Rona, I've found that those who contribute the least can be the most critical and cruel. Maybe it makes them feel more adequate. If possible, recognize that they come from a toxic place that has nothing to do with you. You are a vulnerable target, and they think they can get away with it. Which is a classical description of a bully. I've found it best not try to reason with them or respond. Remove yourself. Think of them as being more handicapped than most of the rest of us. Protect yourself and stay healthy and whole.
Rona.......... In addition the problems taking care of your Dear Lisa you are facing a common problem that others here have had to deal with, I realize that I was fortunate that I had none of these relative problems when I was going through this. However, there were times when one of my daughters was quite rude to the staff at the nursing home over trivia things, and I did my best to smooth things over.
I think you are too sensitive to your sil's feelings. I know you don't want to hurt her but you are doing your best under very difficult circumstances and that's all anyone can do and you should give yourself a big pat on the back for the effort you have made to be nice to her.
You are a very strong and caring person, Rona. Be proud of yourself for the way you are handling this.
Rona you are doing a great job acting for Lisa, don't let anyone say different or make you feel you are not. If you don't live with the person with dementia then you can't possibly know what they are or are not capable of. It sounds like your sil would like more control? Like all of it.
What role they are to play? This is not a game where we take roles! It is serious work! If anyone want to be involved then they have to realize this is a partnership of care, and it is hard serious work.
I find that even the staff at DH's LTC are are having problems with his abilities. He come to me not to them and then I have to tell them then he often says " I'm just fine." Have you tried just letting your sil go and visit and get a good taste of what is really happening to Lisa? Maybe having her visit while you take a much needed break? Asked her to go and help Lisa use the items she brought in? Spend the afternoon working on these things with her sister? I don't know what it is like there but here the staff will only talk to me. If his need at that time is t paper or needs them to check him that is fine but not any discussion about his health or care. You must be in need of a break right now? Maybe treat yourself to a good hike somewhere other then home. Lisa will be fine. I think it was you, when I was going through a particularly bad time, that told me to take a break and take care of me. WELL??
I really have no experience with something like this, I can only imagine what it must feel like being battered from all sides. I wish you additional strength & calm in dealing with this.
Rona, I can see why you were upset. I like Jazzy's advice. Let your sister-in-law visit and help Lisa play with the stuff she brought. If it works out, fine. In not she will have learned her lesson about Lisa's abilities in the same way we all learn - by hard experience.
If it were me, I would not sit down with this woman and deal with the issues. Your job is not to educate Lisa's family and it is a lost cause anyway. You are never going to win a debate about what kinds of amusements are appropriate for Lisa. Can't you just agree to disagree and let your sister-in-law visit Lisa on her own and bring what she likes? If the stuff is not appropriate you can hide it or throw it out after she leaves, just as you would a piece of junk that some odd person gave you for Christmas.
Thanks everyone Myrtle it is just not that easy it is not about what she brought but the whole issue of her saying she cannot talk to me because I am aggressive and not listening. Typical no idea what is going on but full of advice on what needs to be done. No asking just telling. Some of her suggestions in past I have acted on others no. Again I have told her it feels like she is guilting me that I am not doing what needs to be done. Very frustrating and upsetting and Now I am spending my energy dealing with this instead of what i should be doing.
As Mary said bullying behaviour for what purpose? Brother in law goes right by our house all the time I bet I count on one hand the number of times he stopped in the last year and he won't talk on the phone. I have never pressured them to be involved but I have been saddened by there lack of it. There only involvement has been to tell me what to do. It is Lisa's only brother Immediate relative. They actually have never been close and she had a lot of stories of how he had not been nice in past .
I will get over this and deal with it but when you are vulnerable it just knocks you back a bit. It is funny I don't feel really mad I sort of expected this from them. I don't feel really hurt by her comments because they are just so bizarre, just sad and beaten up like the hole got a little deeper.
I will Not let them bully me as a secondary school principal I dealt with a lot of bullies both kids and adults. I am strong they cannot hurt me I am looking forward and I see it is bright it is their loss. I really don't want much to do with them but For Lisa I want them to be there for her but that is it? On ward and upward.
Lisa probably took their measure long ago and accepted it. They are what they are. Yes, eyes away and onward and upward. Somewhere I read a report about bullies, who were asked why they did it. The answer was, "Because I could get away with it." I like Myrtle's response. I think it will give you most peace of mind. Your number one focus has to be on you, so that you can continue to ca Myrtle, Shakespeare probably has something to say about this kind of situation: words that come to mind are "babbling fools, idiots, bats, toads, crack of thunder, a pox on them, goodness will be restored to the land"? I'm mixing up my plays badly.
Rona,This stuff with family is such a complicated thing. In our hearts we want our loved ones to have the love of their family that they enjoyed before AD. But family is either too fearful, too busy, or too self-centered, to want to engage in any meaningful way. And then they choose to blame us for their discomfort. Wouldn't you think they'd want to provide not only some gentle love to their family member, but that they'd also want to reach out to give love and support to the in-law who is giving care? I really believe sometimes family members want us to be the ones to support and care for them in the decisions they make.
I really felt that I had merged with my partner's family when I married. Wrong. Wrong. Wrong. My family, however, has embraced me and my partner, including us in weekly outings and meals, giving hugs, and listening to conversation and chatter that they cannot at all understand.
I have decided in my partner's family case, we will continue our monthly lunches with my partner's mother. I don't want to take her mother away from her by not continuing this five year tradition. Her mother is 85 and we drive up to NH and take her out. I redirect conversation if she gets too negative. I text her son when my partner wants to talk to him. He can call her/us if he chooses. He usually fails to call back, but she does not remember so it is not an issue I have to deal with. And if any family initiate contact with invitations or for information, we will respond with appropriate delight. If family calls with negativity, I will say I don't have time or energy for this and will hang up. Which will be true. This care giving is exhausting.
I will, though let family know when I take my different weeks of respite and let them know where she will be while I am gone. In an emergency I will also call them with information.
Thanks to others on this website I have let go of any expectations of help or support from partner's family. It was my own aggravation at them that was burdening me the most. At least, I'm not letting it bother me right now. This is hard stuff.
My abrupt departure on post above was due to a message on the screen that I had been hit by the tapworm virus (I was looking something up on Google at the time.) I have 5 more hours of scanning to go to determine how many places I was hit. Lucky for me, my computer expert was available and could access my computer.
It's too bad some in-laws are trolls. And it's too bad that most family and friends don't have the emotional depth to understand how vulnerable caregivers become while their deepest meanings in life are being ripped to shreds.
The most hurtful part is that at the very time we are in such need to even talk to anyone, the only sound strategy is to not speak of our own needs or vulnerability because the other parties are almost certainly a million miles out of their comfort zone standing this close to Alzheimer's.
No one ever means to do anything - just ask them or anyone anywhere, because that story is always the same.
My in-laws were reasonable people that could speak in whole sentences. But, like all the other groups, once my wife showed how messed up and not remotely like herself she was now, they became weird. For example the NH knew I had new stretch pants, tops, and pajamas at home for when they felt she needed them, but somehow I needed to be told by email that they brought her new clothes she suddenly was short of - and by that, which I hadn't provided. At the same time it was right to stop including me when they got together which they also updated me on in emails.
It has taken a long time where my in-laws contributed their share to the hurts I felt I endured, to come to this place where I'm smiling as I type. I haven't heard from any of them since my wife passed and the real truth is that's fine with me. I'm lonely, but not for my in-laws.
If anyone were to ask me, I believe that in that time where our spouse is in a nursing home or we are coming to understand more deeply how far away our spouse is becoming, we would do well to understand that we are in a transition to ourselves alone, and in that what matters is making that transition.
The hard and cruel facts are that we are tending a fatal illness in our loved one which guarantees two things: you are very stressed and you have to survive this. Most caregivers agree on the second but are wildly wrong about how stressed they are. Change that to 'under duress they are' if you like.
Every little thing you do and every little step you take towards accepting the transition will play a role in your future. I absolutely guarantee that.
In Rona's case one step may be in coming to an understanding that he is diplomatic and stressed and his in-law is not and is stressed. Don't try and show them. Accept their needs which are harmless and save the confrontation stress. Nod and remind yourself ultimately you are in control not them.
In Jazzy's case I would just keep listening to yourself. In my opinion you're becoming self reliant before our eyes. Sorry kiddo. I know it really hurts. Lindylou sounds strong but she hurts just as much. And RSA is cerebral and he hurts just as much too. Right Myrtle?
Wolf, I woke up this morning to a message on the computer screen that there were 43 files (?) affected(?) and repaired (?) — I'm not sure of my terminology here. I have a friend who received a similar message not long ago, and when she responded, found herself talking to someone in India for four hours. She was just about talked into $500.00 of repair. Somehow she got our of the mess. She's no dummy, either, but she said the whole scam was so believable, and she was distraught at the time.
The rule is we never respond to any computer request to phone or email or click on any external action. If you're not sure, pull the electric plug out from either the wall or the back of the computer and stick it back in. Your computer may ask if it should come up normally or it may just come up. It's the same as a power failure.
If you log back in and that message comes up again then the computer is certainly infected. Most people have an anti virus program and most of those have frequent updates on new viruses. Frequently running a full system scan detects and often removes found viruses and reports whether it found anything it couldn't remove.
Your anti virus program may well have an icon on your desktop. Double clicking that will bring up it's menu where it's likely that a 'scan for viruses' option exists. A full system scan is recommended which will occupy the computer for a while so run it before you make dinner or something. It's the report of the results that would show whether the scan was able to detect something it couldn't fix or, ideally, that it fixed what it found.
Thanks, Wolf. Appreciate your help. I have had a Norton antivirus program, but Ian at Acculogic Technologies used Sophus, and it's free. The final message from Sophus is; "no files with detections. 51 issues found." The Sophus icon remains on the computer. I'm now going out grocery shopping, to the library to pick up a hold (a memoir by poet Stephen Spencer's son), to the Senior's Centre for lunch and then for a walk.
This is for Myrtle because I know she likes poetry.
The Truly Great - Poem by Stephen Spender I think continually of those who were truly great. Who, from the womb, remembered the soul's history Through corridors of light, where the hours are suns, Endless and singing. Whose lovely ambition Was that their lips, still touched with fire, Should tell of the Spirit, clothed from head to foot in song. And who hoarded from the Spring branches The desires falling across their bodies like blossoms.
What is precious, is never to forget The essential delight of the blood drawn from ageless springs Breaking through rocks in worlds before our earth. Never to deny its pleasure in the morning simple light Nor its grave evening demand for love. Never to allow gradually the traffic to smother With noise and fog, the flowering of the spirit.
Near the snow, near the sun, in the highest fields, See how these names are fêted by the waving grass And by the streamers of white cloud And whispers of wind in the listening sky. The names of those who in their lives fought for life, Who wore at their hearts the fire's centre. Born of the sun, they travelled a short while toward the sun And left the vivid air signed with their honour. Stephen Spender
What a beautiful poem, Mary. Thank you. I have been thinking of some people who might be in this category.
Wolf, I agree that cerebral people suffer as much as others. But wait! Has that hypothesis been supported by a double-blind controlled study? BTW, on the subject of how we think, I saw a cartoon today that showed a customer in a diner hailing a waitress, saying, "Miss, there's a historical inaccuracy in my placemat."
Will post tomorrow on another thread. As my grandmother used to say, Good night shirt.
I guess I am a little cerebral--but I've found that thinking about things doesn't always lead to conclusions. I've had only support from my family and my wife's family, so I can't comment on Rona's situation, but at the risk of derailing the conversation here I'll mention a few issues I've thought about, in talking with others and realizing that they don't understand dementia:
What does it mean for a person to be the same person they used to be? We go to sleep at night and are gone from the world. The next morning we're slightly different from yesterday morning, because of yesterday's experiences, and yet everyone recognizes us, as we do ourselves, as being the same. Even if the difference is decades, we're the same person. And yet I believe without any doubt that my wife is a different person than she was five years ago. I've read philosophy papers that discuss the physical, psychological, and social continuity of self and personhood, and it's very complex; not much help there.
How is being married to someone with severe dementia different from being married to someone with cancer or some other fatal illness? Some people (including me, at one time!) think of it all as the "in sickness and in heath" part of the marriage vows. But here's a thought experiment: There are polls that ask married people, "Suppose you'd never met and married your spouse--now you meet them and get to know them. Would you get married?" Issues of love and compatibility aside, my wife isn't able to give consent even to small things, which raises legal and ethical flags in this imaginary scenario. That's a huge difference from other illnesses that don't affect the mind.
How does a marriage change with dementia in the picture? I've told people that my marriage has changed from a partnership into a guardianship, or so it seems to me. I'm still adjusting to that, having to make what used to be important shared decisions by myself now. There might be similarities to raising children, but I don't know for sure, not having kids. Some days I feel like the single parent of a child with a terminal illness, with the extra constraint that most of society would disapprove if I even think about life afterwards.
I hate to let things fester so what is the important thing here, to me it is having in in laws still in Lisa's life it is not about my feelings no one has to be right or win in a situation like this. If feelings are there, guilt aggression, wether it has been intentional or not they are real to that person so they exist. For my part I have no problem Backing up, if she feels I have not listened and have been aggressive then I told her on the phone and will tell her again that was not my intent and I am sorry if I made her feel that way. I know there lack of involvement and the approach of just telling me what has to be done has caused me to resent the comments and possibly that resentment came through more than I realized. I have told her in the past how her comments come across as guilting making me feel I am. Not doing everything I can, have also told them I am disappointed that bil is just non existant, never calls or visits. So by doing so I can feel good about myself and know that I have done what I could do to rectify things. However don't really feel they will get how their approach has affected me but so be it. At this point it is about Lisa soon she will not recognize any of us that time is close. If they cannot get over this then it is their problem I have done what I could and frankly after this is over I doubt if they will be involved in my life and that is just fine.
Which brings up another point I have been wrestling with. To remember or not to remember which is right or best? The staff tell me it will be easier for her and for me when she no longer remembers the past but can settle in and be comfortable where she is. Yet I keep going, the dog goes at times pictures in the room are of people she knew. All triggers for what was. Every visit is hard on me and on her because she remembers she had a home, she wants it to be like it was, she gets upset when I leave. Why it seems like we are just reliving the pain everyday. I want her to be happy and not afraid, as harsh as this sounds at times I want her to forget.
Isn't society like voters? Their votes do count just like mine but that doesn't mean anyone is informed.
Strip this experience to it's bones and we become those guardians where society may see us as holding to our vows or facing a moral dilemma where the truth is almost no one leaves them because of the wrenching extent of such a despicable choice. Caregivers are trapped.
I don't know what would happen if I met Dianne 'recently'. She was still the type of woman I like and we would likely have been just as compatible in our personalities and outlooks. I would answer this way: if I saw Dianne in a sea of women she may well still stand out as the two or three I noticed. How she would feel about me in that same experiment, I can't say.
Even though my only alternative was to change my name and move to Des Moines, I still know that I never needed such fences. Dianne earned it with me, she was my life partner, thirdly she was my wife, fourthly I took a public vow (made a commitment). I loved her deeply and yet when I put her in the home, I also told myself I could have another woman now if that mattered a great deal to me. It didn't, but if I had come to understand I need a woman with me I promise you I would have pursued that.
Morality is an interesting topic. In situations like this it can be very complicated with all positions having some form of moral high ground. I was long the guardian of Dianne when she went in where EOAD ran fast with us. I knew that without doubt and I knew that it was only time that had to catch up to create facts which were already certain. In such a thing how do we judge the extent to which being true to ourselves is right or wrong?
Before we answer, place the reality that we are already not true to ourselves nor the relationship we now guard because most criteria that defined those has ceased to exist. We are not normal human beings during this time which we could immediately know if we did a second thought experiment. Take you from ten years ago and have that you do a triage of you now. Our morality issues center around the luxuries of our own actions but easily the second most serious thing about this is what cruelty this is to you - the care giver.
It's all very complicated where I would say one guiding light is that your life matters and that is something all spouses would agree to if they could. I would have loved to have balanced that better but I was up to my cowlick just surviving.
Rona, she will get there. Her general disposition will likely remain while her world transforms more and more into the moment. Try and remember how you sounded at the beginning of this and how you sound now - which is that it's very hard on you but you ARE working your way through this difficult thing. Wanting her to forget what can't be good is merciful and not, in my opinion, cruel.
If I had it to do over would I marry my husband - no. If I did in hindsight I would have found the courage to leave after his affair which he was never sorry for.
Reading all the problems with family, 99% of the time I am glad I don't have to deal with it. For all my adult life seems the unspoken rule has been: you are welcome to visit us anytime but don't expect us to visit you. In 45 years his brother has never come to visit even though he was close a few times while on vacation (which he never let us know). His parents did make the trek from the east coast to west coast after we adopted the kids. His sister never came to visit us either once we moved away after 1 1/2 years of living near them. My family: my mother wouldn't because I was the odd one out but told my kids she would not because I wouldn't let her smoke in my house which hurt my kids a lot since they knew she would go visit her other grandkids often; the rest only because they were going by - never purposely come to visit just us.No phone calls to just chat. I actually have very little in common with any of my 6 siblings. My kids: daughter moved to TN 9 years ago and has made no attempt to visit (of course she can't afford it since she doesn't work); son has visited twice in the last 3 years only because his job took him by, not because he wanted to see us.
I don't expect anything from family. They never call or email to ask for updates. As of now, when he dies I will be in no hurry to let anyone know.
Rona, if it were me I would seriously consider only doing generic updates via email. Do not set yourself up for disappointment and emotional pain by trying to reason with them. Sometimes I think our healthy families have their 'reason' button broken worse than our spouse. It is called setting boundaries. When people hurt us we need to set boundaries to protect us. There is nothing wrong with doing that.
My wife's family has always been supportive. But there has always been tension between my wife and her youngest sister. Her sister told me that she will help (and she does) but she cannot get over stuff that my wife did to her growing up. Knowing my wife I believe my SIL.
I did take a vacation with my wife's family this summer. It was very nice but there was less interaction between my self and my son with the rest of the family. Until the last day I did feel somewhat isolated. But you have family dynamics (my two SILs have always been close) and perhaps they wanted to give me and my son an opportunity to spend a lot of time together.
A bigger issue has been my wife's friends. Some have been there for her (one friend writes to her most weeks, snail mail since my wife no longer users a computer nor answers the phone) while others have been a disappointment. For all of them visiting my wife is a long trip, often 3.5 hours each way. Some of them have major problems of their own. But some visit on occasion. I realized that I needed a better way to keep them in the loop. I set up a page for my wife on caringbridge.com and checked my wife's address book and invited friends and family. It looks like all have visited the site and I heard from some people whom I had not heard from in a long time. So this might motivate some people to get more involved. It also saves me a lot of time in telling multiple people the same thing over and over. I have been thanks by some for keeping them up to date. Too early to say if this will motivate some of them to take action. And some of her friends are contacting others to her caringbridge.com page.