My mom is the sweetest person I've ever known and she's driving me crazy. She wants to go "home" and she's still living in the house she's lived in for the past 23 years. She keeps asking for her father and mother and they died over 40 years ago. Today she thought someone was coming to pick her up to go shopping she doesn't know who but she's still waiting for whoever it is to show up and it's been 4 hours now. She wouldn't have dinner because they are going to show up any minute. I'm so frustrated and sad and so I veer between snapping at her and crying. Her companions children came and moved him to a nursing home in another state over a year ago and she is still looking for him. He of course has never called since then. My siblings do nothing to help me out, except tell me how grateful they are for what I do. I was able to have a respite for a week at the end of July but the place where she stayed was very disappointing and I would not want to leave her there or anywhere else like that again. It looked really nice but they were not paying attention and she lost more than 2/3rds of what she took in with her and thats just one of my many complaints. I just had to get this out and I already feel better. Thanks for being there.

Sara, MY husbands family has never come to visit or lend a helping hand.Some with those same old reasons.I do not think I could stand to see him.
But they have all the answers when sitting in the compfort of their home where things are witin their control.Wll, My sister in law made she short monthly call to tell me my husbands brother in law has the beginning of dementia.The wife, hubbies sister is falling a part at the seems.One reason is he took care of everything.Paid the bills did everything.Now she has to begin being more responsible.
I feel bad for him because he is a gem of a person.Now we will see if they are able to face all the stress when it is in their home.
I do know she will lean on her daughters as they have all made her the helpless one and she loved the role.
Many have reasons for not being able to help.Then you have those who cannot be bothered but will find time to be at the reading of a will, if one is there.
I call these people self centered.The world revolves around them and what they want .
If possible find away to get help so you can get out of the house as much as possible.You need distance from the situation once in a while.
If the family cannot help, tell them you will accept donations to be able to hire someone to give you free time

Sarabugs, I can relate to what you are dealing with.My poor mother had the same symptoms.Also she was in a facility that was worst then spending time in an out house.
Many times the right meds will control her asking to go home.The place she knows as home is not what we think.It is a place where they felf safe and familiar.With dementia what was all this is no longer what they see today.

Dear Sara,

There is really nothing I can say that other's have already.

If it comes to be that you are the sole CG, I understand the stress and strain. If you have to, simply go into your bedroom/closet/basement/, where ever and scream into your pillow until no sound will come out of your mouth! Pillows sometimes seem to listen closer than family or the best of supportive freinds! It is also a stress release, terrible when it comes down to this, but a little help none the less!

Thinking of you honey, keep coming back, we are all here to listen and help with our own time worn suggestions!

Mom's Buddy I know you're right about why they don't call or visit often. I am going to ask for cards and pictures from her grand and great grand children. I do keep in touch with my siblings and so I know they are busy with their own lives and families and they are as supportive as they can be. Thanks for your suggestions. It makes such a difference and helps so much having someone to talk to.

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My family is comfortable telling me they just couldn't do what I'm doing they "haven't got what it takes". They all hurt and disappoint me by not visiting or calling her often.

Sara, this is very common and familiar to most of us. I think sometimes we do not realize that others really are NOT like us... no negative aspersions intended. Many folks are simply not cut out for this kind of work - and it IS work! I don't resent them because I know that it takes all kinds to make a world go 'round. I also understand the dearth of telephone calls and visits... some folks have a good handle on the art of conversation, even with people who have nothing to talk about or can't remember anything to talk about or talk about stuff that is long gone or was never really there... Most folks don't have that ability. They do think of others but when it comes to action, their own fears prevent them from taking action ("what would we DO if we visited?" "what does one talk about?", etc.) Their own internal dialogs prevent them from taking action because they don't realize that just showing up is a blessing. They have "normal" lives with social and family events and somehow penciling in a visit to a waning elderly relative doesn't rise to the top of their list. They are more attuned to the needs of their children, jobs, homes and other aspects of normal daily life. It IS a lot to ask folks to drive a long way, visit for an hour or so and drive all the way back. For the ones who do that, many, many blessings to them for taking the time out of their lives. For the ones who don't, all I can say is that I understand. Some of our siblings, cousins and other relatives cannot cope with what they see when they arrive... I understand that, too. Many people are quite horrified at the changes in our loved ones. It upsets them, particularly if that person was one of the "rocks" in their lives. It's hard to see our once strong, dynamic loved ones reduced to frail, fragile people with little mental capacity. The guilt they feel for not being more attentive seals the deal - they simply cannot cope with the whole thing!

It's hard not to feel frazzled and resentful and hurt when we feel like we are watching the lives of others go by and no one calls or writes. We are tethered to our loved ones and cannot leave to attend normal social or even family events, so we DO have periods of time when we chafe at the ties that bind us and hate anyone who is doing anything else! Sometimes when family DOES call, the load of guilt that WE lay on them overwhelms them and makes them less likely to call in the future... the whole thing becomes a vicious circle.

There ARE things that we can do to encourage others to be more attentive... we can stay in touch with them even if they do not call or write back. We can request postcards and short letters or greeting cards for our loved ones. We can solicit hand-drawn pictures from grand and great-grandchildren. We can offer our understanding to OTHERS in their stuggles to stay in touch with us and our loved ones. We can call and just have normal conversations with them "How's the spouse, how're the kids? What are y'all up to these days? Did you ever get your garden put in?" We DO get all wrapped up in what we are doing and frequently neglect others who may interpret this as not caring... Communicating with our siblings and relatives doesn't ALWAYS have to center around our afflicted loved ones! Sometimes we have become quite self-centered in our own lives as caregivers and forget to take an interest in others!

The dynamics of the lack of communication are not totally one-sided... sometimes we DO bear a responsibility that we need to address. We get so wrapped up with caregiving, we forget how to be "there" for a sibling who needs to talk about a problem they might be having, who may be afraid to call because they don't want to "bother" us with their difficulties. There are MANY reasons for the communication vacuum in which many of us find ourselves and not ALL if it is the "fault" of others - sometimes we drive them away by making them feel guilty or unwelcome or selfish.

There was an old song in the 70s whose refrain was...
"Darlin' if you want me to be
closer to you
get closer to me"

Instead of allowing ourselves to play the "blame game," perhaps we should be reaching out a little with love in our hearts... There is a LOT going on in everyone's lives (including our own!) besides eldercare...

Thank you so much for your responses. It's so good to have people who really understand to go to when I'm losing it. My mom sees her PCP regularly because she is part of PACE a program of all inclusive care for the elderly. It is an excellent support for people who would otherwise have to live in a nusing home. They have chapters nationwide I highly recomend it. She takes Aricept and Namenda along with Gabopentin for her neuropathy and Celexa and Tylenol. Last October we got a wonderful miniature poodle she named him Danny Boy and sings that song to him alot. He brings us all , well except for a few of the cats , alot of joy and amusement. My family is comfortable telling me they just couldn't do what I'm doing they "haven't got what it takes". They all hurt and disappoint me by not visiting or calling her often. PACE pays for respite and they will provide about 4 weeks a year at a nursing home. I have found that the therapeutic lying does help. It's just so frustating sometimes when she gets stuck on one idea. "Home" is her childhood home which of course is far away and long gone. In her mind her parents are still alive and expecting her. Sometimes we get in the car to go there and we just drive around in a big circle and by the time we come back around this way she's satisfied to come back here. Alot of the time she doesn't recall that I am her daughter. She asks me "where is Sara?" When I said she lost stuff I meant clothing. The facility didn't tell me to label all of her things and stupidly I prepared for her "vacation" by getting her a new nightgown and some new clothes and took a raincoat which she never used but it got lost along with alot of her other clothes. She has moments of lucidity and then slips right back into confusion. I am glad I have this time with her because through it all she remains the easy going funny gracious person I have always known and adored. It's just sometimes it is so hard to witness her lost and alone in an awful world of confusion and unable to understand what has happened to all the people she loves, where have they gone, why they don't call? I thank you all once again for your support and suggestions. It's made a big difference having you here.

Sara, MB and Hap and BG, have all offered real life experience responses to what you face now. I can't really add to what they have said. I do have a question about the respite situation, though.

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she lost more than 2/3rds of what she took in with her

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I jump to conclusions here and don't want to. Do you mean her things, or her mental abilities? Any change of environment or routine is risky for our LOs, but you must have time off. It is essential, if you are going to keep up the load. Finding a way to accomplish this with minimal risk is no easy task, and it seems like it never works out right. Still you must have time off, or you can't continue, on this path.

I am saying this as much to myself as to you. Once a year for the past 3 years, I have gone out of town for 3 days to visit H's family. No cell phone contact there, It is really only 1 of my regular days with her that gets dropped and it is her regular CGs filling in, but it is a panic of over planning, over shopping, and each night, making H drive me to the top ofthe mountain range where I can get a signal to check in. Some break, huh. Don't know how.

So glad you checked in here and shared with us. You help us all by posting your problems, and getting responses that we all can read.

Well said MB!
Sara my own MIL is getting real bad now but it never ceases to amaze me how they respond to this disease at any given time.
Let me tell you a little of what we deal with here to better understand how complex this all is and how I deal with it for my own sanity.
My MIL has some pretty good days but the nights are a horror I cant tell you how many times I sit here thinking to myself how can she be so lucid and in the moment sometimes during the day but lose it all together during the evening it just doesnt make any sense at all, but I think Ive come up with an idea on the why this is...
Their tired and I mean literally dog tired after a period of wakeful hours the memory starts to degrade think about your own self here for a moment if you were doing a lot of tasks throughout the day for a period of time, now couple that together with bad sleeping patterns and you start getting what I refer to as "Rum Dumb" if you've never heard that then Loopy...Your so tired your brain is not functioning at optimal levels and your problem solving degrades to a point where you can not put, lets say 2+2 together.
With me so far Your reaction time is way off your memory is shot sometimes forgetting where you are or should be at the moment if your truly lacking sleep, which they are.
Now put that together with less brain capacity or a brain destroyed by diseases such as this and you are all over the board.
This kind of thinking helps me much Sara, it helps me detach in a way that puts more focus into the research of the disease rather than the stress of the illness thats taking away my MIL... if I dont it eats me up inside...in essence Im redirecting my own emotions and patterns of behaivor like what we do with our LO's when they are in the midst of one of these "memories".
Last month I saw who my MIL was for the first time in 26 years, you see she also suffers from other Psychosis making the woman I knew for all these years altered to begin with and not a very pleasant person to be around for any of her family it wasnt just me but I did take it personally all those years I had a sneaking suspicion but, well how do you tell your in laws and hunny Hey I think your mom/wife is a little...uh...out there....So we lived walking on eggshells around her all these years.
Now after seeing this change in her that one day I see the woman she could have been, for me it erased all the bad times up to that point. I lived within that moment for as long as I could and appreciated it. I will take that with me for the rest of my days of what a wonderful MIL I had and if Im lucky enough to see that woman again Ill be happy.
Appreciate every good moment Sara they get so few as time passes...

Hi sara! Long time no see! Glad you stopped in! Caring for people with brain destroying diseases is tough. Recently, I was thinking over this issue of dealing with dementia, and I realized that because we KNOW our parents, we have certain expectations of them - the way they relate, behave, etc. Dementia changes all the rules. We have to focus on learning about this "new" person and dealing with who they ARE rather than who they were...

Going home, there's a familiar issue. I don't know what is in your mom's question exactly, but here's what I think is going on. Because they no longer recognize and remember things well, and are frequently uprooted in space and time, they feel uncomfortable and want to go home. Home is that place where we all feel most comfortable, loved and safe. She may be in the physical home where she has lived for umpteen years, but she's adrift in her mind. She wants to go to a place where she doesn't feel the way she feels - where she feels safe and secure; where everything is "normal" again.

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I'm so frustrated and sad and so I veer between snapping at her and crying.

I DO understand, sara. The mom you have always known is gone and she is not coming back. Grieving for her is important. However, you must learn how to emotionally detach yourself from the person for whom you are caring. She can no longer help her behavior. She is anxious; she knows something's wrong but she can't remember what it is; someone has changed the rules on her; where is her husband? Where are her friends? Where is HER mommy? TRY to imagine what it's like for her, to be in the uncomfortable mental place she's in. Sure, it gets aggravating for you, but you are the ONLY tether to her memory that she has. Try to help reorient her. When that doesn't work, redirect her attention to something else. It may be time to talk with the doc about changing her meds... she sounds agitated and uncomfortable.

If she will not eat because she is waiting for someone, tell her they called and will be delayed so to go on and eat without them. When she wants to go home, ask her to tell you all about home, that you don't remember. She may be remembering her childhood home (there was a lot of life before you came along ). When she looks for her mom and dad, they have gone to visit a relative and will be back tomorrow. When she looks for her companion, he is visiting his children in another state. When she is obsessing and is upset about something, try to change the subject or turn it around to something positive. Therapeutic lying is not the same as lyin' to yo' mama. It is trying to help her feel comfortable and less agitated when she cannot remember correctly.

You gotta stop waiting for her to remember or to act "right" - it isn't going to happen. The mom you remember left the building with Elvis - sometimes there may be sightings, but only glimpses here and there. Accept the person she is NOW and try to help soothe that person - she's in an awful space. She may find interest in things now that you never knew her to like, so take some chances. She may like to color or sing or do all kinds of things she was never known to do in her adult life... Try anything and everything to keep her spirits buoyed. Remember: the damage to her brain has CHANGED her - you need to learn about this "new" person every day to help her cope with life.

And what about you? It sounds like you are grieving hard for the loss of your wonderful mom and that's something with which most of us are familiar. It hurts in a way that is so terribly frustrating and sad. There's a little girl in all of us who is horrified that she can't find her mommy any more. Kinda like the way Mom looks for home... Let it out when you can, dear, because it's too big to keep inside! But don't let that little girl blame that woman who looks like her mom for not being the mom she remembers... She cannot help what has happened to her and you can't help being sad about the whole deal. This is the place where you square your shoulders and realize that at least you have the capacity to understand what has happened to her - she does not. You will have to comfort and care for her now. The relationship has come full circle and now you are the adult taking care of her.

Hang in there, dear. And hug her every chance you get for no particular reason other than you miss her.

hi sara. i'm glad you posted. yes, you do have to let it out. what you are going through is very hard, especially when you are doing it alone. sure, your relatives are thankful for what you do but being thankful just isn't enough. what you are experiencing with your mom is a mirror image of what my lady does, looks for her mom and dad at times,wants to go home, won't go to sleep because 'they' are coming to get her, doesn't remember she was married, doesn't remember she has kids, can't leave the restaurant because the boys went to get the car and she has to wait for them, won't eat because she is saving the food for her daughter, won't get her hair cut because her mom didn't say it was alright, the list just goes on. bg is right, sometimes we just have to write the script as we go, little white lies. i told her her mom called and said go ahead and get your hair cut,or we have to get a shower if we are going to the get together, i have even gone so far as to gift wrap her clothes and tell she she got a present so she will try them on [ all this just for a shower and clean clothes.] it's called winging it. we never know where they are at any given time, it can change in a heartbeat so it is important to be flexible and listen for clues, then play along.i know it can make you cry and scream from frustration at the same time. hang in there. but do get your family to give you a break, even if it's just an evening for a burger and a movie. i am sorry her companion's family made the break so permanent. eventually she will probably stop asking for him since short term memory is usually the first to go. i have kept all of daisy's cards and letters from the 4 years i have known her and i read them to her, show her the pictures or postcards and talk about the person. sometimes she remembers the person, sometimes not but she always enjoys getting 'mail'. you will find very creative ideas to make smoother transitions but at this point i have found that the truth is useless and sometimes too much for them to process, so i go with what i know and work with it. get out photo albums and try to figure out what decade she is in at the time work with that. but also go over current pictures with her and talk about them. there is no easy way to accept seeing someone you love like this but just love her for who she is now and treasure your memories. take care and thanks for sharing with us.

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Aww Sara we all know this one maybe just maybe instead of snapping or crying around her how bout if you say Well mom their not gonna come until you finish your dinner.
Sometimes baby ya just gotta humor them its called therapeutic lying then when she starts in again ask her if she'd enjoy a little ice cream for dessert just keep redirecting her to other things until she drops what shes wanting at the moment.
When was the last time she was seen by her PCP Sara you might want to revisit her meds and change them around a bit or altogether.
Is there something she enjoys doing? Do you have pets? If not have you thought about getting one to keep her occupied maybe a small dog they work wonders with patients most of our NH's in this area employ smaller dogs to keep the residents happy and I have to say its nice to see the smiles they bring to the patients.
As for your family sweetie well this goes with the territory most times unfortunately have you asked them to give you a break at all?
INSIST this is their mom also and this is not solely YOUR responsibility