Good day all. New member here. Last week my name was flynlow. Had log in troubles so now I'm Soolow. First, thank you to all of you who welcomed me. Have not used this type of forum before, was surprised. I've been snooping the site. Very impressive. A little backround: Have been caring for my wife (early onset Alz.) seven years now. Changes are coming fast, yet she remains sweet in everyway. We've given up our life in Calif. (home,cars, lifestyle). I moved her back to the small midwestern town from which she came. 31 yrs married now and living a shockingly different life. That's the way it can go. I'm 59, Barb is an absolutey lovely 65. She has been gone from me for years now. Sad Sad.
Onto Family Apathy. Please, your comments or vents & insight welcomed. Among my most perplexing and persistent hurts is this: How is it that family on her side and mine can be so removed from our obvious tumble from life. Sadly, I've now formed life long feelings about their lack of compassion. From 5 folks on her side and 7 on my side, not even a "is there anything we can do? Dam few calls from either side, except her 91 year old mother. We have no children and have been pretty good family to all of them. It's as if their life just goes on and we're just gone. I've tried to explain our hardship, hurt, pain to them but . . . . silence. I'm totally 100% alone in this tragedy and sadly not sure if I care to return to Calif. when its over, and just as worse, I feel I'll have nothing to do with Barb's identical twin sister and the rest. I'm a pretty tough guy, but this has really has hurt me. I suppose this is simply "It is what it is."
You're advise, experience, comments please. Thanks to all in advance.
PS. to all. When I said she has been gone from me, I meant to say as my wife, in our communications, she is no longer there and has been gone a good long while. Never thought I'd be so lonely. ENd
soolow i brought another topic of apathetic family and friends here. many of us are in the same boat. i too have crossed off a lot of them due to the noncaring while DH is alive. the after will be much different with regards to family/friends. i believe its just too tense for them to associate with the disease. the usual excuse is 'its just too hard to see him/her like this'.... blah blah blah. i read into that, you are his wife/husband, its your duty to take care of them, not us. more blah blah blah!
Soolow, I am so sorry that you are feeling so alone. You described your wife so lovingly. Thank-you so much for the care that you provide for her. She is one lucky lady. I think you will find many new friends here that totally understand your situation. I am new to this site also. It is so nice to have a place to speak, vent etc. My husband is still "with" me but I see him slipping away a little more each day. It is so sad to see the fear in his eyes. He does NOT want to go! I just feel so helpless to not be able to stop it. I am a critical care nurse that knows how to save lives, but yet I can't do anything to stop the progression of this insideous disease. I think so many folks just don't know what to do or say. I think the next time her family (especially her twin) says they hate to see her that way......I would probably say "if some of you don't step up and give me an occasional break, you may see her full time because 24/7 care giving may take it's toll on me and then she won't have anyone who loves and cares for her to be able to give her the love and support that she deserves"! Have you tried adult daycare or respite care so that you can get an occasional break. You need to be able to get away and interact with other folks every now and then......to keep your sanity! I pray that things improve for you.
soolow I'm sure the majority of folks here have the same feelings an trouble with relatives helping out,my LO had four sons all married an when one was asked a few years ago by my daugther if they could give me a break the answer was if your dad doesn't think we are doing enough he should put her in a nursing home,what they considered "doing enough" was coming by once a month or so an as soon as they walked in the door the first thing out of their mouth was "we were just on our way to?" that way they could leave in a few minutes,the last time this son did anything for her he called one night an asked if she would like to go for ice cream,he picked her up drove about a half mile to Micky D's got her a dish of ice cream an left her off in the driveway an drove away,took about 10-15 minutes an they considered that"enough"kinda makes ya wanna choke someone if ya know what I mean.
Just to be clear does her family live in the hometown you moved back to? Is your family near by? Okay ...let me play Devil's advocate for one minute. My 10 year journey has shown me that many people, especially family are clueless when it comes to AD. I am going to give your relatives the benefit of doubt. May I suggest you put your thoughts in writing, and make sure each person can see who the letter is being sent to. The letter goes to all relatives. You must be clear in what it is you expect from them a visit, a phone call, a dinner brought in...do not think for one minute that they can mind read. Hopefully, her twin is paralyzed by the fear that she will get AD because I have NO other excuse for her. If your DW no longer recognizes them make sure you give them the line that "while she may not recognize you , you must not forget who she was". As mentioned above, put clearly into words how exhausting her care is and how they are needed to help out. For you are in deed concerned if anything happens to you who is to care for her. What is her Mother's relationship with the rest of the family? Why hasn't she gotten them mobilized? In the end, you will know where they all stand. And if you have the same apathy as you have now, you can write them off and plan accordingly without them. It is important for you to get respite. Get a beautiful nurse to move in with you and see if that gets any attention...just kidding! After reading your letter and hearing from others with similar stories, we need to start an AD Mafia for ungrateful, selfish, (hairy), clueless friends and relatives.
divvi, aunt b, ol don, scs, Thanks to each of you for your insight. To ol don: insensitivity runs deep, I'm sorry for you and me and others. We know better now don't we. I didn't need this to know better but now I know even better-better.
To Scs: My wife's twin still lives in Calif. I moved to Minnesota because her mother and brother were there and because I could no longer afford to live in Calif. Been there my whole life. I knew her mother was old, but in great shape. She's done all she can given her 92 years. I didn't realize there were issues with my wife and her mother. Funny how the old memories live on. That aside she's been a fairly good help but her age limits her ability to really do anything. My wife's older brother worries that my wife's occaisional needs are too much for mother. Unreal! I've given up on any help, emotional or otherwise what so ever. I had hoped that Barbara would be further along before I entroduced strangers but I simply can't keep this pace up any longer. I've contacted county services here and strangely, they my qualify Barbara for in home help. I'll stay with her and the helper each time they come until it seems rountine then I'll escape for the first time, perhaps for 3-5 hours maybe three two times a week. My Barbara is very clingy and dependant on me. I truly appreciate your insight and empathy.
To Aunt B: Well, I've you have realized from above, her sister will not be able to say "how she has changed " since they are far away and not likely to see my Barbara much. I tried to dig into her sisters non-effort with my brother in law ( her husband), inquired about the fear issue, it was unclear. I have learned from other family experieces that in the end, those non efforts can be painful to them later.
In the end, I guess we all have our limits. I now, no longer, given the above, have any time for the family at this point. I think the word "write-off" lives deep inside. I'll show a humane side to them but "see-ya" is in my heart.
To: scs, Thanks to you as well. No letters from me at this point. It's been seven years. I've spoken frankly about it to each of them. The information about Alz is out there. It's ruinous course is clear to see.
To all: I have become so hard inside. Am on anti-depressants but still severly depressed. I can describe the bottom. Sadly, I see ever better where this is headed and now I want to survive it. That want will hopefully pull me through. I'm sure oneday I'll be less hurt and hard. Your stories help me and that's why I finally came to a site like this. I am so grateful for your input. Feel free to chime in about any of this.
Last thought. My wife's changes come every several months and each time I have to make a major correction in my effort work through this. Going to be a rough winter for many of us I'm sure. End.
Appears that you are beginning to experience the acceptance part of this horrific illness....pleased to hear that you want to survive and not let AD take both of you. Your plan sounds great. I know when I first got caregivers in it was tough but the few hours a week I got to go out was a Godsend! Write off the family, do not waste your time and more importantly your precious energy expecting anything from them. That way they cannot disappoint you. Go out and make a new circle of supportive friends. Your wife is blessed to have you as her advocate. Now let others help with her care so you can better help yourself. Yes, what sustains most of us is just to survive, and dream about "life after". Be well.
My hb's family lives 3,000+ miles away. His sister is 3 years ahead of him in this disease and his brother has never been one to communicate with us low life. My family has always shown the attitude "come see us any time but do not expect us to come see you'. Help us anytime, but don't expect us to help you.''
You are in good company here since the majority are in the same situation. there are some here blessed to have great support and help from their families, but many of do not.
Soolow, I understand how you feel with regard to family and friends who do not respond or are willing to help in any way at all..I can see how you would develop hard feelings toward them. My brother felt the same things when he lost his wife 3 months ago to cancer. I fight those feelings too and the way I put it is I do not suffer fools at all anymore..be they family or folks who know the situation and don't really give a damn. For people who show the pained expression on their faces as they ask " and how is DH?" I just now cut to the chase and say " if you really want to know how he is, call him or better come for a visit". Yep I do not suffer fools on any level anymore.
Soolow, if it's any omfort to you, you are certainly not alone. My dh has 2 brothers-1 who lives 1.5 hours away and 1 who lives 3 hours away. Neither of them come to visit or invite us to their homes. They don't want to have anything to do with him. Most of the friends we've had have moved to other places in the country so we too are basically alone. I am fortunate that my sister who lives 2 hours away does what she can to help out.
I have made up my mind that since no one on his side (including nieces and nephews) stays in touch or even cares about him enough to call, should he pass away before me, I will have a private service and will not notify them that he has passed. I'm not willing to allow them to have the opportunity to "say goodbye", particularly since they didn't want anything to do with him while he's alive.
To Thine Known Self be True..... Take care of yourself first and that way you'll be in a position to take care of others. Quote from Shakespeare but how the heck do we do that. One thing in my opinion is, stop thinking people are going to help, family or friends. Those who have family or friends that help are sooooo bless, that is a gift and one I am sure if you have you cherish. But for the rest of us, once you start keeping your expectations of these people low you can start to take back some of your energy because your not wasting it on them and what they are not doing. Find something you enjoy for yourself, sounds like Joan's is knitting, me an hour walk, maybe someone else may like TV, reading ......doesn't matter find something you like and work it in ......at first it will be hard to carve the time but like many have said, clean towels don't have to be folded to be used (laundry baskets in my house means closet) And I agree with LFL when the time comes ONLY those who were there for my beloved hubby will come to his funeral and if that's me I will be in good company. :)
It's heart breaking to read your story. So glad your wife is so sweet. My husband is sweet also. Just learn that you can't count on people. You will be surprised. Help comes from unexpected places. Our family distances themselves from us. Friends have done the same. Now I find new friends who pitch right in without being asked. We have these wonderful people on this website, thanks to Joan. Take all the help offered on this site. I can't imagine how I would get along without the advice, tips and general information. I rely on myself and me. You will prevail in the end.
So grateful for your thoughts. As I read them, I marvel at the depth of each story behind your words. Charlotte: your words are succinct. Though few in number I'll read again and again. Terry 54: As I read your words, I felt a warehouse door closing on this matter. Funny, I shut out so much in order to focus and preserve and I'd left that hopeful door open. Our humanity is assaulted and yet enlarged at the same time. Ocallie36: I am well aware of what a blessing the sweetness is. Friends have lived through the bitter, angry, awful other side of the disease. In quiet moments, I find my Barbara's sweetness is itself bitter sweet. I know full well our days are easier than they could be and yet the sweetness hurts terribly. From reading all your and other comments I can see that her sweetness is what will remain with me.
This has been a very rich first experience at such a "bare it and share it all" website. Glad I can visit. Thanks to everyone.
Soolow, this is a hard job. Especially to be caring for the love of our life that we had such wonderful plans of the future with. I am caring for my dh who was diagnosed Jan. 09. He is now in stage 6/7. We are 56 yrs old now. My dh can't communicate much and it hurts to see the hurt in his eyes when he realizes his family doesn't come or call. He doesn't know who they are but he does know deep down they are family. You understand what I mean. We left our home, friends, and job to move close to his family. The worse he gets the less they show up. No calls, no visits, no nothing. Me and our youngest son are the only ones that help me care for my dh. I am a very forgiving person but I am having issues in this situation. I have learned that we must have a higher power to help guide us thru this. My higher power lead me to this site where I have met so many caring people. Now they are my family and they never let me down. We all care about each other and our arms are always out stretched to give that blessed hug we all sometimes need. I do know it is not the same thing. I believe we all pass each other in life for a reason. Hope for the future, acceptance when we feel like we are doing a horrible job, love, and prayers are just a few things I have deemed from this site. I am so glad you chose to be here with us. It is an awsome site with awsome people as you have found out. The world and our biological family will let us down, but not here..... Here there is peace, help, hope, information, and love. I am so sorry you have the added burden of an uncaring family. But now you are our family and you will not be disappointed..... Take care of yourself, and hope you have a great weekend......
I have recently modified my will, with thought in mind of not forgeting those family members who should have stepped up but did not. One crisp dollar bill, will be given to her son, and to my daughters " her step daughters" so they will know that I did remember them, and their lack of compassion and concern with the issues in my life.
Response: to SCS, just reading again. EAch time I come here it is rewarding (hard to find rewards these days) to find replys. Your comment about making new friends struck me. To this point over the many years, finding friends has been very hard. Now that I'm in the midwest, I find people are easy to visit with. They have time for you here. However, my problem has been that my Barbara is with me every minute. I can't speak except superficial stuff. Have not been able to get away; can't give the time to nourish a relationship. But, but, but, I've finally interviewed for limited home care through the county. Still working on it. Should it work out and I can get 3-4 hours away, several days a week, I'm all in. I wondered what I would do in the middle of the frozen winter here with my time and your comment sparked an idea; I could visit with those that have been so friendly to us. Thanks!
Mammie: Your husbands progress has been so rapid. As I've said, my Barbara (perfect health) is seven years into this and just now entering the severe stage. We let our home and dream life behind and moved to midwest. What a loss, but it had to be. Now I'm feeling we could have moved anywhere as there are issues here. However, the change to a slower world is probably changed my life. It is unimaginable that your move and great effort has been forgotten. I'm glad for you that you are here. Glad you have a higher power. I'm finding little bits of hope here. I'm sure you will to. We'll visit again.
Moorsb: I can sense your disappointment. I truly understand. May I share? I am the holder of our family's long history-memorabilia, fancy items etc. I've decided like you, it will not end up in my siblings possession but rather to my cousin and his children who have always had great respect and interest in my family's side . My cousin has been my best long distance friend. He takes care of a nice care we left in California and had called once a week. They and they alone will be in my will. In your case, I think that hard lessons are good lessons. I support your feelings!
Moorsb, Your crisp one dollar bill idea might just be something to jar some of those grandkids etc a jolt now when the DGpa, or DGma , or parent is still in a position to know them and to interact with them be it by phone if they live across the nation or several hours away or even within a close driving distance...A nice crisp dollar bill in a birthday card for the older 20 and 30 somethings or older if necessary, for them at Christmas or birthday ....then if nothing ever comes of it, then in the wills we can say something to the effect that our LO remembered them always on their special day...they did not ever return the courtesy with so much as a phone call. You were remembered while the LO was alive but you had no time for him or her...that WAS your reward and is now your memory. Live with it. Also in our trusts we have a clause that states anyone who challenges this trust or the will will forfit whatever may have been given to them.... I will go one step further too. My brother gave me the idea when he lost his wife 3 months ago..when the funeral director wanted to know who the pall bearers would be for the funeral...seems too many of their "friends" just vanished when she got so ill with cancer....so my brother told the funeral director there would be no pall bearers...HE would bring his wife into the church for her memorial Mass himself and he did just that with his kids and their wives and grandson behind him.... We have sons in law who don't get it and the world goes on, we have nephews who don't call but are nice when we do see them but there is no real time given to their Tio, and there are only 2 brothers so this has given me something to consider too.....If they were not here to help while he is alive I don't need them to help push him to his final Mass.
soolow, I understand exactly how you feel...sad to day in our case, with the exception of my brother in law who does come to help, there is little on my side of the family, not my niece or nephews or my cousins on my side of the family bother with so much as a call or note in the mail. I have written and have just given up with it. We too have a house of wonderful collections and my decision is that the things of my DH will go to the girls, they are good girls and do write but don't visit like I feel they should considering all the other trips they do take to other fun places we read about on FB. sigh.... in my trust, unless I so designate otherwise in writing, everything is to be sold and funds donated to the worthy organizations I have selected.
Glad to help. While knowing that my husband no longer "knows me" was very painful, but this also made it easier for me to make time for myself. We all need the company of friends, we need adult, not demented conversation (but I am usually more disoriented than anyone else and watch out you don't cut up your friend's food when out to dinner!) and LOTS of laughs! The break in caregiving is good for both you and your wife. I found that we had gotten into a daily routine that was not very stimulating for either of us. Then we met Dawn. She loves to sing and dance with my DH. (Although I could murder him because he hated to dance before lol) Her relationship has been so therapeutic. now feel comfortable leaving him over night with her. Have fun.
Ah, yes FB...my son and family don't worry too much about how we're doing. He turned 50 in June, never had an invite, guess they thought we wouldn't / couldn't go Only seen them twice this year, mother's day, fathers day..I call them duty visits. I used to see on FB what they were doing , fun etc...life goes on for them. I sent up some money for GS's 21st...no thank you nothing.. Then all of a sudden they deleted FB...now I have been thinking about our wills and who should get what...maybe nothing, a crisp dollar bill sounds like a good idea Moorsb...
Julia, that is so sad that you no longer can even get a glimpse of how the family is doing even by way of FB, which is a heck of a way to know they are alive..I know what you mean too. That is pretty much how I know what our kids and grandkids are up to these days. They do call now and then and with one of them who lives overseas we do get some Skype time so it is not as bad as your situation.. AS for my family, the only way I know what my nephews are up to is FB, same with the grandkids too..Really sad...
Mimi, I think my DIL did not like me checking up on them, seeing what they do,. Even if they're going out for a coffee it's on FB. They live an hours drive from us. Never mind...Karma, her turn will come.
Indeed it will.. We are not invited out for coffee or anything but by our most devoted friend or two if we have one. Why? Because our former friends know we don't really have much else to talk about. They assume we don't read or knit or have anything other than this dreaded disease to talk about..Then too, we may look worn down from the stress of it all...and they do not want to get to close to this disease...they might catch it HAHAHAHA.
OH just reading all your comments as I sip my first cuppa.
Feeling sadness today, I have had a whole 10 days of positive after a major meltdown, so a bit of sadness is called for, and I can handle.
Yes the phone calls are few, and when they do call, it is kind of a demeaning almost scolding, well you have to be strong and others are worse off kind of thing. How wonderful those few comments of love and compassion are, most of them come from this site.
Last night as Dh was going to bed, I could hear little moans as he was sleeping. I crawled in with him and hugged him, for just awhile. We do not sleep together as he just twists and turns so much there is no way I can sleep. That is the way he likes it too.
Every Saturday at our weekly Farmers Market participation, he sits in the car eating, and yesterday I noticed he was going the wrong way more than usual when he got out to walk. My heart is breaking. I do love him so, and coming to this place here has helped me so much to be less selfish.
Soolow, I also found out some information about help with the State, though it is not at this time, when I will likely need it there could be help. Right now, he is in stage 5, and I can manage at least physically...
Just wanted to say I was just feeling the same way. My husband had another major brain bleed which pushed him further into his az. He does not know me most of the time now and when he first got home from the hospital we had a lot of help and company. the last two week it seems like no one want to talk to us. People that were very close have all scattered. So glad I came here to read the posts today this really helped me. Thanks