It seems to me that our friends have almost disappeared. Admittedly, I don't go to outside events very often but why has even the phone quit ringing. Even family members seem to always be making excuses for not seeing me or DW more often. I'm talking about the local friends. Even at the NH, I have noticed that most of the residents have few visitors. Carol's room mate has not had a visitor that I am aware of. I try to be friendly to the other residents and they so apreciate my attention to them. All are in wheelchairs and have difficult manuerving their wheels and the staff is always too busy.
But our long term friends have just dissappeared. Why??????
DW son does not even call any more. I think they are selfish, they only want a relationship where they get something out of it. They do not want to feel bad when they notice the decline and it is hard to come away feeling good. I think letting them know that you still care is important.
Today my friend introduced me to another friend of hers who arrived on the scene. I said I had to scoot since DH was alone..then my friend said..." Her husband ( and she did that little gesture of crazy) is a little looney. I said he has Alzheimrer's disease. The other lady said oh I understand, my mother has AD and my father is dying now from ALS. My friend didn't mean to make a remark like that to be offensive she was just uneasy with the whole deal.
Maybe they think AD is catchy.
Today has not been a good one for me. DH has not been a handful I m just discouraged about everything from his disease to the condition of my house to lack of drive. I have been in a "I don't give a damn" mood today.
I think friends hear the word Alzheimers and get scared off, why ?Do they think it's contagious,no, I think they're afraid you may ask them for help or something. You do find out your true friends. We visited and helped many fo our friends as their spouses were sick but not even a call to now to see how things are going.
how about four sons that never come around or call,my wife still knows then an cries everyday that she feels alone because they never call,one calls about once a month or so an talks for 2-3 mintues an then feels his duty is done for another month an he only lives a mile away,I don't know what to tell her,she did everything for these sons an now they shun her
My step son has not called in mom in months. He is her only child and I think they do not want to deal with it. They want to stick their head in the sand and go on with their life. I am going to write him a letter and tell him what I think of his behavior. What could it hurt.
Ol Don I would tell your son's how much their mom looks forward to their calls. It is a shame you have to guilt them into being considerate. I do not know why our society is that way.
Moorsb,you're our children don't want to deal with it so they ignore us.maybe they think we will fade away.For three years our son told me "You deal with it".He liives 20 minutes away.Saw him every 3-4 mo. He does come more often now,he's afraid we will spend all our money on a nursing home.Our daughter did live only a mile away but moved last month.Means I lost myright hand helper,also my grandchildren won't be close when they come home from college this summer.Wait til our childre get older and have to face things,they'll find out how we felt.
ol don, Maybe it is my frame of mind this morning, but the next time those sons come round needing help with anything at all, I would not be willing to pitch in. My nephew pulled this same crap with my parents. He came to my dad's house one day,walked all through the house as if inspecting ( or wondering " what will I get from this place" ) and then came out and said " when did grandpa get a hospital bed?" to which I said if you really cared and ever came around you would have known it was 3 years ago". He said " well I can't be around old sick people"..this from a kid whose grandparents doted on him and his siblings to the degree they never could find the time to come visit my home until they themselves were ill and needed full time help. I was the one who did the grunt work. So I have been where you are, and I have no time for self centered selfish relatives. If they cannot cowboy up to spend time with their mother who knows them now and suffers so from their willingness to ignore her even after you might tell them how much this hurts her then if they were my kin they would be on their own from there on out. Just my 2 cents.
I know I sound hard but I have seen this far too often and I for one will not tolerate people coming around after all is said and done. If they don't care NOW when help and support is needed they can forever stay away.
Bill - As if the disease itself isn't cruel enough, the disappearance of friends and relatives is absolutely heartbreaking. Especially when I look back on how both of us were called on repeatedly over the years to help these same people for various issues and we never hesitated. I can't count the times my DW said that her sisters and friends don't care about her - she cried about this all the time. As yhouniey mentioned, I often wondered if folks thought the disease was contagious. However, now that DW is in a NH, she suddenly started getting visitors. (ONly lasted 2 weeks though). I was pleasantly surprised with that and it made me really think about the sudden change. I concluded exactly what yhouniey suggested - people don't want to see me or talk to me because they don't want me to ask for help so they could just drop into the NH for a visit. DW's meanness and uncooperative behavior isn't conducive to visitors but folks wouldn't know how bad her behavior was if they never visited in the first place. I also believe that her loneliness feeds her attitude, which is understandable. That's my 2 cents and there is nothing we can do to change it. Thenneck
The other night was one of my lowest yet. I had just endured 10 minutes of ranting and name calling because I had not done the dinner dishes promptly. (He always tells me to leave the dishes and he will do them in the morning.) He usually wants me to sit with him. I had them in water and DH was so upset by this. I could only think how lonely this life was. Then I thought about my daugher. She really is a sweetheart and a good mom but has her own ideas about things. She does not see problems with her dad but tells me that she believes me. Her husband and DH had several years of friendship and then things started going bad because SIL started treating DH disrespectful. This is his personality and he treats everone else the same way. But after a couple of embarresing things happened, DH withdrew from the relationship. DH didn't have words with him or fight with him, just got quiet and withdrew. Well last month daughter called DH and insisted that she needed to find a way to "fix" things. DH told her to just leave everything alone and to let it continue the way it was. She went home and demanded that her husband do something because she was getting tired of the conflict. So this smart 35 YO man called my DH and banned him from "his" house. This SIL had, in the past, cracked off color jolks about being nuts, etc. I had told both of them that even if they didn't see a problem that it would make my life a whole lot easier if they would just be more understanding of DH moods.
So, the other night, I was sitting alone after all of the ranting and thought to myself that I really was all alone. I'm so glad that son lives close (next door) and stops by often. DH and Son talk on the phone a lot and Son is quite helpful. that same night, DH asked me if I made sure all the "gates" were locked. It took a few seconds but I figured out that he meant "doors" and I told him that they were all locked. Son has seen this sort of thing and understands; daughter will, some day, have a lot of regrets.
Please pardon this crass expression but I think our friends are creeped out by the changes in our spouses. No one has actually said it but I get the feeling they'd rather remember him as he was. This is not an excuse, just a possible explanation.
Now as to the kids...what the hell!!! Seeing their Dad upsets and depresses them? Oh boo-hoo. It's just sooo about them. When we were paying for college, picking up dinner tabs, paying for flying lessons, gifting down payments for homes, paying for weddings and babysitting we were worthy of their time. Now that the health and finances have dwindled they behave as if their dad dosen't exist. I stopped being angry a while ago but I feel a deep disappointment that they're not the kind of people I thought we raised.
Boy, did that feel good! After a vent session like this a bubble bath and a cold glass of Moscato (at the same time) is calling me. Thanks everyone. xox cs
I'm going to play devil's advocate. My husband is so far gone that I don't want our former friends to see him as he is now. Our three adult children are very supportive of me-but live out of the area. They know to keep their phones on at all times. Frequently they ask if I want them here now. Thus far the answer is no. My NC daughter will be coming down next week and we will visit Bill. She is a NH consultant and can probably handle the visit. The Fl. daughter would be here in a nanosecond-for me but not to see her father. Old growing up issues were never resolved and I can live with that. At least my friends still do ask how my husband is. But that is after I educated them about the disease. They didn't know what to say or what to ask. .
Bluedaze you are absolutely correct. I didn't want anyone to see my husband in the condition he was in. When I was interviewed for a TV news report I told them they could film my husband from the back but I didn't want his face in any of the footage. When someone would visit I would see the horror and then the sadness on their faces....I didn't want to do that to people. My children were and continue to be amazingly supportive...they even volunteered to stay with their Dad when I would go out of town...my daughter even did it when there was poop involved. Now that is a great kid! LOL...
The last two weeks he was alive I did not allow anyone in to see him. Yep, that included the kids and grands.....They came and said their goodbyes and I told them that was it. My husband did not eat for that period of time and he was nothing more than a skeleton when he finally died. I didn't want that to be their last vision of their Dad.
Some of the old friends are back but I have made many more new friends....I don't hold any ill will against anyone. This is such an isolating disease for the affected and the caregiver. That is why I constantly preach that you have to keep yourself going and doing....and it is up to you to reach out.....people don't know what to say so they stay away and say nothing.
This in no way condones the bad behavior of children....that is very sad.
My first thought when I saw this topic was "If your friends didn't desert you until the late stages, you are more fortunate than most of the caregivers I know". From almost the first word of the diagnosis, both our families acted like DH had done something truly reprehensible in having this disease. The phone stopped ringing, e-mails went unanswered, and I was advised not to tell other people about the diagnosis. My sister told me that she didn't want her children "exposed to this". And this was during the very early stage, when only someone who knew DH well could have even told that there was a problem. Since her children were in junior high and high school at the time, I certainly didn't think they would be scarred for life if he acted just a little bit different from how he had been in the past.
On the other hand, during the past few years I have met some of the most wonderful people I have ever known. In support groups, I've gotten to know other caregivers very well, and I feel like my life has really been enriched by their friendship. And almost every single one of these dear people has recounted, with tears, similar stories of being abandoned by friends and/or family. (In one group, we wanted to trade names of relatives and let somebody else tell them off!)
In my imagination, when I think about writing a book about caregiving, I want to dedicate the book to the wonderful people who have helped us along the way, and then add: "I also dedicate this book to the all people who could have helped us, and didn't—and you know who you are--because you provided a lot of material for this book!"
Jan K, I especially loved your last paragraph.The one couple who we thought we're our best friends have never gone to see Jean in the nursing home. He's still able to enjoy "chit'-chatting" with people even if he can't remember things. It really hurts me.
well I confronted one son last night,his mother had called him at work an told him I took her check book,he shot rigtht r an I finally told him that she cries every other day because her four sons can't bother to pick up the phone an call her,she also helped them thru college,took them to Fla at spring breaks ,skiing out west for Christmas break,cosigned loans for them an now they shun her,his responce was I wish I could be a better son,HUH what the hell does that mean,do the right damn thing,I told him he too will get old an he better pray that his kids treat him better than he treats his mother,he told his mother that he an two of his brothers will be over on Mothers day to take her to breakfast an wanted me to come along,no thanks I don't consider myself part of their family,their all welcome to take her anywhere but I will not be with her.I have nothing but contempt for the whole damn bunch,wish I could enjoy a beer or two but who knows what she can get into whilst I do that,thanks for listening
Our experience is very much the same as everyone else's...some wonderful friends hanging in there, some old friends returning to offer support (that's a shocker..welcome one), and those that would rather we were invisible. When G was diagnosed, I spoke with a very close long term friend, and her response was she hoped he didn't keep repeating himself as that was so irritating!!! Three years later (and just two meetings in that time) she was sad to see him as he was such a wonderful athlete before..hello? What is missing here? Needless to say, that friendship no longer exists.
Jan K, I hear you loud and clear. You write with such style that any book you might write would be one of composure and well concealed frustration and even anger. I don't think I could do that but wish I could.
I have the same kind of experience with my family. My older brother, who has a form of autism, is much more in tune and on the rare occasion when he does call ( which is normal for him) he never fails to ask how DH is. On the other hand, my other brother, seems to think that we are to fall all over ourselves if there is a calamity at his house, someone ill but nary a word here save for maybe a fruit basket that might arrive or plant. But does anyone call to chat with DH while they can, a man who went out of his way for them in the past? Nope.
Personally, if family members refuse to be supportive in the early stages when the LO still knows who they are and as has been said in other posts, cry or keep asking for these absent family members, then at the end of it all, they would not be terribly welcome in my life or frankly in my estate either. Those who do surround you when things are really hard, and are there for the long haul, are the true friends and , in a way, make up a new "family".
When my uncle died from this disease, I asked my aunt what kind of help she would need for the memorial as he had been a CEO of a huge international company. To this she replied that his so called friends, when he was still able to join for golf or coffee ( they were retired by now) learned of his disease they all vanished and she said " I'll be damned if they will be welcome at his memorial. If they didn't care to so much as call him, let alone spend any time with him when he was able, I don't want to see them and their sympathy would be hollow"..so it was a private family service. I could understand her sentiments then and do more so now.
DH's family are dysfunctional, and from early on have been scarce--more so since his Dx. Unless you count spates of interference like giving him a road ready motorized chair when he no longer could safely drive anywhere, and providing him cigarettes while he/we were engaged in quitting (to tide him through). My daughter lives in CA, but we've been e-mailing back and forth and have a tenative plan for his funeral service when DH leaves us. After we had hashed it back and forth, I asked her, " You know what we've figured out is very different than what most of the family (primarily Dad's) will expect. How do you feel about that?" I laugh out loud when I read her response: "They can kiss my a**."
I think family is the one you would most expect to be there when the time comes. Oddly DW has a friend from work who shows more interest and care than any relative. I think most people are just not willing to place themselves in a position that might cause them pain or heart ache to see a loved one slowly fading away and not be able to do anything about it. I think they miss the point of showing that they care is the only thing required.
I think that most of you have just given another reason for placing LO at a loving facility. The NH where Carol has turned out to be my best friends and even talk to Carol in their own way. I go twice a day for 6-8 hours because my house is so depressing. I feel comfortaable to be with Carol.
I have just gone through the opposite experience from those mentioned above. Last Wednesday a very close friend (of over 50 years) came for a few days visit. She was very helpful and kind to my wife. Then over this weekend her younger daughter came for a short visit. While the daughter was here she got a good picture of what I go through. My wife was sitting on our porch (the house we left for the retirement Inn) and Jill was sitting next to her working on her computer. Suddenly my wife got up from her chair and ran out onto the lawn. After a short distance she fell and was unable to get up. Jill had to call for help as she couldn't get DW up alone. She had seen DW walk with very short, halting steps, so expressed surprise that she literally ran across the lawn. Then today I was unable to get DW out of the car to go to church. This time Jill talked to her very gently and finally got her out. Both Jill and her mother have a much better picture of what I go through, and both said they will be back for another visit soon (they live a 7 hour drive away in Rhode Island). These are the kinds of friends we all need.
BLESS THEM! And next time they come to visit, give them a big huge hug from all of us with our deepest thanks that they are there for you. You indeed have two lovely lovely friends..Your report is very touching.
Marsh, you are blessed with good friends! Our close friends from Illinois come to visit on the weekends every few months when they can. They are the only friends who come and stay. We're blessed to have them. Friends who live here always ask if there is anything they can do, but they don't come over to visit.
Yesterday I had a great experience: Jane Goodall came to talk at the zoo where I volunteer. She's 77 and absolutely spectacular. Thin as a rail, but a dear dear person who stayed autographing books (not just her current one) until 7 pm (having given a talk at 1:30). Great stamina - she travels 300 days of the year telling people not to give up hope on the planet or the human race!
In any event, it was HOT (in RI, at least 80 degrees) and people waited in the sun for an hour or so waiting for her to speak. After the talk was over someone was overcome by the sun and a little golf-cart ambulance came in to pick her up and take her to hospital or whatever.
ANd I heard around me people saying, I would be so EMBARRASSED if that were ME!! I said why would you be embarrassed? .. and that's the way I feel about my husband. We are dealing with sad truths but there is nothing we could have done to prevent them, and precious little we can do to change them or make our spouses more "acceptable" to the public. The same could be said for that poor woman. When we survive our experience, our skins will be good and thick!