While speaking to family members someone in the group said, "I hate that term caregeiver, say loving spouse."
They said that saying you are a caregiver puts you on some ego trip.
Naturally I was dumbfounded...
Also, they don't like the term "Terminal Disease".
They wanted me to put a positive spin on AD. To tell ya the truth, other then keeping my DW as happy and engaged as I can, I am at a loss. What's the positive spin? Am I missing something?
A call for help went out from me, and I was grilled....
I was also screwed and burned by my Step-Child that she does not want to have ANYTHING TO DO with the care of her mother. Allegedly, she was abused as a child and is in therapy. Her analyst said she should not care for her mother...
I was already in wonderland with my dear sweet alice, and now I'm getting a nice view of all the levels of hell.
That is about as positive a spin as I can put on this.
I love caring for my wife and I can even deal with the pee pee accidents that are now happening more and more... but this family thing, just astonishes me. I can deal with it, but I just don't understand it.
GG, you're not alone....many people here have friends/family who choose "not to get it" and abandon the parent or sibling. Unlike you, I am having difficulty dealing with the fact that my BIL lives 1.5 hours away and refuses to visit DH. An afternoon of golf would be a great outing for DH but BIL is embarrassed because DH can no longer keep an accurate score. I think LO's are afraid - they cannot adjust to the"new" personality and I really believe there is fear they or their children may be next. It's kinda like the view of cancer was several years ago - people were afraid to get too close thinking it was a communicable disease.
Before DH was diagnosed, I thought I had a good understanding of what family meant—at least to the people I was related to. After DH's diagnosis, I realized that I knew what family meant to me, but other people had different ideas of what it meant.
Over the years I've seen that, besides the loss of their spouses, what seems to cause caregivers (let's call us what we really are, in addition to being loving spouses) the most pain is their families. At the very time when family members should be helping and comforting, they often add immeasurably to our stress and pain. Of course, not all families act that way, but many do. As one experienced caregiver told us at the beginning of this journey, when this is all over you may realize that you no longer want to share Thanksgiving with these people. In our case, even if we wanted to share a holiday with my family, we were no longer welcome because DH has this "embarrassing" disease. DH's family barely contacts him at all, and he has a very large family.
I would be interested in how anyone could put a "positive spin" on any terminal disease, let alone this one. I'm sure that if these same people received the diagnosis themselves, all of a sudden their view of the disease would change dramatically!
I'm sorry this has been added to what you already had on your plate.
When I read the posts about family members in denial and of no help whatsoever I am glad we never had any children. Also there are no siblings. I am the only one left in my family and DH has one sister with Alz. who is in assisted facility in Ohio. Even if I had family still living they would all be in England so it really wouldn't make a difference. I am so sorry that so many have to go through this with their so called loved ones. Just do the best you can and remember THIS family is here for you.
I am so sorry that many have problems with family. This has never been a problem in the case of my DH having Posterior Cortical Atrophy. Our family (mine and his) have been great... Friends..and I use that term loosely, that is an entirely different story. DH's neuro told that this is a "lonely" disease because so many so-called "friends" drop you. This is sad but true.
Good luck, GuitarGuy. I'm sure you are a very caring and loving caregiver/spouse and a comfort to your DW.
Guitar Guy--I don't think there is an "understanding" of how they responded. This happens for a bunch of reasons and before it makes us crazy we have to chalk it up as another --It is what it is. We have other more important things to figure out and deal with. We also have to keep our heads on straight. We are Caregivers. These diseases are Terminal. But also, we have to separate ourselves from the hurt and problems these individuals can cause (not intentionally, usually). We have enough on our plates and must be aware that we are not responsible for their feelings about our LO. It is not our job to explain the decisions we make. They have no say in our LOs care. They must not be allowed to interfere with care. We can be civil, cordial, thankful for true help. We can provide sources for information, provide updates on how our LO is doing, answer reasonable questions. We must search out the help we need, and take care of ourselves so we can take care of our LOs. We must not buy into the criticisms which come our way from the electively uninformed. Personally, I feel sorry for my DH's family, because they have lost so much of his best years, by their own choice. There is a standing invitation to stop in for coffee--they've never showed up. We're on our own and we've worked things out. The families who do "get it" and do help are wonderful, but it's my observation that they're few and far between.
Yes, I remember when cancer was a hush-hush subject, back when no one had even heard of AZ. Back around 1948 a friend of mine's family had her grandmother, an invalid, living with them. When I asked my friend was was wrong with the grandmother, she whispered in my ear, "She has cancer." I went home and asked my mom what cancer was and she got quite angry and asked, "Where did you hear that word?" I was 17 at the time! At least I'm glad we can now say Alzheimers' out loud without embarassment .
When I first started taking DH around to find out what was wrong, I was always called the 'caregiver.' I kept saying, no, I'm not a caregiver, I'm the wife. To me, a caregiver was some sort of professional in a white uniform who did caregiver stuff. It wasn't a negative, it just wasn't what I did. Time changed all of that and being a caregiver to DH for ten yrs was OK, I was still the loving spouse. The two lived comfortably together within me. Before that, I knew people who had AD in the family and when they'd tell me about it, I never really understood, it didn't seem like such a big deal. So I always give people some slack when they don't appreciate the gravity of it all.
I was lucky in that my family was OK, especially my children who kept trying to protect me as much as DH. Please, Mom, they'd say, we don't want to lose you to the same disease. They saw what was happening. Others didn't really understand, they would tell me things they'd found, send me stuff, give DH things that he could not use, all trying to help and always saying, he doesn't seem that bad to me. Eventually they all came around after I had some very firm talks and one BIL who had a bit of medical background backed me up. Eventually friends & some family stayed away. They couldn't bear to see how DH was fading--I, of course, and the children, saw it all the time. But I understood, really, I did. I had enough to deal with, I was quite OK with their not being in my presence. I couln't spare any of myself to deal with their views, their ignorance--go away, leave me alone. Of course it's denial, I was in denial for years myself. Are some family just not caring, glad it's not them, don't want to deal with it, have more important things to do, vacations and places to go? Yeah, there are the creeps among us. Other than washing them out of your mind I don't know what else can be done, can't dwell on them, takes up too much emotion and energy. Some may come around, but others never will. It is what it is.
GGuy - try to let it go. They'll understand 'terminal' soon enough. I wish you well, we are here, been there, done that, listen to us. Loving spouse & caregiver will live comfortably within you, they don't have to understand. Really, it's their loss. Blessings.
Guitar Guy, Tell these people that caregivers are Loving Spouse(s) under tremendous stress, sadness, loneliness, fatigue..... As for Terminal Disease...well what would THEY suggest for a disease that slowly but surely takes the one nearest and dearest to us away one day at a time? What would THEY suggest for a "positive spin" a trip down Memory Lane Disease?
Then tell them what YOU hate about this disease: There is a thread about this..what we all hate. Nice long list for you to use.
Then tell them what disappoints YOU..such as people who runaway from the person with the disease, the people who say let me know what I can do to help but don't mean it; family members who "can't bear to be around someone who no longer knows them"( never mind the fact that they just might make that person's day with a smile.. Then tell them to put up or shut up. From a personal perspective, I have no use for nor do I suffer fools . Just sayin'.
I'm both loving spouse AND caregiver, although I don't think my spouse would agree. He'd say he doesn't need a caregiver. He'd say he does as much around the house as I do. Uh-huh! But, I'm trying hard not to let him believe that's what I am. He would prefer "loving spouse," I'm sure. I do what I can to let him believe as he does. I don't know what he thinks of when he's alone, and there are times when I find him lying down, with his eyes open, and I'll say "What are you doing?" And he'll say, "I'm thinking." Maybe he knows more than he's saying....
As for family and friends, our kids understand now. For a while, my older one thought he was fine, wouldn't admit there was anything wrong, but she does now. They help when they can. But I know that I can talk to them about what's going on here and I ask them to help when necessary. Last week I had "lost it" and called one of them to help. She did. It helped more than I could say.
Friends: Some of them are surprising me. They don't ask how he's doing. Some are ignoring what I told them in e-mails, never replied. It bothers me somewhat, but I don't dwell on it. I think it's hard for them to imagine what he's like now, and I have empathy for that. They've seen pictures of him now and there is such a difference from how he looked 2 years ago that I think it's a shock to them. Some, though, offer help and concern, but I think it's my fault I don't accept it. I find that I'm shutting myself off. I don't know why.
Bev-I think a lot of us do the shutting out bit. It's hard to admit to outsiders how bad things really are. Sometimes it's hard to admit it to ourselves.
we have a "blended" family LO has four sons an I have four daugthers,three of the sons live in the general area an one about a mile away,the only one that even calls is the closest an he calls every few weeks for acouple of minutes,when one of my girls sent them all an email asking if they could help me out the one thats the closest replied if your Dad doesn't think we're doing enough he should just put our mother in a rest home,now thats some compassionate son if I do say so myself,I will never be around any of them again if I have a choice
it's lonely - people mean well - but just don't want to deal with AD or want it to go away. We are supposed to smil and say that everything is just wonderful. I used to do that, but I just don't say anything,
Bettey here your thoughts about others are quite similar to mine. Before I was dealing with an AD husband, I also had no idea of the trials caregivers were going through. Actually all were acquaintances instead of friends - and there is a big difference. Most of us have very few "friends" and may be considered lucky to have a few in this day and age.
We can choose which path to take. (family is a whole other ballgame and I don't cut much slack there, but then again I never had to deal with it as my kids were and are very supportive) Acquaintances and friends I did not expect assistance from, nor did I get any. Or very little. They would ask about Paul all the time and I would say we are doing ok or fine. They left feeling better for asking and I had no grief from thinking them unfeeling. I am pretty much a "loner". I was an only child and grew up without close playmates. I enjoy my own company and can entertain myself pretty well, although on the other hand I really enjoy being with both male and female family and aquaintances.
I am going to work in a once a month visit to some shut-ins and NH friends. Just short ones. It helps me and does wonders for them. I have 3 local "friends" whose dh is in early stage of Alz. and they do not want to talk about it. Denial is a good "comfort zone". Been there, done that. I, myself, am guilty of not "being there" for friends.
I think it is important to keep a positive attitude as much as possible in life. Enjoy the beautiful clouds in the sky, the pretty flowers, smell the roses. We are all granted only one life to live and I intend to do my best to enjoy the time I have left. Take care.....
Good for you, Lois. My Mom has always (and still is at 88) wonderful about visiting family and friends (mostly church members) whenever any are in hospitals or nh's. I decided long ago to try to follow her example, but when I make these visits I find it difficult to keep talking with no response. (We had a lot of AZ in the family) She makes newsy conversation whether she gets an answer or not. We do visit Siem's elderly aunt who has very little family left. He is almost always willing to go if I plan it right. She is so grateful for our visits and has not noticed anything the matter with him. We are really lucky to have two sets of really good friends, one couple especially, who are right here in the village. They seem to be willing to do almost anything for us, including coming over here at 5:30 am to make sure I had no trouble getting Siem in the taxi to the airport (which looked too much like the day care bus for comfort). Plus Siem's two brothers who visit a lot. And supportive kids, but not living close enough by. We spend a day with our son here in Holland about once every three weeks; they started to carve it out of their busy schedule after I ASKED and told them how important it is for us. Before that it was pretty haphazard, sometimes more than a month would go by before we saw them; they both work and they have kids and their weekend calenders would be full.
Our son and DIL in the US are very caring and call at least once a week. Can't do much other than offer moral support (which is wholehearted and very welcome) but they just put us up (put up with us) for a week at their house, and I appreciated it. DH of course has already forgotten.