Hi to you. Today a moment of clarity and I wanted to share. As I (soolow) explained yesterday the wonderful thread "Does anyone feel this way?" I have long given up on hoping, wanting or caring if anyone GETS IT about what were are going through in our noble plight to care and comfort our loved ones. But the thought of how it could be said has teased my thoughts for seven years now and I know we are always dabbling in the subject one way or another on this site. So this morning a moment of clarity came to me while finishing up the morning feeding.
If asked today, and I doubt it would ever happen, I'd say this: "You have a normal life. Aside from all the daily bumps and struggles, you can ask your spouse for a quick towel when you've just spilled or for a roll of toilette paper when you've forgotten. Your spouse will remember that it's your 60th or open the door to the resturant for you. Your spouse might lean over and kiss you tonight and say it was a good day, we had fun. . . Those things will never happen for me and while I am more sad about my DW's fate than than I am for my struggles, you know the worst of it is? It's having to watch the love of my life melt away in my hands. . . and all I can do is try to comfortable her/him. And best ofall, when this all over and done, I get to be alone to pick up the pieces.
This was my thought. What might you say if anyone could or would truly listen?
Oh my goodness...I just said this to someone at church last night.. I was asked how I was..and I said " oh fair to middelin'" What? you are not up beat?? I am thinking I am supposed to be Pollyanna???? This life of caregiving 24/7 sucks big time. But instead I said, " how well would you cope with repeating umteen times turn the volume down, answer the same question until you are nearly out of YOUR mind, having to stop everything to run for someone else to prevent them from getting hurt trying something they shouldn't?" And the reply to me was " well look on the bright side, one day this will all be over" and I replied " Yeah, and he will either be in a NH or I'll be a widow in fact..what does that kind of over sound to you? "
But I do rather like your way of pointing out what normal is and what it is not for us...it drives that nail home.
Mimi, I can't believe anybody was that thoughtless. It is really so hard to understand. I had someone say to me shortly after Gord died," well, it has to be a relief>" I was so stunned.
I was asked hundred's of time how my dh was and I always smiled and said "he is doing about the same" or "fine" or in late stage "not so good" or similar,something that perhaps made them feel like they were being kind. I think most people do not know what to say. I am the same way - not so much now as before - but hard to come up with things to say at a funeral or to someone whose spouse or child is very ill. It made me feel good that they asked. I can't remember a time that someone "hurt me" with word said or unsaid. Maybe because I have been asked the same since I was 6 years old, when my Father was very ill for years, also grandmother and then mother and then Daughter who suffered following a bad 4 wheeler accident a few months after my dh passed.
I think our attitude effects us more than the person saying hurtful things. I am guilty of not visiting friends enough - who are sick. I know I should do more - but I just tell myself "I should go visit so and so". It means so much to them when I do. I have a younger cousin who is a nurse and she puts me to shame with her visiting the sick and homebound, often taking them food for flowers. Last week I managed to get 2 visits in and I am working at improving this in myself.
Of course I have daughter's who live near by and are very understanding and I know and appreciate them. I might feel differently if I was alone in my community. My husband had always been a business man in our community and knew hundred's of people so it was seldom we would go out and not see someone who recognized us.
I do understand your frustrations but don't let it get you down. Take care.
"Look on the bright side" .... "Don't let it get you down" ..... Both these things sound sanctimonious. Of COURSE it's going to get us down, sometimes more than others. "Let it" sounds as if I'm supposed to deny my feelings even to myself? No thanks. I may put up a different front to others, but not to ME. If on some days if it gets me down, then it gets me down. Don't tell me how I'm supposed to feel or suggest that I've somehow failed as a person if I "let" things 'get me down' I try to distance myself from the Pollyannas of the world for this very reason.
Long before DH had AD I worked w/a woman whose FIL had it and was confined to a care facility. She'd tell me about his not remembering his children, etc and I listened politely, but thought, 'can't you just remind him?' I did not understand. I was not uncaring or thoughtless, I just didn't know. Then I had to go thru the same thing. My hardest teaching was to his sister. Finally I had to just sit her down and explain and explain--stop trying to help to make things better--that's NOT going to happen. It helped that her husband was aware, otherwise I don't think she'd ever get it. So I'm not too hard on people who don't understand because I certainly didn't.
Soolow, I know exactly what you are saying. I've written, "Who is ever going to call me outside to look at the fledgling birds nesting under the garage eaves, who will bring me my pink pillow or a quilt when I doze on the couch, who will get me a glass of water or hot soup when I have the crude, who will ever again stroke my hands and tell me they are the softest skin he's ever felt?" And you know, I choose to think of those times as a blessing--I--we had more than many. Maybe it's harder for us who had so much good to lose it, than for those who never had it.
I often found it easier on me to just say, 'he's fine,' and go on with the inevitable rather than to belabor the issue trying to make others understand. I don't think it's possible to do that. Only those of us here understand. Give your sweet wife another hug and kiss, I always felt DH understood such loving acts.
I too just smile sweetly and say that he's doing pretty well and thanks for asking. It saves having to hear advice and I do believe that people just want to let you know they're thinking about you and sort of sending good thoughts your way.
The person who said " look on the bright side..." was not trying to be unkind but made a stupid comment. He is actually a very kind, thoughtful, helpful person..but as you say..just doesn't know what this is. One of the other ladies in this group lost her DH to alz and she is doing wonderfully. She sought out some help but the biggest support she has is her grandson and great grandson with whom she spends a lot of time as well as her 5 kids, some who live far away as in Spain and Hawaii and WA state..and only one or two locally..But the continued contact with all of them has helped her in ways I will never know..my brothers are brain dead when it comes to even making a call...and DH's siblings do call and only one takes time to help..Our kids are too far away and my gripe has always been they do not make enough of an effort to reach out to him NOW by phone or better a letter he can re read and share and touch.....their reality is pleasure in life with their own plans and trips etc and they should have these things but their dad is somewhere " out there"...
So for those with a great support system, the going can smooth out and they can find ways to deal more effectively but for those of us without that close family communion it is pretty hard to be cajoeled out of how we feel at any given time and being patronized doesn't help.
Imorh, I tend to agree with your assessment. I, too, don't know what to say to others who are grieving the loss of a loved one or who is sick with a deadly disease, etc. I just don't want to make them feel worse, so I usually don't say anything unless I am very close to them. And, I think most people are just like me in this respect. Most don't have a personal involvement with this disease and are clueless to what we are going through as caregivers, but they do want to acknowledge that something is going on with you and give a bit of comfort if they can. I think it's nice that people will even ask. I try not to let my anger spill over onto innocent bystanders (I'm not always successful at this, though).
With the coming dementia epidemic, there is a good chance that many of those who utter thoughtless comments will become caregivers themselves in future years. Regardless of what we say or do, that's the only thing that will make them understand.
Interesting, last night at Super Bowl I was with old friends of mine and DH--the wife recently was going down the dementia path, had hydrosephalus (water on the brain), two surgeries corrected the condition and she is fine. Even that personal brush with dementia and the fact that they live 5 minutes from DH's ALF didn't inspire them to ask if they could visit him. But to give them credit, when I told them that this week I changed the battery in my home security system by myself, the husband (a retired engineer) said I should call him in the future for help if I need it. That's nice, but I'd appreciate a visit to DH more--I can (and do) hire a handyman to do chores.
As one of the many on here who have lost their spouses, I can say that a simple," I am sorry." is a very comforting thing to hear. I was signing for a credit card purchase the other day . I made a comment about "we" liked this particular card. I paused in the middle of my signature and said that it is so hard to change the "we" to "I". The cashier asked if I had lost my husband. I told her he had been gone for 3 months. She said she was so sorry. I thought that was so kind of her. She could have just ignored my statement and said nothing. Unexpected kindness like that means so much.
I agree..the I'm sorry is such a good answer..it says it all.. When we do share that things are tough with the whatever it might be...calling for a roofer, getting a plumber and whatever else could overwhelm us at any given time and we vent it, the I'm sorry with a How can I help is always nice to hear..cuz maybe there is a way they CAN help, maybe not but the effort on their part just to say that phrase is comforting...
When people ask me how DH is doing, I respond by saying "The answer to that question will always be - bad." It hasn't stopped anyone from still asking because they just want me to know they are thinking of me. I feel as though I can never say again that he is doing well. Some time ago I posted that DH was doing better. That was a mistake. He had a few good days, that was it. I was living in and out of denial. He is not well and everyday he will be not well.
People ask because they care about YOU, not your spice. They can never understand unless their spouse has it or has had it. When someone dies, or has Alzheimer's or other deadly disease, there are no "proper" words of sympathy that we can accept. We WANT them to understand what we are going through. We WANT them to visit our spice, even though our spice don't know them any more. Some do, but they do it for US, not for our spice. We are in this battle alone, and the only ones we have who understand us are here at Joan's place. We DO understand.
I accepted the words of sympathy and caring for what they were. I sometimes got frustrated as well by their words, until I kept telling myself over and over - they don't know what else to say -
And now as a widow (I still haven't gotten used to that word), people ask me if I am okay, or how I am doing/coping. I usually say "fine" or "okay" and sometimes I say "it's an emotional roller coaster, but I'm all right" - They wouldn't understand the emptiness I feel inside because half of myself is gone; or that because I had so much to do for so many years that now that time is floating and waiting to be filled - and I tried and failed to fill it with something I enjoy - but I DID learn patience with AD. I know that later, my time will be filled and I will be happy once again. I have faith.
Mary* I like you used to say that I was fine because I knew that they were being courteous and really did not understand what this disease does to both the patient and the caregiver. It is not like we prepared early on to became a nursemaid to our spouse but now we are, like it or not. WE do it because of the partnership created by years of being together whether they were all good mostly good or a mixture of good and bad. You are right, only the people here really know what it means when you say you are a caregiver. I guess what I am trying to say is that if the person asking the question is being in the know or just being polite the answer changes from I have my days to this illness is what it is and let it go thank being thankful that they at least asked. Now that she has passed it is just I am fine and so is she and let it go at that. I really don't concern myself about their understanding any more cause all I want to do is move on in a new direction and (hopefully) a new life. Only God has that answer so we are working on it together.
I use the opportunity to teach (my defense mechanism)
How is you wife doing . . . ? "Her words & language have evaporated so badly that I rarely understand what my wife wants. Commonly this leads to such extreme frustration that she cries incesentatly. Her mood swings are such that at least twice a week she tells me or others that she hates me, She needs supervision with bathing and dressing but fortunately she can still toilet herself . . . . So, how is YOUR spouse & marriage doing?"
Because I am 53, my friends & contacts enjoy talking about their future retirement plans. (commonly extended travel as a couple) I politely explain how I fully expect to retire a widower who has spent all my retirement money on paying for care. Not unusual to wind up sucking all the air out of the room . . . A close co-worker has a husband with pancreatic cancer - (18 months post Dx) we commonly talk about changing from spouses to caregivers and our shared future as widows.
I figure they might get it eventually. In the mean time I have received 4 inquires from co-workers about how to deal with their AD parents/grandparents. Another chance to teach.
i usually just say. as well as can be expected. and leave it at that. people are being kind and an acknowledgement is usually what they expect, and no particulars. its ok with me.
All I can say is WOW,,,,, such a potent topic. The replys are awsome and so different. I think sometimes that instead of us being the teacher we must be the student. I too wish people would visit my dh,,,, call,,,,, or whatever. When that does not happen I do get negative about the human race. I am finding it easier to deal with that people are in their own little world and really don't understand our world. It is ok..... I am learning that they may care more than I think, they just might not know how to show it. Maybe it is because I am having a good day that I can be so positive in the face of lonliness,,,, or maybe it is because I am finding hope and peace in my situation. Maybe both,,,, but I am definitly learning more about myself, life, and the human race. I try to just smile and say we are hanging in there. It is just nice to have been asked by someone...... Hang in there all of ya..... we are winners and are given the responsibility to make the best out of the worse. And just think of all the lessons the future caregivers are getting from us......... We are their example,,,, let's not spoil it for them. Hope all of you have a great day.......
Amazing how most everyone wants something different or says something different. I for one am grateful that few visit and even happier those that do visit don't stay long. My dh can no longer carry on a conversation and when someone comes to the house I have to do all the conversation, fix coffee, have cookies ready, etc. When they leave my dh seems upset because he knows he is not his "old" self and he wonders what they thought. Also, it is question time over and over again about what was said, who said it, etc. I say thank you for not coming very often. And, please don't call...seems like you always seem to call when I am taking a nap, getting dinner, helping my dh do something. I am sick and tired of this illness and sick and tired of people asking how he is doing.
What I would like is for some male friend to call and tell me to get all the undone man chores ready and pick the day I want and he will be here to do all those little things I can't do. Now that I would like.
Sorry, but I haven't figured out how one socializes with a person who has Alz. and my dh hasn't figured that out either so he sits in total silence.
We have one friend who visits now and then. He was here a couple of weeks ago and I am not sure I want him to come back. Two days after his visit DH starts with his hallucinations and paranoia. He mentioned the friends visit and something about money. I told him money wasn't discussed but of course he insists it was and thinks I am giving money to this friend and other people. DH doesn't want me giving "his" money away!!!!