I am almost overwhelmed and very much upset at the lack of respect that is shown on this board.
Just to get your attention. Is it just me or is it true that the one thing that I can't find anywhere in any of these discussions except in a 'should' capacity - is what has happened to respect for ourselves.
Remember getting respect? Remember expecting it? Respect for you as a person with the right to have the same expectations of it as anyone else.
I should clarify. I don't mean self respect. Every caregiver if there is any logic in the world should feel that since we're doing so much (never mind how much - it's a lot).
And I don't mean the respect of those gratefully on the sidelines not having to do this.
I mean the normal expectation that your wishes and considerations in life are given the same respect anyone else's wishes and consideratons are given. You know, normal. And since we're sucked into the tube that demands so very much called caregiving - there really isn't time or a reality for these thoughts.
Well here's a definition. It's just a working model:
Caregiving - a term describing slavery by love and duty which tries to suck you dry of humanity.
Here's Merriam Webster's definition of respect in part: Denotes a positive feeling of esteem for a person.
Getting much of that? Giving yourself that?
I'll say this clearly. It's the same crazy world as everywhere else. Here are people who (take yourself out of the picture and just think of others here) are deserving of real respect by any reasonable criteria in what life is about - and yet, the people themselves don't feel that. In a sane world we would be swimming in a pool of respect for ourselves. If my spouse did even the half-*ssed job I'm doing for her I would kiss her feet from here to eternity I would be so grateful. Yet my feelings are that the pool is empty. I used to expect respect for my wishes etc. Now I don't. How does this make sense? Well it's the way it is. I know. I asked how it makes any sense.
Wolf,. up to the end, my stepsons did not understand or care what I have been going through for my husband. The took it for granted and did not repect me and were often quite inconsiderate, rude and bordering on verbally abusive of me.
What have I learned from all of the experiences. We need to respect ourselves and take time for ourselves. We tend to loose our respect for ourselves in our caregiving roles as those roles demand that we not be "selfish and do things for ourselves". When we give up so much, there is not a lot left to respect.
With my husband now gone, I am hoping to begin to regain that good feeling again but be stronger and better for all of my experiences.
One thing that keeps me going is the comments I get from family, friends, and neighbors telling me that I am doing a great job caring for my wife. I hope this is true. I try to do the best I can.
I agree, Marsh. My sister, who is having a difficult time in her own life right now, told me the other day that she didn't know how I could handle what is going on in my life and that she admired me. I have always admired her, so to hear that from her made me feel so good. I think I have respect for myself, even though there are so many days when I feel so trapped in all our problems that I have to try not to feel guilty and selfish about it. I know what I have to do to show that respect for myself; I don't always do it but I do try.
I just read your October check in comments about your husband passing. I'm sorry and I hope for you too that you regain that good feeling and strength. There is no winning here and with some luck we will find a renewed interest in the life we've been given.
We know that we deserve respect and we deserve this and we deserve that but for the most part right now I don't think we are going to get the kind of respect that you are talking about. Honestly speaking, it is impossible but I am trying not to think about me and what I deserve because when I do I get mad and have trouble taking care of my DH. Oh yes, I take care of my medical needs and when I am hungry I eat and when I am thirsty I drink but...I don't think that is what you are talking about. I call them the "me blues" Everytime I think about what I deserve it is debilitating for me. What I deserve comes later, I guess!!! Yes, it is kind of depressing but what about this whole thing is not a little depressing. I am just being realistic. Now that I have depressed everyone I have to say that this support group is a highlight to my day.
deb42657--taking care of our own medical needs, eating when hungry, ditto drinking/ thirst are only part of taking care of ourselves. Taking care of ourselves means much more that just survival necessities. We have to treat ourselves better. Our LOs get treats--we see to that. We DESERVE treats too. We have to get over the martyr behavior. It'll kill us if we don't. As our LOs progress on this journey we often find ourselves more and more isolated; physically exhausted, frustrated, angry,and just plain worn out. How can anyone in that condition ever hope to provide good caregiving? We may not be able to do big, expansive things for ourselves while caregiving, but we have to do whatever we can to keep our boat afloat. For me it can be a bag of Reeses Pieces or a new paperback, some carnations, or my 4 hours respite for the month--even if half is spent on transportation. I am as worthy as my DH. Perhaps more so. Without me, where will he be? Besides, if if I don't think I'm worth being treated well, why should anyone else think so?
I would be happy with more understanding. I think with that comes more respect..If those around us do not understand what we are dealing with, how can they respect some of our needs, cares, woes etc..We are not always down but we do face frustrations every single day. If not with our loved one for one reason or another, how about our own selves with our own aches and pains...Too many people think we can just go on and on like a robot and I guess find it odd when we fall apart...
Right now I am in PT for leg injuries and back and hip problems. In analyzing how I got into this mess it goes back years helping with my dad who was a double amputee, then starting in this decade the DH with is hip surgeries, then heart surgery then TIA and eventually our own frame can only withstand so much of an assault..in casual conversation if I mention the PT and pain associated with it ( muscle spsams) instead of hearing a "how can I help" I hear " oh that's too bad" and it is because they do not realize that we are not living a normal life behind these windows and walls. Today when I got that response I simply said..I may call for help if I get in a bad way and need to go to the doctor or hospital..."
I also agree with corsi's views about treats for ourselves. I bring home a bouquet of flowers at times for us to share, or get the DH a pumpkin pie, or some treat for him..but when it comes to me..I might treat myself to a new frame for my glasses ( something jazzy) or maybe a pair of earrings, even a greeting card to send to wonderful me! : D With all my PT pain I think I am due for a get well card : }
I like the idea of a get well card Mimi, I guess by respect I meant like what Joan said in her blog about wanting a husband instead of a child but that isn't going to happen so I might as well stop wanting it. I think maybe some of the problem is coming from the fact that I am 19 years younger than him. I don't know! When I got married I honestly didn't think that the age difference was a problem and now I am beginning to wonder.
We have 8 years between me and my husband. And it seems like more now. He is looking and acting so much older:( I know this is hard on him. You are right Deb, we don't think of it when we are young. Oh well.
We have the same age difference...and I can now recall my mom saying I should be looking at someone more my own age..well love is blind...and I got me a great man age notwithstanding. And who knows, someone my own age could have had some other terrible disease so all of this is in God's hands..somehow He will see us through.. I just wish he would hurry up with the relief I need for my lower back..now got the hip and leg fixed and the lower back is wacked out..The PT gal says my muscles are VERY TIGHT. It must be thanks to the 15 years of taking care of others...dad first then the last 10 DH. Do we get a battle medal for this? Maybe the reward is a diamond encrusted diadem once we get to heaven...
It's funny how a subject will appear just when an incident n our lives causes us to think about such a subject. I have been at this caring for 3 years with little help from family or the agencies that are supose to offer help. In the last 2 months my DW has failed fast and just seems to wander about not knowing where she is or who anybody else is. I don't feel I deserve respect as I haven't been able to get her to bath for 7 weeks now , she says no to everything and just wants to be alone. Yerterday I lost it and screemed at her causing some severe trauma for her. I haven't been able to look her in the eyes since. I am seriously thinking of trying to place her in LTC as I believe she is frightened of me. I consider that I have failed her and don't know how I will live with myself from here on in. I haven't slept 3 hours since and can't stop crying about this incident. I have never felt so alone and sad in my life as I feel right now. I hate this disease.
selwynfarmer - no way should anyone caring for a LO with Dementia or any long-term illness feel that they have failed or that they can't respect themselves. This is a terrible disease and we all "lose our cool" at one time or another. It is in no way "shameful" to ask for help or admit the LO to LTC.
The fact that we on this site care enough about our LO to continue to remain on this site speaks volumes about our integrity. We, who are hear, care enough to seek advice and comfort from fellow members who are just seconds away and we DO understand. My DH passed away last December. He was not as bad as most of your spouses were and I was able to keep him home with the help of a part-time occasional caregiver and my two daughters and SIL who live - 1 beside me and the other 1 mile away. I had set in place, a NH option and was ready to place whenever the need was there. I would not have felt guilty because I planned to go visit with him at least every other day because the facility is just about 20 minutes from where I live.
Perhaps now is the time for you to look into the LTC and weigh your options. Whatever your choice we are all here with you, by your side. Do NOT let this disease take you - the caregiver - with the patient. Please keep letting us know your frustrations.
selwynfarmer, do not be so hard on yourself. I know I loose my cool and say things I shouldn't say. I just pick myself up and try to do better. You must forgive yourself and know that this isn't who you really are. We do the best we can and that is good enough. Now, no more crying. We love you.
Try hard to step back and see what's really going on. I've read your posts on other board and I know how hard you've been working to take care of her. I know you feel guilty about losing your temper; but, look truly into the strain anyone would be under and that you have definitely been under.
It's the truth that almost no one could do all this without showing some emotion somewhere. It's hard to keep in perspective how difficult this is for anyone especially when there are so many moments to face. I know you are not being reasonable to punish yourself for not being perfect. And yes, it is part of the topic to show the same kind of respect for ourselves as we would to almost everyone else facing this.
There can be no good end to the hardships we face here and all must someday face these decisions. I hope that you see the truth of this and feel it in your heart. I hope that when my life becomes as difficult as yours has been that I have as much courage and fortitude as you've shown.
You cannot save her from this horrible disease and if your wife could be herself instead of what the disease is making her - she would love you for the courage and strength you've shown for a long time.
Look her in the eyes and say you're sorry and forgive yourself that you're not perfect. Realize how much you've done for her and let a negative go with all the positives. Let it go.
And for all of us keep a light in the window. The disease is so powerful it can easily consume us as well. We are warriors in a long and dangerous battle. It's dangerous to ourselves when we are so focused and so concentrated on the care of our spouse during this that we lose all sense of respect for our own wellbeing and continuation.
All care for one and none for the other I would argue is hypocritcal. They are everything and I am nothing I do not accept. It's gutwrenching to go through this I do because it's my life right now too.
selwynfarmer--Each of us caregivers has a limit to what we can endure before we look towards residential placement. To be blunt, it sounds to me that you have gone beyond that limit. There is no reason to berate yourself--seven weeks without a bath for my DH would send me over the edge!!!!!!!!!! Are you getting any respite? If not, perhaps you can arrange for some in-home help immediately that will take some of the burden off you, or place your wife in a respite facility and you can then research the long term care options that are available in your area.
I cannot speak to anyone else's experience but, I get respect bordering on worship from everyone who knows the situation in my home. Frankly I would trade some of the respect for some of what is missing.
selwynfarmer, we all have "lost it" at times and feel terrible for days afterward. My experience is that my wife forgets about it within a few minutes. When I appologize she doesn't know what I am talking about. Could you get visiting nurses to come in 2-3 times a week and give her a bath? This would certainly be a lot less expensive than placement and would be good for her if her time at home is otherwise peaceful.
Thank you all for your support as I am still not feeling good about the scream session. I understand that our spouses are very fragile and must be treated with kid gloves as they try to survive whats left of there lives. I think I may have caused a fear factor that my wife cannot overcome as she has only been out of her bed for 10 hours since Saturday morning. On the bright side the PSW was able to get her a bath so I don't have that worry for a week or so. I will see her Dr. on Monday and try to get some direction as to where we are headed. I am feeling a little better each day I just wish she could do the same.