Reading TheQueen's recent posts about her bouts with breast cancer got me to thinking about how many of our family here have major problems in addition to caring for AD spouses ... which made me think of Nikki. Shoegirl and Kitty responded to bluedaze's thread and Mary's post, but not Nikki. She hasn't posted since late November, and hasn't logged on since Dec 4.
I was thinking the same the other day she hasnt posted or mentioned her 'tests' they were going to do..helloooooo Nikki????? everyone needs to hear from you! divvi
I am concerned as well. She was such a constant poster. I hope her health is o.k. and she will check in with us when able. She was missing before and it was for her own health issues, but she notified Joan. No word now.
I just heard from Nikki. She has been in the hospital. She had the tumors removed, and unfortunately contracted menengitis while she was there. She is home now, weak, but doing better. With all that has been going on, she does not think she will post until after Christmas.
We were right to be worried! Nikki, you have been in our thoughts and prayers for a reason! Get well soon! May your recovery be swift and best wishes for the holidays and new year. I hope you can keep us updated until you can return to us.
Good grief, Nikki, is there anything that hasn't happened to you??? Many wishes for a speedy recovery -- we miss you. I hope you and Lynn and the rest of the family will still be able to enjoy Christmas together.
You are all so sweet! Just when I am sure I am all alone in my war, I come here.. see the love and the same battles in different stages in all of us. I have had a very tough couple of months... on top of all you know, I also almost lost my Mom on Christmas Eve. She is stable, but still so sick and weak. She is only 67, and I just lost my Dad in March.
I have expressed how deeply my love is for Lynn. That hasn't changed, I will always, always love him. But what I have had to face ..what has hit me like a 2x4 upside the head! is...... I am in love with a friggin ghost! My dear sweet husband has been dead for at least 5 years. My heart has been breaking every day for years.......... I had another TIA, I am 41!!!!!!!!!!!!!!!!!! Caring for him is sucking the ever loving life right out of me. When I had my TIA my sibling said, enough!! I will not bury my sister!! It took this to make me see, this is slowly killing me. I plan to still keep him home, but I will no longer risk my health and my life. ((jan)) I so understand what you are saying!!! Damn this sucks!
His children are of no help. I asked for one day a month, one day! Guess that is too much to ask?
Nikki, as Nora said, we love you and care about you. I am so sorry to hear about your mother and that you have had another TIA. We all come to the point where we have to place an emotional barrier up to protect ourselves. The reality is that our spouses have left us - involuntarily, but gone nevertheless. I pray that you have a speedy healing process. Please keep in touch!
You have expressed (between the lines I think I hear...) so much of what I've felt for so long, for at least the past 3-5 years. Yes, I too feel that I "lost" my DH long ago. He is a very different being. And I have been grieving.....tho' not constructively, but bitterly. I have felt resentment that I'm prematurely aging from all this stressing, and that my kids are suffering the effects of collateral damage. They haven't had a completely normal childhood because of the things we must deal with. I don't have the time or patience I need and wish I had for them. I know in many ways I've expressed my feelings here on this forum, and yet always felt some degree of guilt for really being honest about it.
We shouldn't feel guilty for honesty, for expressing our own emotional reality. We need to still acknowledge ourselves, take care of ourselves, and when possible allow others to help us take care of our "patient."
Once things reached the point of having to help my husband take care of his hygiene and he started not always recognizing/acknowledging that I am his wife something inside me took a change. It was the erecting of that wall that others mention. It is a wall of emotional protection for our own hearts. Not a baricade to block our loved one from us, but a shield for ourselves from the sadness, the hurt of what we are losing.
I truly was in fear that I was going to have a heart attack several times in the last month. And I am only 48. I've had major anxiety attacks recently due to our stressful situations. I had alot going on leading up to Christmas, and while helping my adult son, my pregnant dil, and helping with my granddaughter...... between caring for and helping my husband and kids I found myself praying to God...."Don't take me now, not at Christmas. I can't stand to imagine my own guilt of my family suffering through MY death." I realized then that it is just such a part of our very fiber, even when it is our own health at risk we are still worrying over how everything might affect somebody else.
Just take care of yourself. Recognize that no matter what you are feeling, no matter how you wish to express, there is an army of people here who identify, who empathize, and who truly understand.
I did forget to add my best wishes for you and for your mothers speedy recoveries from your health problems. I'm saying prayers for your comfort, healing, and PEACE ON EARTH!!!!
Nikki - I am so glad to at least know what is going on with you. Oh, how difficult life can be sometimes. You have had so much on your plate and at such an early age. Please don't feel guilty, take care of yourself, and know that we all care so much about you.
Nikki: I am new to these boards, but thank you for your honesty. I thought I was the only person on the planet thst blamed my DH for his illness. Although I am older than you by a few years (I'm 53), I hear you, and where you are coming from. You MUST take care of yourself, tia's are no small thing. I will think of you and pray for you and your mom every day. I lost my dad on Christmas Eve 8 years ago when he had a heart attack, so the holidays are always hard. Take good care of yourself. Glad you're back on the boards. With love....Di
Welcome back Nikki..and way to go Girl! I am so hoping that you are feeling better and that your mom is improving. You will not be surprised that many of us feel the same way and just haven't managed to phrase it as well as you. Glad your brother said what he said to help you come to terms with things. I pray you keep your resolve and get whatever help you need for the major part of Lynn's care. Sometimes it helps to hear that we actually have PERMISSION to jump in the lifeboat and not go down with the ship. Your brother is a jewel for doing that for you. Prayers for you and your mom this day.
Nikki, I got to that same point for much the same reasons, but earlier in the disease than you did. I decided I was going to live to survive this disease. In a choice between him and me, I chose me. And it does change how you feel about your husband when/if it happens. There is still love, but it is different.
Judy, I like the lifeboat metaphor. That is basically it. It is OK to decide to survive.
I've never been a caregiver for someone with cancer. One of the things that has surprised me about dementia organizations is that they spend almost as much energy on keeping the caregiver alive and safe as they do working on the disease. I wonder if the cancer organizations do that too? Or is it not as much of a problem?
Welcome Back Nikki, I am so sorry you & your Mother have both has health issues. Hopefully, both of you are on the road to recovery. I also want to thank you for sharing you feelings, before coming to this board I thought how could I love someone so much in the past & have the thoughts I was having. You are in my thoughts & prayers. (((Hugs))) Kadee
Nikki, You put my feeling into words so perfectly. My DH is 85, and I'm 65. At this point I feel like I'm taking care of an older relative, and sometimes, it actually makes me feel guilty that my own mother didn't get this level of care from me, not, for that matter my MIL who suffered from AD. We women seem to expect so much from ourselves in giving care. My DH can still take care of his bathroom needs, although his hygiene is certainly not what it should be. (Maybe I get him in the shower once a week, if I'm lucky) And at this point, your description of still being in love with a ghost is right on. We have truly missed your wise words here at the forum, and I pray for you and your mom's quick recovery. Please keep coming, we need to hear from you.
Nikki, I am so sorry for all you have gone through and pray the Lord will restore you and your Mom to good health. My DH isn't that far along really but there are times I am not even sure I like him. I posted yesterday that for the New Year I was going to take some time for myself instead of most of my time being spent at home. Find joy in each day doing something for YOURSELF.
Nikki - thank you for your post. I think most of us here can relate to your feelings. I also have the same feelings as you. My DH is not as far along as yours, but with the help of this board, I can see things coming on the horizon. At the beginning of this journey I would never have believed I would feel this way, but over the years you do your mourning every day. For them and you.
Nikki, you have evolved.....it is as simple as that. It needs to happen in order to survive when the caregiving is over. I chose to live a full life during the time I cared for him and I am so glad I did. My husband loved and cherished me and I know that he would have been heartbroken if I had let myself be sucked into the dark hole that we call AD.
I separated myself from the man he had become....not physically, but emotionally. I cared for his body until he died. The love we shared was still there, but a distant memory. What I felt for him all those years of hands on caregiving was compassion, affection, and a deep, deep sorrow.
Don't ever feel guilty about taking care of you. I have never looked back and questioned any decision I made or any feelings I had. By the way, I had a brother who took his own life. No matter what you were doing at the time, if someone has decided they can't handle living any more, there is nothing you can do to stop them. Hugs.....
Wishing a healthy and happy new year to your and your family!
Nikki, its good to hear from you. you have found a new bound energy to help you mentally get thru what you need for yourself and your mom. take care of youself now first, and know we will be holding your hand along the way. Divvi
LOL you just crack me up!!! Could call him PB for short and he would think I meant his beloved peanut butter :) Thank you all for your support, I truly appreciate it! Sandy..."Nikki, you have evolved" that is a perfect way of putting it!!!!
Nikki-I too have detached from my husband. Makes me feel terrible-but he is no longer here-just a shell. I am responsible for overseeing his care but at least no longer hands on. I don't spend much time at my visits because it really hurts to see this once vibrant man slipping away.
Nikki, I understand the guilt about thinking the way you have to think if you are going to survive. I feel that same guilt too. And all of us know with our rational minds that feeling guilty for wanting to survive is not something we ought to be doing.
Wow, I go out of town for awhile & everything changes. Nikki, so glad to see you are back. Your posts above were very moving. I'm sure you will keep us posted about your mother. I hope she improves.
You have made such great strides. You've come a long way & I hope you can keep up that healthy detachment. A big hug for you.
Nikki, you have reached the point that it has taken me 8 years to reach. I also have come to the realization that I cannot let this disease kill me also. I am trying to make a life for myself, still caring for my sweet hubby but trying to look at this in a different way. I can do nothing to change what has happened and what is going to happen, yet as I look back at the last 8 years I have also grown older and could not have that many years left myself. It is unfair to let a disease destroy two lives and I will not let that happen. It is called survival and that is what we all must do. It does not mean that because you do not give your life to the disease that you are no longer loving and caring for your sweetheart, husband and friend, it means that you have to go on living until God also calls you home but in the meantime you have to live.
I applaud you Nikki for coming to this realization earlier rather than later, it took me longer and look what I probably have missed. I missed all the family gatherings, all the big events in my family's life, my grandson's big events but I do mean one thing for sure, I WILL be at his high school graduation. I will do more for me in the future and at the same time love and care for my husband.
We all need to come to that point and the sooner the better.
Nikki, you have said what I feel also at least in my mind I am not sure how to put it in action, as I cannot leave my husband alone and after you pay someone to come in you do not have any money left to do anything. I have also missed all the family gatherings all my grandchildrens games have not even been to a store other than the grocery store in 6 months its seems all I do is complain and I hate that, go to work come home but I going to change things. Thank you for making me realize there is a life out there if we are willing to make a effort to go forward and I can still take care of my husband at the same time. Thank you for being willing to share.
Iowawife, I also don't quite know how to arrange things. At this point I don't feel I can leave him alone for any length of time, but he can and does go out for one and two hour walks. He is out now. So having someone come in to be with him won't work.
I also haven't been in a store alone in months. Some of the time I try to go out for a bit while he is walking. He hates it if I go out when he is home, and doesn't much like it if I go out when he is walking. One of our problems, and I'm sure it is yours as well as mine, is that we are under pressure not to leave them.
But somehow I know that I need to do at least some things by myself and for myself. There is a neighborhood group that has made me one of their projects. They've been taking him out to lunch once or twice a month, and when he is out I get to do some things too. Right now one of their other "projects" needs a lot of help, so they might find it harder to help me out at the same time, but again, maybe not.
My next door neighbor has dementia and her doctors want to have her "placed". That neighborhood group is helping her because she lives alone and wouldn't be able to do any of what needs to be done on her own. I found out yesterday that she is being taken around to places in the neighborhood and being helped to pick one of them. And, even in this rotten time to sell a house, one of them may have someone who wants to buy hers because of its location. I know they will help her pack up, and even sell, most of her stuff, so she can move.
Nikki and my other friends: I beliwve that the journey of ALzheimer's takes a similiar road for all of us as we travel the many pitfalls and disasters along the way...We see our sweethearts whom we love so much lose their identity, personality, and even their physical appearance bit by bi t as the years go by. At first, we are determined to challenge this evil, and take up the sword of denial to help sustain us . We treat our spouse as we have always known him/her and our interactions with him/her are predicated upon the loved one always retaining his individuality . Subsequently, we are deeply hurt by the spouse's indifference, seeming cruelty, hateful accusations, and the change in their relationship with us. Finally there comes a pivotal time when we know we can no longer sustain our battle and to survive we know we must "let go" . We realize that our dear one is gone and (this is the hard part) they will never recover. This to me, is like an amputation of a limb. But it must be done or we will lose our whole body. We will still feel the phantom limb occasionally but we are free of the malignant eating away of our very being. We now can be an advocate for our spouse but also can begin to live our life as a single person.
There is another pivotal point I am finding as my DH is now entering his last leg of his journey....I visited him y esterday at the home where he resides and he is now having difficulty swallowing, losing weight,sleeping more, and generally beginning to shut down in his physical body. He did this in his mental and emotioinal , and cognitive areas long ago but I am confronted by the fact that I will have to observe his dying without the ability to do anything to change the outcome. I knew this would come and that it was inevitable but it still comes as a jolt . i know I must marshal my strength to undergo this last agony.
Nikki, you have now let go and don't feel guilt for your decision...it is a normal part of the journey of Alzheimer's. Also, do not feel guilty for y our father's suicide...my brother committed suicide and for years I felt guilt and upbraided myself for many things I felt I could have done to avert the tragedy . However, I finally realized that my brother made his own choice in ending his life and it was his responsibility , not mine.
You have had a very difficult year and I pray that this year of 2009 will bring you a measure of happiness and good health.
Accck! Damn I have been crying all night. Letting go is hard!!! All of your words... such hard earned wisdom!! I plan to learn from those who have been before me... and I just can't thank you all enough for being here! ((hugs))
"This to me, is like an amputation of a limb. But it must be done or we will lose our whole body. We will still feel the phantom limb occasionally but we are free of the malignant eating away of our very being." ...... I could not have worded it better, malignant eating away... yes to my heart and to the very core of my being.
I did something today I thought for sure I never would! I called the VA and county nursing homes just to talk about possible placement. Just making the calls about destroyed me! I can't imagine the inner strength you who have had to place your loved ones must have. I am not sure I have it............ I think it would be easier to keep him home and take the risk that it could kill me too. Fighting to live for me I find, is much more difficult. I have fought long and hard for Lynn for over 5 years, now I just need to find that same warrior in me, to fight for me.
I sent an email to 2 of his 4 children and hope we can have a family meeting. I have reached THE critical stage. It will NEVER be easy, I think I have finally faced that fact. I am sure I am going to be falling apart and leaning hard on all of you.......... and again, I feel so blessed to have you all help me in this journey. Nikki
Nikki maybe you aren't ready for the decision of placing your DH in another place where others can better care for him but eventually you know with your health issuees and his escalating needs that it will be the best for you and him to let others take over the responsibility . This is part of "letting go" . You will find the strength i am sure as you are an astounding woman to have already come so far.
thank you joy, truly... it means a great deal to me.
Something keeps echoing in my mind..... the lady from the nursing home said.. in a soft voice... "just keep in mind, we have 3 shifts of nurses -to do what you try to do every day"
My brain knows I am ready, that fight for survival ... my heart, just doesn't want to let go....
Dearest Nikki, What that nurse said about 3 shifts have been doing what you have been doing.....your heart will eventually have to leave room for Nikki and her health.
We discussed your father's suicide before. He knew what his brother ? had suffered, and he just made the choice not to go there. It was a choice he made, and I hope you find peace with it some day. It's not like he had mental issues that you could have had treatment for. He was avoiding a painful end, and I am sure he would want you not to have the inner turmoil you have about it, as he certainly loved you. Maybe that's the gift you can give your father in this New Year, to actually let go of the anger & guilt about that. I believe the soul lives on.....He would want you to be at peace, he wouldn't want you to be hurt.
Nikki, going out on a a limb seems to be in my nature and pardon my being Sagitarrius and speaking my mind whether needed or wanted:) brutal truth hurts and i for one know firsthand. in your case, we all know how much you revere and adore your dear Lynn..but Nikki, i have been thru yrs of psychotherapy and know that our choices of the may=december matches are messages hidden deep within our psyche. both my last marriages were with men older than myself by yrs. it doesnt take a rocket scientist but yes a PHD:) for me to agree that choosing an older man that is an extension of a father figure is what we are doing in our minds. this being said, in your case- now your young body is rebelling and telling you that its had enough of not getting the nurturing it needs both physically and mentally to overcome the devastations inflicted by the health issues you are having.. the prior posts about your Ddad lead me in the direction that the inability these days to 'let go' of your dear Lynn and let others care for him now in this part of his life, is in a part your trying to hold on to the part lost from your DDads sudden loss. that episode is gone now, and your need to take care of you is now at stake. your body needs repose and rest and times of calm and no stress to recuperate. I know this is hard to hear and you may not agree but believe me, i have spent over a decade in therapy over these very issues. even today i know in my heart my situation is very similar to yours with my DH. i also lost my dad in '06 due to massive heart attack 2 wks after putting him into a nursing home against his will basically he had no dementia at all. it was very sad and all of us feel guilt over that move. we can never second guess what we deem right when decision-making for our loved ones. please consider getting all the necessary info and as you do this you will be preparing for Lynns placement without such duress at a future time. and ps i am also listening to what i am writing for myself. our needs do change regardless of how we feel in the beginning of this awful journey. everyone here has your best interests at heart, my best as always. Divvi