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Special Needs and Grief


Kelly

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Hello:

My mom is dying of Parkinson's disease and the people at the hospice house where she is at are now telling me 3-4 weeks of cognition and then it won't be long thereafter until she passes.

She has had a tough, tough time with this illness for the past two and a half years. My sister is a nurse and does not help. She is angry at my mother, so does not visit or call. Last year she took money from my mother and I had the Power of Attorney changed (we had dual status), and now she is mad and won't speak to my mother. She is verbally abusive to me, so I cannot be around her at all.

My sister has managed to get her children (my mother's only grandchildren) on "her side", so they rarely, if ever, visit.

I am 44, my sister is 43. My mother and she have had a rocky relationship, as have I, with her for many years. Her children did not want to live with her because she is "cold" and oftentimes mean.

I feel so abandoned by her. She left me to take care of all mom's needs this past year (shoved her in a nursing home), but I found a wonderful hospice house an moved her closer to me. This whole process has been HORRIBLE! I feel guilty all the time that somehow I caused this "rift" between my mother and sister, but I know in my deepest heart that it is not true. My sister refuses counseling, mediation, or to deal with me on any civil level; now she is punishing my mother. My mom had already given us trusts, so my sister had her share, but it wasn't enough. I am hurt, confused, sad, angry, guilty, and grieving. My mom and I have always been close and now the end is near. How does one deal with an only sibling who won't speak or help or try to understand? I've written her letters asking for peace and/or counseling, but she mocks me and refuses. Has anyone else ever had this happen with a sibling? I cry a lot and my therapist says I need to be on anti-depressants for this last leg of my mom's life. I would appreciate hearing any other stories. I know that when my mom dies, the rest of my family will, in essence, die. My only niece is hostile to me now (her mother's influence), and my nephew is rude to me. I've been the only one seeing and caring intensely for my mother for over a year now and before that as well. Thank you.

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hello hyacinth. heather here. i have so much to say in response to your post. first of all, i'm so sorry that your mother has this terrible disease. and i'm also so sorry that your family is not on good terms. here are my thoughts: your sister has so many of her own personal issues that she needs to deal with. she will not and can not be of any help to you or your mom until she resolves her own issues. she is making the decission to act/be this way, not you. try to not focus on her so much. that will just prevent you from thinking more clearly in helping your mom. i know that is easier said than done. i know that you are angry and hurt and upset and confused. but try. also, it is a good thing that you are seeing a counselor. continue with that. if anti depressant were suggested, i would say go for it. i was on them when my mom was sick and it really did help me to stay focused and to process my thoughts and feelings better. chances are that you will go off of the meds after everything settles down. i am a new volunteer for hospice. i think that having your mom in the hospice home is just WONDERFUL!!!!! just be with her and talk with her. read to her, play music for her. just have one on one time and really try to make the best of it. yes, this whole process is very hard and confussing and i'm sorry to say, but it will be like that after your mom passes........for a little while. but we are here to help you and support you. it's a rough road but we all will make it. it is so unfortunate that your sister has turned her children from you and your mom. that is something that you can not control. what a shame. those types of actions will have a lasting effect on those children. here is how my story relates to yours: i helped to take care of my mom. i have a 3yr old and an almost 5yr old. and at the time i was taking care of my mom, we also had my dad's 2 sisters living at my parents house......they are both mentally and physically challenged. plus, we had 2 old dogs that needed alot of attention. so i had my hands full. i asked family members on my dad's side to help (very little) with my aunts. they flat out said NO, but call us if anything happens. then, i had NO support from my husband, NOTHING. at one point my kids went 5 days without a bath. (to this day i feel terrible about that) i am not that kind of mom. my dad also had surgery at this same time and required some assistance too. i have a brother who was very helpful and he was my saving grace. he took over in the late evenings and on the weekends. plus he worked full time and went to college full time. well, we made it thru. then, came the funeral.........and all the family showed up with big tears like they lost their mom. i was SO MAD!!!! i just walked away. they were so rude!!!!!! that is what i thought/felt at the time. i was VERY ANGRY!!!!!!! so, i do know how it feels to be "alone" thru this type of thing. but you will make it. be strong. come here to talk whenever you feel the need. concentrate on what is best for your mom and cherish the time you have with her. you will be so happy that you did. and just know that you are doing a wonderful job. take care, heather

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Beyond Indigo Is Looking for Message Board Monitors

Interested in volunteering a few hours each week to monitor a message board and interact daily with the Beyond Indigo community? We're looking for monitors to share their experience, strength and hope. If you are interested, contact Julie at julie@beyondindigo.com for more information.

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Thanks so much, Heather. Your post was helpful. It's good for me to know that I'm not the only one with unhelpful relatives...I've felt so alone.

It's so hard saying "Good-bye" to a loving, sweet mother, but in my heart-of-hearts, I know it is time; she has suffered long enough. I visited with her for a long time on Sunday (at the hospice house) and she told me in the evening, when I could see her getting tired, that she didn't want to go to bed because she didn't want to leave me. The wonderful "angels" at the hopsice house said to me, "Did you understand the message?" Yes, I did. I need to tell her now that I will be okay and that I know she is tired. They will help me with that, too. Fortunately, my mother's 80 year old sister is going to come from Florida on March 30th for a few days so she can say good-bye. This is the hardest thing I've ever gone through in my life. As a friend of mine said, "You're never too old to lose your mother." It's so true. Thanks much and I hope things are going better for you as well. Sounds like you are a very lucky gal to have such a loving brother. I'm envious. I'll be back.

Hugs in Cyberspace to you!

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Hi all –

I’m sure you’ve noticed that the message boards seem a little different. We’ve streamlined the message boards. We’ve unified the forum and thread names and tried to make things less confusing. I hope that it has made things easier for you.

We are considering adding new threads to the topics and would love to hear what you would like to be added. You can write me at julie@beyondindigo.com to share your thoughts and suggestions. I would love to hear from you.

I am also still looking for message board monitors. If you are interested, please let me know!

Take care,

Julie

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Hi,

We here at Beyond Indigo are looking to talk to people who are going through

the end-of-life process. We are looking specifically for people who are sick

and are being cared for by a former spouse -- someone they once were

married to and have re-established a relationship with in life's later

hours. We would be interested in talking with people who are sick, or their

former spouses. If the sick person has already passed, we be interested in

speaking with the care giver.

If you know someone please email me at kelly@beyondindigo.com.

Thanks!

Kelly

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im glad i found this website..reading all these posts has helped alot. well...im 21 and in Oct 2004, my mom, whose only 46 was diagnosed with stage 4 breast cancer...and we found out on friday last week, that it has spread to her lungs and liver. The doctors have stopped chemo and now she in on hospice :( my mom is my best friend. i cry every day because i have to take care of her and i cant see her suffering so much. i am so scared of losing her. i dont know what i will do without her. i need her in my life. i am not sure how to cope with this. everything has happened so suddenly. just this past july i went to canada with her and we had so much fun and now, she is bedridden and waiting to die. i never thought she wouldnt be a part of my life, at least not this fast. i hate the way my life is. i miss the way my mom used to be. im so scared she will die and i dont know how to prepare myself for that day..

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Pakigrl, my wife has one of the dystrophies, and the type she has causes excruciating pain, swelling, and other symptoms. In the final stage, where she is, death is a constant threat, because these people have such volitile blood pressure they can have a stroke or heart attack at any moment. Well, yesterday my wife had what looks like a stroke, and the docs are still puzzled over it, but are thinking more that it was than wasn't.

I surely share the pain and frustration and sorrow you feel. it hurts when we love someone so much and have to go through watching helplessly as they suffer such a thing. My thoughts and prayers will be with you through your ordeal. Please feel free to wtite and update us on how your Mom is feeling and doing with her condition. Be as strong as you can be. Of course, shen you have someone helping with her care, be sure to do something special for yourself. A little pampering to make you feel special and nurtured. It will go a long way in keeping you healthy and able to care for her. From what you wrote, she sounds like such a sweet lady, you have my heartfelt sorrow for what you are going through. Look to the positive in everything.

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tinasdad, thx for replying...it helps to know that there is someone else in the world who understands what i am going thru..most of my friends are 21 and so they have never experienced something like this and its hard to talk to them. but you know what hurts me the most is watching old videos of the family and her and the happiness we used to have. It hurts to know that those days will never return. Its really hard. I never thought I would lose her, I need her in my life :( I will pray for you and your wife and I hope God takes her pain away. I felt so bad when I read your post, your wife must be in alot of pain, stay strong for her and I wish her the best.

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Make a Buddy Connection

It's been 7 months since my Dad passed away . He had lived with myself , my Husband and 4 children .We all learned the importance of having "Pa" share in our family ...His quick wit and words of wisdom were always greatly appreciated. As time progressed our family learned more about history,values and the importance of caring for others.

Last year as his health began to fail more demands were placed on all of us .Very little time was spent on ourselves ,I have a brother and two sisters ,who live apx 1hr up to 2 1/2 hours away they were asked if they would be able to come to our home and take care of Dad for 1 weekend every 4th

month ,it's amazing what excuses they came up with (My wife wont let me....Ihave to do street ministrie on Saturday......Or gee if I have nothing planned maybe I'll be able to come for a couple of hours. Needless to say no help was recieved.

My dad's health rapidly went down hill in the beginning of this year. I took a leave of absent from work to be with him an make sure he recieved the proper care at home .... Still no real help from my siblings they did come down the last 2 weeks of his life for a day here or there , but always needed to go back to their home because of work,a dog or just being too tired to help out.

My Dad passed away on Feb 8,2005 at the age of 89 He was a son,husband,father,grandfather and Great Grandfather and a PearlHarbor Veteran.

I have no regrets knowing how hard it was taking care of him .I only wish that his other children showed him how important a person he was By taking the time to spend with him if only an hour.

Being a care giver has many demands but the rewards are tremendous.

I thank God for giving me the opportunity to show my Dad how much I loved him and appreciated all that he had given up for me.I miss him every day not hearing his voice telling me to"have a good day and don't forget to smile at the boss"... So for now Goodnight Dad and I'll see you again Love Ya

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HokeyReligions

Hi all,

I hope that your lives are going along more smoothly and with less tears now. Maybe some of you have reached the other side of the tunnel or maybe glimpsed a pinpoint of light ahead.

My husband is doing better than we had hoped, although he has a long road ahead (we hope). My mom was in a nursing home for a while and is now back with us, although her condition is deteriorating and she requires more care. I am working at yet another temporary job - still unable to find a permanent job.

I had a minor heart attack in July and I need to have at the very least- stints put in. The doctors at the hospital said that it was possible that if I undergo angioplasty they will determine that I need by-pass surgery which they would do at the time, which we can't do because of money.

So I am on aspirin therapy and taking some other meds to keep going. I start a new temp job on October 3 and if that goes well I may be able to get a full-time job with the company. Because I have not had health insurance since 2003 I won't be eligible for coverage for a full year after becomming permanent, but at least there will be that hope.

I am very worried about my own health now though. My BP is very high and the last time I was at the ER they wanted to admit me but I declined and signed out against doctor's orders because I had a new job that week. They gave me nitro under my tongue which helped and I'm now on a blood pressure medicine.

I've been doing some volunteer work for the victims of Katrina (I'm in the Houston area) and that has helped me. Most of what I've helped with are the animals. I've given out water and talked to people and helped a little there at the dome, but I seem to find more strength in myself where animals are concerned. I don't mind scooping poop or clipping nails or cleaning crates because I have wagging tails and sweet dog kisses as thankyous and that is the best medicine for me too.

We struggle along day by day. I don't know how - it just happens. I don't feel like I used to. I feel worn down and broken almost all the time. I don't have a support system other than the Internet. My brother is useless and we are not close. There is a sister that I have not seen or talked with in over 20 years but I don't count her because I can't stand her. She is about control not support. She has been going through brother and putting out hints about what she expects to get when mom does pass away. I'm sure I'll have to deal with her then.

I don't have any friends other than my husband's friends and it's hard not to have anyone but my mom and my husband and I can't lean on them because they need to lean on me.

But the world keeps turning. We are bracing for Hurricane Rita now. I'm far enough from the coast that a storm surge won't reach us, but we expect to lose power and possibly have some flooding and strong winds. We don't have flood insurance because until recently we were not in a flood plain. They changed the lines though and now we are. I'll worry about if it happens and take what precautions I can now.

Peace everyone.

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I have just joined this website and this is my first posting. I know what you are feeling and the agony you are going through and I'm sorry to say I don't have the answers as I am also floundering and lost. My husband also has cancer [Prostate] for seven years we have been fighting it but he is now on dialysis through the spread of this disease. The hormone therapy is no longer working and we have been told his time is near. I get panic attacks at the thought of losing him, [we have been married for 45years and have 4 adult married children] We are on a joint pension which will halve when I lose him but I feel that is a worry for another day. All I want is to have our lives back, the happiness we had, we were friends he was my rock, he was always so strong now after losing 65kg over the past 2 years he is so frail, it is agonising to see him like this and not be able to help. I must find some way of coping with what is happening and you must too. I pray for strength for me and for you and hope you find peace and reasurance in the fact that in your grief, you are not alone!

BEST WISHES

I've been here before. I lost my children in 1999 and 2002. I lost my job last May and have only been able to find temporary jobs at half salary. My husband is diabetic and disabled and has not worked in 10 years. He could not make it on his disability check alone and I could not make it on my salary alone. We just barely get by, but we have held on to our home and are happy here. We have no life insurance or health insurance. Our prescriptions cost several hundred dollars a month -- but we manage. We have always said that as long as we are together we will be okay.

We just found out yesterday that my husband has cancer. It is inoperable and he has less than a 1% chance of survival. I don't know what I am going to do. I have to work, but I don't want to. I want to stop working and just be with him. But if I do that, we will literally be out on the street! I can't lose him. I can't go on without him--he is my reason for living. I have no one else, except my mother (who lives with us) and she is an invalid. She will have to go into a state run nursing home. I love my mom, but she hasn't long to live and I've been trying to prepare for that -- but I can't prepare for losing my husband. He's only 51 and I'm only 43! We have 5 dogs now and we love them dearly -- they have become our children, and if I don't work we will lose them too. I don't know what to do and my life is spinning out of control. How can this happen! Why? I don't want him to die. I'm at work now and I want to be home holding him. I have no sick days or vacation days -- I'm strictly contract work right now--if I take a day off I don't get paid. Including holidays--but I've felt very lucky to have a long-term job assignment in this economy where unemployment is so high where I am.

He is my world and I can't bear this. I just can't.

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Sorry for everyones situations...

I just want to throw this out....my 17.5 yr old son was killed in a car accident Jan 1 05, I gave birth to a girl, 2 mos earlier....anyway....

I have been reclusive, inconsolable and taking care of a baby by myself....had help in the beginning- but time moves on and so do the people in your life...I feel very alone right now and am having a hard time with the grief and what to do now....and my friends are busy with their lives....My friend said she feels guilty and wonders if I ever leave the house, others say other things...maybe someone...a.caregiver person could give me some real perspective here, instead of my toxic self-speak...no one cares, its not important, Im not important, sorry Im such a problem, i can do everything myself.....it seems to be becoming an unhealthy situation...at least for me, with all the thinking I do. Thanks, in advance.

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Dear Griffinsmom,

I'm so sorry to hear you've having such a difficult time right now. You've had so many major things happen in your life so quickly. It sounds like you want things to change, but you're not sure where to begin. Your daughter needs you now, and perhaps focusing on her need to be nurtured can help you to come out of the shell you've built around yourself (and I believe we all build that shell when we've lost someone we love). Do you think it might help to create some type of daily structure? For me, consistency and predictability in my daily routine help a lot. Maybe others who have little ones can help you from their experience. I have no children, but I was the caregiver for my husband when he was ill.

Let us know how you're doing, and know we're here for you.

DeeAnn

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griffinsmom

Thanks Dee Ann-

We have a schedule- Blues Clues @8, Max & Ruby @830, breakfast, play, dressed, Franklin or outdoor chores or park- lunch, Jacks Big Music Show, nap....you get the picture. Thank God I really LOVE my daughter- she is the sweetest, and if it werent for her, I dont know where Id be now....Its just hard because I am just inconsolable when it comes to Griffin- no one can tell me anything, even the therapist....I just flat out refuse to accept what has happened, and when the truth is inevitable, I just break down. I get up, but the breakdown just hurts- theres nothing you can do about it. I just cant say the "d" word. Griffin has a website- griffin-schwartz.memory-of.com, also www.xanga.com/Griffinsmom- they are both linked....I did do this. Much of my anguish is self generated by negative "self talk"- so, I have to work on that....or take anti-psychotic meds.... I raised Griffin by myself for 17.5 years, and now, starting over again...well, it is a blessing- and if Griffin was here, the set of problems would be different- but I wouldn't be so incredibly devastated, ya know? I think I left out the fact that my mother came for a visit and blew her brains out in our bathroom (Griffin and I lived in the house alone)(my house, I bought)...during the summer of 2001...(sorry)

I read your story about Eddie- it all sounds very loving and peaceful for him. Sounds like you all did a great job for him.

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clittlelady

GRIFFINSMOM:

Hi. I read your posts on another forum, responding to a very angry person who threw out some pretty wild ramblings and insults to you and I. Just wanted you to know, I'm proud of you for all that you told that person and the way you stood up for what you believe. I haven't read all your posts here, but enough to know your life has been turned inside out. I usually post in the loss of Mother forum. Mom died six months ago. I have one child, a son, 26 years old. I had him alone for three years and then married a wonderful man who adopted him. I know the bond I have with him, always felt it was me and him against the world. My heart breaks for all you are coping with. What a blessing that you have your little girl. I can't say I understand, because I haven't been there, but I did see what suffering my Mother went through twenty four years ago when my 37 year old brother died following a horrible motorcycle accident and two weeks in a coma. She was forever changed. I worried so much for her. Grief had many different phases for her throughout the rest of her life. However, she did get to a point that she was able to live again and smile again. She always told me, there will never be a heartache so painful as the loss of a child and she hope that I never had to endure that. That is my prayer as well. Reading posts from souls such as yourself (I mean, I do believe we have a soul, "smiling".), it gives me strength to know I would have to continue this Journey, just as my Dear Little Mother did and as you are. I realize it's a moment by moment process. You will be in my prayers. Nothing will change what has happened and you are certainly entitled to your time of grief. I pray you will be able to continue to live, to honor your son's memory and show your daughter how it is possible to have happiness again, for both of your sakes. God Bless.

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Dear griffinsmom,

I just want to send you great big **hugs** right now. It's a tough journey that has a lot of rough spots along the way. Know we're here for you.

It's good to hear from you too, clittlelady. Sometimes, just knowing others who have lost a loved one are here to offer a shoulder is what we need. Thanks for being the wonderful women you are!

DeeAnn

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griffinsmom

It used to be..."life is too short..." But now, after the loss of a cherished child, life seems like it is going to be unbearably long. I just turned 46...If I live to be 76...thats 30 years! Then on the other hand, in my case, that only gives Gianna a Mom till she's 30. Whats a mother to do? Seems the questions never end- as the tears never end.

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Guest Guest

I'm not sure if this is the right place to post my question, so please re-direct me if needed!

I am falling in love with a wonderful man who lost his wife, and who also has 2 children. I'm wondering if anyone can point me to some resources/books that I could read so that I can try to understand more about their experience, and be as supportive as possible. I am comfortable talking with him about this, but I also think I need to learn more on my own. Any ideas would be greatl appreciated. Thanks.

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It used to be..."life is too short..." But now, after the loss of a cherished child, life seems like it is going to be unbearably long. I just turned 46...If I live to be 76...thats 30 years! Then on the other hand, in my case, that only gives Gianna a Mom till she's 30. Whats a mother to do? Seems the questions never end- as the tears never end.

I totally understand how you feel. I lost my brother last January and sometimes I just want to die so I can see him again. The pain gets unbearable and you think you can't make it. I too question, "when will this end"?

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Hi Griffinsmom,

I was reading through the posts and yours touched me. My heart goes out to you and all you have to face. My best friend lost her oldest daughter at 18 and to this day.. 30 years later, she still has trouble talking about her. I'm sure she has happy memories but the loss of a child doesn't go away. We just have to find ways to function and enjoy life again. I lost my older brother, who I was very close to, about 8 years ago. I still miss him terribly and the only way I stop myself from letting the sadness creap in, is to tell myself that I have to live for him. That his life was cut short and I should make the best of mine. I visualize him watching me and knowing he would not like it that his death has caused to much hurt.

Have you read Elizabeth Edwards book, Saving Graces? It's excellent. Her loss is similar to yours and she has wonderful insights and resources that helped her to cope with her sons sudden death. There are also many suggestions of ways to keep her sons memory alive.

One day at a time...

It used to be..."life is too short..." But now, after the loss of a cherished child, life seems like it is going to be unbearably long. I just turned 46...If I live to be 76...thats 30 years! Then on the other hand, in my case, that only gives Gianna a Mom till she's 30. Whats a mother to do? Seems the questions never end- as the tears never end.
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Guest Guest

I'm not sure if this is the right forum to introduce myself, so I apologize ahead of time. My name is Jess and I'm dealing with the soon to be loss of my husband to cancer. I am only 25 and he is 30. We have a small daughter who is 4.

My husband has been diagnosed with a cancer that is now in a terminal state. The doctors don't know how much longer he has but expect it to be only a few more months. I am scared out of my mind. I have no clue what to do or where to start planning a life without him.

I wish I could sit back and enjoy the time we have left, but I have a small child who is going to lose a father and needs a mother who can maintain a decent life for her once he is gone. Unfortunately for me, like a lot of women, I'm not the working one. I've barely had a part time job since my daughter was born. I've relied on him for everything we have and now I'm facing the idea of not being able to provide the way he always has.

And the financial aspect is only the small things I have to deal with. I'm losing the one person that seems so perfect. I have never connected with anyone, not even a friend, the way I have connected with my husband. He is essentially the best friend I have and now he is going away. How do I deal with this? How can I hold it together for the few months I have left with him?

I'm baffled, I'm at an utter loss. I have suffered a lot in my life. I came from a broken home with young parents. My father became a criminal and my mother left me with my grandparents and started a new family. When I was 17 my dad killed himself. Because of all this I consider myself very strong, but what is going on now is unbearable.

I've tried to cope with it. I don't cry anymore and I certainly don't show any fear around him. But I feel like I'm numb and I'm worried that a break down is not too far away. I don't think the situation can handle me breaking down and that scares me a lot. I just feel lost and already alone. To me this makes me the most horrible person in the world. :(

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jackiewitter

Guest,

I was just reading your post and I am most certainly not the one to be speaking with you. Actually you made my own grief seem small. I lost my brother not too long ago and have been distancing myself from my husband. After reading your post I cannot imagine my life without him.

There are people here who have lost the loves of their lives and I hope that one of them will reach out to you. That you are concerned for the future certainly does not make you a horrible person. Even though your husband is still with you, you might want to post at one of the other threads, Loss of a Partner. There are others there who have experienced the loss and may be able to offer you advise and support. I will pray for you and for your precious daughter, and I am here if you wish to talk. May God be with you. Peace and blessings, Jackie

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Guest, you will get through because you love your husband and want to do the best you can for him. I understand what you mean when you say you feel you're already alone. My husband lost his battle with cancer in July so I know what you are dealing with although I didn't have any small children. That makes things worse, I'm sure, but stay strong for him. In a way the numbness is a protection for you and it's okay to be that way. Try to concentrate on him and make his last days as good as they can be. You will be glad later that you did. Please stay with the boards.. they help. Mary Jo

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secondnature

Hi there! My mom has been diagnosed with stage 4 B vulvar cancer just this past March. No one knew that she had it, she did not seek medical help until we actually found her in her apartment unable to walk, had lost 20 lbs and was in a confused state of mind. We had spoken with her by phone up until that time and were aware of only a pulled muscle that she had in her back, she seemed fine on the phone. She never let on that she was sick. Her personality is very different than what we are used to, which makes this even harder. Mom has lived with a lifetime of anxiety, paranoia and anger being a daily part of her life. She has no friends, no family that will speak to her. Just my brother and I and our 96 year old grandmother (her mother). She has fought and kicked and screamed all the way, blaming us kids for all the hard stuff she is having to go thru, even tho we are making it all happen for her. She would be dead if we had not came and literally scooped her up and took her to emergency! Due to the severeness of her illness it was important to put her in skilled nursing, as she cannot walk or does not even seem interested in taking care of herself. We got her onto Medicaid, as she had no insurance either. She is only 63.

We have had to fast forward through information and feelings at break neck speed, because we had to. Even tho her illness started long ago, we just found out about it at the time when it was too late. It has been an awful and horendous experience. Both myself and my brother are still young, have families and have our own businesses to boot. It has really been a nightmara for us, the ones who have had to do damage control. And, of course, a nightmare for my mom, who has the cancer in the first place.

Her new primary care physician is already mentioning to her that she does not have to continue with chemo, and that makes her so sad and scared. I feel that if the woman does not want to know then she does not have to. Is it possible to withhold the upfrontedness of her situation from her, based on her wishes? We are working with a hospice funded program called Transitions and they are wonderful.

Also, are there any good suggestions for being a good caregiver to the best of my ablitly to someone who is sort of out of their mind most to of the time?

I am a \"pleaser\" person, and feel often that I want to save her, be Pollyanna at all times and support her wishes. But it so appears that she is losing the battle. So hard for my brother and I. We have both expressed anger towards her to each other, as we feel angry that she let this disease take her over without telling us. We feel betrayed. Is this normal do yu think?

Thank you!

second nature

Any suggestions are so appreciated.

She is in denial of her prognosis, does not want to know anything negative. She has started chemo and is on her third round.

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jackiewitter

second nature,

I am sorry for the position that you and your brother are in. It is so hard to care for someone when they don't want to acknowledge the extent of their illness. I am without a mother for the very same reasons. I was living out of state when my mother was ill. For over a year she continued to tell me how the doctors were looking into different medicines and such. The truth was that she was not honest even with the doctors. My mother lost 70 lbs and never told me, it was only when we came home for Thanksgiving that I saw how frail she had become. Fear that she may have to go to the hospital, she would rather have died in her kitchen than spend one moment in a hospital not being able to do anything. I believe she felt as long as she was home buzy then death would not knock on her door. I am angry with her because I needed her. I did not want her to die early (71). When she died she left my father (alzhiemer's) alone and he loved and needed her so badly. We moved back to Texas in the year after mother passed away so that we could be here for my dad. The situation is different because of his disease, but all I ever did was be here for him. On the weekends my brother and I would take Daddy from the nursing home to his home (the house we grew up in) and let him wander around the house and the yard. I don't know what your situation is medically, with Daddy there was nothing we could do to assist, just watch the alzhiemers progression. It took him just three years after Mom left. I think one of the best things we did was the nursing home, Daddy seemed to do well there, but he was not aware of his impending death, I don't believe he was. He had moments of missing Mom and then those passed.

While I am typing this I am seeing just how angry I am at my mother, my feelings toward my Daddy are so different, Daddy could not help his disease, Mother could have. I would offer this advise, try to make peace with your Mom. Spend as much time as you can with her so that you don't harbor the angry feelings, I sure wish mine were gone. I wish that I had something more to offer than that, just be there (by phone or person) as much as you can. While she may not be receptive to it, you will find some comfort in that you did what you could. We flew home two weeks before Mother died and had a wonderful visit, but I wish it could have been more. I regret that deeply. I will pray that God help you and your brother cope with this. Peace and blessings, Jackie

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hello, I'm new here. I don't know if this is the right place for me, let me know.

My son has an illness, he will die young, we don't know when. I'll leave it at that for now. Is this the appropriate forum for this? If now, please direct me as clearly as possible to where I could/should go. thanks, j

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4everjoeysmom

Julie, I just read your post on another thread and I see you here... And I am so very, very sorry that you have to experience the pain of losing another child. I just wanted to express that to you to let you know someone out here cares. Warmly, Claudia

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I am a caregiver for a friend with ALS (www.claudiasfamily.com) and her disabled son (Fragile X Syndrome & Autism) I would like to know if anyone else is dealing wtih similar situations.

I also would like to know how you all deal with the emotional & spiritual impact of someone that is dying that is very angry and seems to feel this whole process is only about them? Is this typical?

Thanks

Amy

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Guest Guest

Wow! I am so glad I found this place.

My dad is dying of heart disease and lukemia. He is 81. I am the caregiver and he is living in my home. My sister and brother are useless. They can't even pick up the phone to call.

At the beginning when I realized that I was to be the caregiver I was soooo angry. I was mad at everyone and everything. I went thru extreme anger towards my dad because here I am giving what I can to him but when he needed to care for me I was put in foster care.

What I expected to be the time from Hell turned into a very special time for me and my dad. We had time to talk about all our issues, forgive and say "I love you". My life makes so much sense now.

Here I was thinking that I was giving only to realize I have gotten so much more from him. He is still here but fading fast. I treasure every single day.

I feel so bad for my siblings in missing this time.

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Caution Religious Content: 

RAMBLING.....

Hi everyone!  I am Barbs sister.  i can't remember the last time I checked in.  I am finding myself incredibly busy as the caregiver for my friend with ALS and her son with Autism.    ALS is taking away my friends ability to do things with her children.  She's informed me that they accidently lean on her or push against her and is causes her a great deal of pain.  These talks often lead to discussions on whether or not she'll vent when the time comes and at this point she is leaning against it because she won't be able to participate in her kids lives.  My friends doesn't have a peace about knowing she is going to die & go be with the Lord.  She is a Christian but there is not the peace I've seen in other people that know they will go to be in Heaven.

So, it's been an incredibly hard week emotionally.  I have found myself thinking about my brother Robert, who passed away in a car accident approx. 16 months ago.   I often think how blessed my brother was to die instantly.  To know he is with God, not in pain brings me such peace. I also think about how my SIL was blessed on some level too not to have to worry about his care, due to physical or mental disabilities that might have occured.   And as awful as it sounds, when my friend is having a bad day, (physically in a lot of pain or emotional pain) I wish heaven for her sooner rather than later. 

I am the only caregiver 95% of the time.  There is no family nearby and the medicare provided helpers are not really good helpers at all.  In fact the current helper is mentally disabled herself.  I literally have to give her step by step instructions on how to do things.  NOT THE KIND OF HELP WE NEED RIGHT NOW..  I wish Barb were closer. The one thing I think about often is how it would be great ot have so many family members around to help out and just be emotional support.   People don't realize how important that is....

Anyway, I'd appreciate your prayers and hope you all have a good day.

Blessings to all.

 

www.claudiasfamily.com

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Ohamydear - Just read your post and wanted to let you know something you have probably already heard before - First rule of being a caregiver is to be sure to take care of yourself.  You need to recharge your spirit so that you can provide the care your friend needs.  One way might be to put on music that lifts your spirits, as it can be a background noise that may lead to the two of you singing and praising God - as that is the source of recharging yourself.  I don't get on the boards very often, but coming here and reading how others are doing helps me feel connected to others that I'm not able to be with physically...which is my way of sharing the small burden I carry...being caregiver for my husband.  I hope you have more high days the low.  Take care!

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Hello everyone,

 This is my first post here so I am not sure if this is even the correct way to post but here goes... I am a fairly new caregiver of my wife who was diagnosed with Huntington's Disease about 5 years ago. She is still mobile but is rapidly approaching the point where I am going to have to ask her to give up her driving. She has already lost so much of her abilities to this disease including the ability to recognize that her driving is no longer safe. It tears my heart out when I even think about it even though I know it needs to be done for her safety as well as others on the road. That is just the tip of the iceburg...I am having trouble coping with working all day, coming home to take up the home responsibilities as well as taking care of her. I know it sounds like I am doing a lot of whining, but I am so weary and I miss my mate and being able to talk to her. Now she hears me but doesn't really understand what I am saying. Sorry...I am having trouble with even writing this down.

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4everjoeysmom

Dear SoSad, I am so sorry for the pain you are suffering for your wife and for yourself through her illness and decline.  You are not whining.  You are overwhelmed with the changes, the caregiving, and the overall situation.  It's a difficult place to be.  My mother is suffering similarly with her husband who recently declined very rapidly with his Alzheimer's.  I was with her when she confronted him about his driving and it was a very difficult moment for both of them.  He was very angry and she was very upset.  Giving up driving is a harsh reality that one's independence is being stripped away.  In my former career I talked with many family members over the years who had to confront loved ones and take away driving priviledges for loss of sight and various issues.  It is a battle for every single person that comes to this crossroads, and you are very wise to reach out for encouragement and support, because it's a hard burdon to carry alone.  You know what must be done, and you will follow through, but you will suffer for a time for the backlash in the obvious ways it will affect your wife.  My thoughts and prayers are with you as you face this huge step.

Is there a possibility of hiring a part time caregiver, cook, housekeeper, say a few days a week in the afternoons, to come and give you a hand so that it isn't so overwhelming for you every day?  It doesn't have to be a big deal, really.  You could just explain that you need some help and would like to make certain that your wife feels she can rest when needed and have someone there to help with chores, cooking, laundry and so forth.  Even healthy people hire part time housekeepers when the mix of work and home are overwhelming.  What do you think about the idea?

Know that folks here care and that you can come and post, vent, seek ideas and comfort and so forth as often as you need and want.  Blessings and may extra heaping doses of courage and comfort find you this day and forward, Claudia

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Sosad1 - You most definitely are not whinning.  Being a caregiver is a task that can become overwhelming.  The first golden rule for a caregiver is to be sure to take care of themselves - otherwise you won't be able to provide care for the one you love so much.  In my area, their are resources that provide what is called respite caregivers, they come into the home for about 4 hours as needed and allow the caregiver time to take care of things away from the home while they watch the loved one, or more importantly, a time for the caregiver to be able to relax and not be jumping up to provide care for their loved one.  My mom had this when she was taking care of my dad.....and I'm planning on making use of it when the time comes that I'll need assistance with my husband (he has Parkinson's).  I am fortunate that he is very aware of the times he isn't up to driving and asks me to take the wheel as I had dreaded having to tell him it was time to give that up....it is such a sign of independence.  I do hope as you talk to your wife that you will be able to find the right words to help her understand that you are asking her to give up driving.  Please visit this site anytime and share your feelings - it's a very safe and supportive place to come.  Take care!

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To Claudia and Sosad 1 - I just glanced at your profiles and noticed you almost share the same birthdate and that Sosad1 is just about my age.  Just wanted to share this with you both - not sure why, but it felt like a connection of sorts.  Take care!

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4everjoeysmom

Thanks for sharing that, Mofirefly.  I hadn't noticed.

I am praying for you SoSad...

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Sosad,

You are not whining. You are expressing how you feel and that's ok, especially here. Caregiving is hard. It is hard to watch your loved one suffer, it is hard to manage your own emotions, and it is REALLY hard to work full time and make sure you are doing everything you need to do. I took care of my husband on and off for about 5 years before he died. Sometimes it required full care, sometimes he was in the hospital and sometimes he could handle things himself. I worked full time (or tried to) through it all. I was lucky to have a great staff and a work situation where I could use my sick time for family.

The worry and stress wears you down and I'm not sure anyone who hasn't been in that situation can fully understand. I found that out when I expressed how I was feeling to stepkids and it turned into an ugly situation. So I would suggest talking to people who have been where you are or a counselor. It's very important that care givers have breaks to regroup and take a little time for themselves, so I hope you are able to do that.

Mary Jo

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hello everyone,

   Many thanks for the many kind words and encouragement.  I work full time and being too young for retirement (56) as well as having two daughters that are at risk with the disease leaves very little time for myself much less taking respite time off. I have talked to some of the local organizations about having someone come in but I have found that Huntington's disease don't  qualify for a lot of the things that alzhiemer patients do but she did manage to get  long term disability under social security. My oldest daughter helps as much as she can and the youngest is having difficulty accepting the fact that her mother isn't there for her and can't give her the guidance that other teenage's mother do. In fact, a lot of her peers give her a lot of grief over why her mother acts so weird (chorea) so she is ashamed of her mother. So she spends a lot of time away from home and is giving me fits. Sadly, I read that most HD families usually split and I can see that happening now.

Our last visit to the neurologist showed that she is losing her cognative abilities, so I guess that the intermediate stages of the disease is starting. I can't seem to find anyone willing to tell me at what stage she is in..I guess it really doesn't matter.

We are still a ways off before she will need constant companionship and I call her everyday from work to check up on her. It gets to be a little nervewracking when it takes her 8 or 9 rings to answer the phone..I worry that she has fallen and hurt herself since she is getting quite wobbly in the balance area.

I have to go...too much at one time. thanks again for the support.

 

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Sosad - One suggestion about the long time it takes for her to answer the phone - do you have a cordless phone that she could put in a pocket of her slacks or a blouse or whatever and that way have the phone with her no matter where she's at.  Hoping that you are able to get thru each day with some moments of peace while on this wild ride.  Take care!

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I am new to this forum, posted my Dad's story in a new post, I am his sole caregiver, how does everyone do it? how can you survive? how do you deal with the pain of not knowing, the fear of seeing him suffer?  I am also newly pregnant after 6 years of battle with infertility....all this is making me live in a constant depression.

Sorry I am dumping all my feelings in you...Sending many prayers and hugs to all that needed, I have read many of the posts and your stories all talk about courage and strenght.  I just wish I didn't feel so alone

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she has a cordless phone but the problem is that for some reason she will just sit and not answer it. All the sites about HD say that is one of the areas that is lost is the ability to "self start"..it is like she has lost her motivation to do anything. She does the same thing when the car is parked...she just sits there until you ask if she is going to get out.

Today was a really rough emotional day for her, my youngest, in her way of distancing herself from the problem, told her that she wasn't going to come home for lunch anymore and that the crying she was doing was upsetting her and effecting her at school. Cathey called me at work very upset and crying uncontrolable and I was unable to go home...talk about feeling helpless! I guess that was my wakeup call to get busy and ask some of her sunday school members if they would check up on her periodically thruout the day. I am not sure what I am going to do with the daughter because she is so hardheaded and won't listen to any suggestions I give, so I guess I am going to just have to be available to pick up the pieces when she self destructs. My mind is so overloaded that it feels like it is pulsing...maybe tomorrow will be a better day and Cathey won't be so compulsive or emotional.

Thanks for caring.

 

 

 

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Karolynca     I am also new to this group but I can tell you that I take it one day at a time and when it gets rough I take it one hour at a time....right now, I am taking it one minute at a time and with lots of support and finding a place to talk about the difficulties of the journey we are taking.

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Thanks so much sosad for answering, it's difficult to not think ahead, focusing only on one day at a time....however I guess you are right...we need to care for ourselves if we want to care for those we love.

 

 

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