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I just don't have the energy or desire to be friendly.
Internal Administrator
Posted: Tuesday, January 17, 2012 4:59 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: shearbear

I don't have the desire to be friendly and this might sound unusual but most all of the people I know are having problems and they don't want to hear about my problems but I should listen to their problems. Is it me? I just don't want to be friendly with ANYONE anymore. I need to be left alone. Just leave me alone because I have no desire to listen to other peoples problems.
I talked to my DH last night. Already his memories are disappearing and he is confused about most everything of our past. He makes up stories and gets events of his previous marriage intermingled with our times together..and we have been together for 37 years. My husband is the only friend I have and he is leaving me by bits and pieces and sometimes its chunks at a time.
I don't know of anything worse than the person who you love the most, disappearing on you and it is heart wrenching.
So much drama in my life right now, I just can't handle anymore. I have nothing to give to no one. I have all these feelings bombarding me. I just want to be left alone and I don't want to be around people.
I am not going to ask if this is normal or not because there is nothing normal in my life these days.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: SmileDaily

Shearbear, {{{hugs}}}. I think my first post about my DH said "I feel like I lost my best friend".

I'm still trying to get DH to the doctor's for a diagnosis. I would be very surprised if nothing was wrong. I have received too much help from these boards.

I watch DH struggling to remember things. He talks alot about the past. Doesn't get his previous marriage or relationships mixed up with ours yet. But he is starting to talk about them more and more. Talking about intimate details that I would just assume never hear about. I know he can't help it. It's the disease - the stranger that has entered our relationship. And knowing, it's the disease not him doesn't keep it from hurting. We have been married 23 years - for better or for worse. This is definately the worse part.

Do you attend church? - if so, talk to your minister. Our minister has been a big help to me. You can also consider counseling for yourself. This is a lot to deal with and handle by ourselves. What you are feeling is normal. Living with this disease is NOT normal, by any stretch of the imagination.

Venting here is good, our friends that have not dealt with this are not capable of understanding. This is true even if they have cared for a parent with dementia. I look after another LO and I had no idea how difficult it would be with DH. I say this and my journey has just started.

{{{hugs}}} - we both need them.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Carolxxoo

Just found these chat rooms late last night. I understand. Right now I'm all about anger.And isolating. Knowing few friends " get it" and tired of being tired, lonely, stuck ( stuck's big) and denying to myself that my 69 yr old husband can " really" not help it.Diagnosed Vascular and A. D.last year and on the patch. Not too much memory loss , mostly cognitive mixed with sleeping/ sitting with no desire to do for himself including bathing/brushing teeth.
Beautiful Sunday 7am and all I think of is , here we go again....
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Jim Broede

You need more than friendliness. You need to be in love. Genuinely in love. With your husband. Especially when life is not going smoothly. You have to be consumed by love. Not by misery. That makes the difference. That gives you energy. Sustenance. --Jim
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: brightwings

Are there any alzheimer's association support groups in your area?
Sometimes it's good to be around others dealing with the same emotional and practical issues--with a group leader who understands also.

Some groups offer supervised care for our LO's while the group meets... Some don't. You can ask your local Alz association for groups specifically for spouses.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Starling

I call it hibernating. I do some of it too.

Also, you seem to think that the only way you can be around people is if you listen to THEIR problems. Is there no one that you know that will listen to YOURS?

This is a safe place to vent. Keep coming here.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: LCB

shearbear, not feeling friendly does not make you a bad person.

It takes time to process grief and anger, and get to a place of acceptance. What pisses me off about this is that it can't just be done once. After getting okay one day, the next day you have to do it all over again.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: jfkoc

I had a friend who left our reunion early. When some one asked where she was another friend said that her message to all was "I ran out of nice".

Don't you love it!
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: shearbear

My husband is a screamer and yells. He denies this when I bring it up to him but it is true. I am not a person who can handle that. I keep on having talks with him here lately, he denies doing this but the night before last I told him that if he continues this, I can't live with it anymore. He did not say one word to me yesterday but I hid in bedroom and today, he said lets go out and eat so we will grab a hamburger some place. I could live with him but his emotional outbursts and name calling has worn me down. I have nothing left in me. I love him but I don't feel these overwhelming feelings of love when I am called every name in the book. He tells me he doesn't treat me this way but he does. Of course, most of the time he denies there is something wrong with him but he can't remember how old he is or his birth date. He doesn't know what day of the week it is and sometimes he can read the clock and other times he can't.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: jfkoc

My husband is 81 and I am grateful that he is not 60. I flat out do not know what I would do with 20 years of this staring me in the face.

My hat is off to you young people and my heart is with you.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: RevSasha

quote:
shearbear

As caregivers we go through the grieving process daily. One of the stages of grief is anger. We all get there. There are days when I'm just plain mad at the world. Just had to tell my mother, who lives with us, (she's not the patient) that I just could not talk to her right now. She insisted on running her crap on me again, I could no longer hold my tongue told her to shut up and get the hell out of my house. I "ran out of nice" with her.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Carolxxoo

Your right...I'm out of nice and no longer "in love". That person isn't there to be in love with. Unfortunatly, support groups here all have spouses in late 80's most stage 5-6, and thats a real disconnect for me except for one gal, who I've become close to. Her hubby who was 80, died last week. She is only 63.
Believe me I've done the research etc. It just sucks. Thankfully he doesn't yell . He sits.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Caroliso

quote:
I had a friend who left our reunion early. When some one asked where she was another friend said that her message to all was "I ran out of nice".



Okay, this goes in the journal. I love it and want to remember it.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Jim Broede

Maybe it’s time to consider placement in assisted living or a nursing home, Shearbear. Some degree of separation. That may help you better handle the situation. I was married to my dear Jeanne for 38 years. Similar to the length of your marriage. Jeanne spent the last 38 months of her life in a nursing home. I was still there. Daily. Didn’t miss a day. But I went home at night. Came back refreshed the next day. I was able to cope. And to deal with Jeanne’s belligerence. With good vibes. All of the time. Because I was rested. You can learn to do it, too. The good vibes brought positive results. Jeanne became quite loveable again. Don’t know if it’ll work for your husband. But it’s worth a try. If you are going to continue to love your husband, you need to change the scenario/approach. And you also have to love yourself. And take care of yourself. So that you can love him. Without being cranky. Even when he’s cranky. You owe it to yourself. And you owe it to him. Just as I owed it to myself. And owed it to Jeanne. You can make it work, Shearbear. For you. For your husband. Sometimes love has to be well-managed. You can still salvage something from this marriage. Despite Alzheimer’s. But it’s gonna take some ingenuity. And special understanding. Especially on your part. Don’t give up. --Jim
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: A.ALLEN

Dear Shearbear-I had to chuckle w/ "Smelled Like a Goat"-You still have a sense of HUMOUR! I am with JIM-YOU need time-days even for YOU! Here is some interesting Facts on caregiving-(just participated in a church caregivers retreat!) 90% of all caregivers have emotional-or physical issues while taking care of thier LO'S,and 50% will have a Stroke,Heart Attack,major mental issues,or some other health problems that prohibits them caring for that loved one! You need outside support dear girl! Find it in your church-call the ALZ.ASSOC.local and find a group-or a facilitator that would talk or meet you one to one(I do this often when the caregiver can not get away for my support groups)Do you like to read? IF so find-time alone to get away from him to read your books-listen to relaxing music-watch movies in another room if he doesn't want to join you? DO things for YOU! OFTEN!! Is he on medication? If so when was it evaluated? Hugs-come here-we all will help!! YOU are not alone!
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Cathy J. M.

Try not to tell your husband the distressing things he does. It doesn't help either one of you. And don't assume that you can't change; learning to relate well to someone with Alzheimer's pretty much demands that we all change to some extent. We can do it but it takes practice and time.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: shearbear

We were going to get a bite to eat today. He got in the car and he smelled like a goat. I put my window down but it is cold outside. I told him I just can't stand the smell. He told me he took a shower this morning (this did not happen) and I turned the car around and I told him I am sorry but I just can't stand his smell. He walked into bedroom and into bathroom and he took a shower. He put on a clean shirt. Wow..that is awesome. I told him lets go eat and he came along and I thanked him. I might not have a good bed side manner but I feel so broken down, I just don't have allot of nice left in me. He did not yell at me for the last two days, this hasn't occured in six months or so. He knows I am broken down. I try not to become angry at him when he does things out of the ordinary..but quit frankly, it is hard for me. I sometimes feel I am not geared for this. It is not that I don't love him, it is just I am tired of this, it has been going on for 5 years but it was in the mild range up unto last November. I think I need a break. I just feel so sorry for him. It is sad on me to see these changes in him. Pick your emotion.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by M.Janell:

My precious daughter has been with me since last November to help me take care of her dadwho is 76 with vascular dementia. However over the last few months she has kind of taken over the household. I let her know how I felt last week and she got all huffy and went home. Believe it or not, things have gotten easier to deal with around here since her departure.


Wow, I'd love for someone to take over my household! Make the menus, organize the kitchen, do the cleaning, do the shopping, do the cooking, arrange for repairs and maintenance, check the tires....change the sheets....
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: C.Traill

Shearbear,
I hope the Samaritan hospital you go to is connected to the Alzheimer Institute located on Wiletta or Wilmetta ... I can't remember which spelling behind Good Sam. They have been very helpful to my husband and I. 11 years with alz.
Bless you.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Jim Broede

Starling:

I’ve read your post with a smile. And understanding. But with a touch of sadness, too. I think it’s possible to stay in love for virtually the entirety of a marriage. Even a long marriage. And to even fall in love again in one’s 70s. I’m really an adult. Chronologically. Maybe one that hasn’t fully grown up yet. Still living my romantic idealist dreams. --Jim
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: shearbear

Thank you all for valuable information.

Obviously, I can see and you can see the pent up resentment and anger I have. Jim I love your words, the truth.
I will be taking my husband to Phoenix to the Good Samartan Hospital, for a full evaluation.

To be honest with you, this disease is one that most people don't want to be bothered with.
I just want to be left alone and I will be fine..I will contiue to post here and read your posts. I will take Jim's advice and just try to love me and love my husband.

I will just take one step at a time, one day at a time, do no more..and no less, just nothing but my best.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Starling

Jim, I've been married to my husband for 50 years. I haven't been in love with him for the last 49. I've loved him, but being in love isn't exactly grown up, so that hasn't been what has been going on.

And I don't go to see him every day. I'm getting ready for surgery. They have sickness at his nursing home, and I've warned the nursing staff that I'm staying away until after the surgery. But even before that I did not go every day. I'm not at all sure that going every day is healthy for a caregiver who is trying to put their life back in order.

Everyone is different. I've seen your every day suggestion before and have said nothing. I can tell it worked for you. It would not have worked for me. So I needed to explain that what works for one person might be exactly what the next one does not need to be doing.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: M.Janell

quote:
Originally posted by RevSasha:
quote:
shearbear

As caregivers we go through the grieving process daily. One of the stages of grief is anger. We all get there. There are days when I'm just plain mad at the world. Just had to tell my mother, who lives with us, (she's not the patient) that I just could not talk to her right now. She insisted on running her crap on me again, I could no longer hold my tongue told her to shut up and get the hell out of my house. I "ran out of nice" with her.


Well I guess that is what happened to me last week. "I just ran out of nice" My precious daughter has been with me since last November to help me take care of her dadwho is 76 with vascular dementia. However over the last few months she has kind of taken over the household. I let her know how I felt last week and she got all huffy and went home. Believe it or not, things have gotten easier to deal with around here since her departure.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: RevSasha

Shearbear,

I have gotten a lot of comfort from this thread. I applaud your transparency. I happen to be one of the people who is still madly in love with my husband, but we had that all goin' on before. And we still have our days of one or the other of us running out of "nice." That's such a great phrase. I'm going to hold on to that one.

Blessed be. I know we will connect here again.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: shearbear

I think we all do our best. What applies to me, might apply to you. If you feel sad for someone because they are not in love with their mate, that person should not feel like there is something wrong with them. There might be circumstances involved you don't know. This person might have been happy regardless.

I think people take their own paths in life due to the circumstances.

None of us should feel less than ..feel as though we are not doing enough. We all are different but with same needs and when the need to be loved, the need to nutured, the need to be protected, the need to talk and laugh is no longer met, and we feel we are just existing and we are now the care-givers, which inquires take care of a 4 year old's needs, it can be very taxing. We all will react differently but we all have the same hurts, same desires, same anger, the same drepession and anxiety. We all do it differently because it is what works for us. I can throw a ball playing a game of bowling and it might not be the correct technique but the ball lands down the middle and I throw a strike.
What we all have together is we are care-givers. We yell, we scream, we cry, we feel weak, we feel vulnerable, we feel depressed and others don't, we feel anger and not understood, we feel overwhelmed, that is how care-givers feel and sometimes we have our limits, just like everyone else. We never knew our role was going to change, to having a fun and enjoyable life to one that is now watching our loved one change into someone who is a stranger and we now have to wear all these hats. It is a thankless job and one most people don't understand. I congrat you all for keeping up your journey and being on this message board is a big huge step. And what anyone thinks of me is none of my business. I do all I can to the best of my ability. To form opinions based on one or two paragraphs is not right.
right. We are much more than what we write here.
A big hand to all of you that are on this message board. For me it was scary and i lurked for most of the time.
Nameste,
Shar
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Cathy J. M.

I've fallen in and out of love with my partner all along -- but luckily, now I seem to love her more every day and I often even feel that "wow, I'm in love with her!" thrill. I know this is very lucky!

I think a lot of what works for a caregiver depends on what "putting your life back together" means to the individual person. For some, being with the spouse or partner is essential to the feeling of a "together" life -- and for others, doing other things is much more important. We all just have to feel our way.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Carolxxoo

Shar, namaste back to you. Thanks for your post. Hits the nail on the head. Been to Prescott for a week with 5 women who flew in from everywhere to stay in an A frame built on the side of that mountain,great place to live. xx
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: jfkoc

not everyone has the option to place a loved one outside the home or afford to bring care in...I think we whould be sensative to that fact.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: shearbear

jfkoc,

I agree with you. Let us all be aware to the fact that we all are on different incomes. Some of the people here can afford daycare or an aid, to others it simply is not an option.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Snorky

Forgive my stupidity but what does namaste mean?

I can only say my true feelings are such sadness that the man I have loved so much is not here for us in the last years of our life. I look at him some times and he's still very handsome (of course I would say that!) but can't communicate about our life together. There is anger there on my part, but I have accepted a lot more what has happened than a year ago, so I guess I am progressing, but still hate it, as we all do.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: shearbear

Nameste simply means when I recognize my Divine nature and you recognize your Divine nature, we know that we are One.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Starling

I don't think that being "in love" means that the emotion is greater than "loving" someone. I think that is one of the things that people misunderstand.

Loving lasts. It ebbs and flows. Becomes stronger and more apparent some of the time, and then less apparent, but not necessarily less strong and important.

Being in love is a flash in the pan. Gone with the wind. It either turns into loving or it dies out.

And I also think that we don't all use the same meanings for the same words. <grin> You don't stick around for 50 years without love.

One more thing. When it becomes necessary EVERYONE will need either placement or some kind of help. There are ways to pay for those things even if you can't private pay. You won't find the ways to pay for it if you don't look into what is out there.

And if the caregiver insists on doing it all on her own and dies first, what happens then?
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: brightwings

On the caregivers forum, I just brought a thread "Support Available by State" to the top.

Many states offer subsidized daycare or some hours of in home aides for those who cannot afford to bring care in.

Also google PACE elder care
to see if there are any Pace programs in your area (Pace provides daycare, aides, centralized medical and dental. It's designed to help keep elderly--over 62--at home.)

Since this disease can last so long, it's worthwhile to put names on waiting list.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: LCB

I want to add my thanks for doing this thread. Most thought-provoking.
Anonymous
Posted: Tuesday, January 17, 2012 4:59 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by shearbear:
jfkoc,

I agree with you. Let us all be aware to the fact that we all are on different incomes. Some of the people here can afford daycare or an aid, to others it simply is not an option.


That's true. Many states have cut Medicaid-funded in-home care, or never had it to start with -- and it's all too easy to have a little too much income to qualify for help with care, yet not enough to pay for more than a couple of hours.

I have Medicaid-funded in-home care for 27.5 hours a week, and pay for another 8 to 10 and subsidize the caregiver's Medicaid pay -- but I'm also sinking into debt and struggle with thoughts like "If I take a half-hour walk, it's costing me $5 for the caregiver plus lost pay -- can I afford a $15-20 walk today?

But if I placed my partner, my situation wouldn't be any better financially. I'd be spending a lot on gas, losing a lot of income hours, and more distracted by worry. Now if something goes wrong, I'm 100 feet away since I work in another building at home.

We just all have to do what we can with what's available, and do our best to be happy with it too.
 
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