Now Mom's gone, what do I do?

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Now Mom's gone, what do I do?

Postby momppsp » Mon Jan 21, 2008 9:22 am

Not sure where to post this, but, I feel lost all of a sudden. For over 20 years I was in radio broadcast. Ten years ago, I retired and started going 70 miles 3 times a week to help with Dad and Mom. Even after Dad passed 4 years ago, I still went the same distance for Mom. Now that I don't have any parents left, my schedule has been turned up side down. I'm starting to question my life and where to go. We do own a business but I can only help so much due to bone problems and don't really want to stay there all day doing nothing. I have housework and yard work starting next month, but, I feel so lost. Here it is 8:15am and instead of getting dressed to go see Mom, I'm still in my robe, drinking coffee, and writing this.
I'm not sure the true reality has hit because I have no tears. I wouldn't want Mom back the way she was but my heart says I would.

How are you guys dealing with the change of schedule? What do you do with yourself?
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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mom is gone

Postby ruthkri » Mon Jan 21, 2008 12:08 pm

My dearest Deborah, Please know that it exactly the same with me. I still haven't cried and keep qestioning my self with the same questions. I am not unhappy but still feel somewhat in limbo and feel that this will not pass. I have tried to push myself to stay occupied doing dumb things but have also chosen to make an effort to have a disfuntional routine (Ha!)
Just remeber we spent so much time with forced routine for so long. Now we eat when we want to, get up when we want to and possible just veg
out also. I have been told that this is normal. I idid not attend grief counseling but once and I felt I did not need anyone to explain stages of grief. Both of us , as well as othersers here on the forum have garnered a support group and that helps. I have felt that my childtren have gathered around me with such love and attention and yet their lives are fulll and at times I have stopped trying to make any effort to do anyhting. Yet I have turned to others at church who just are loving , compassionate and not over sensitive. I have joined a lot of discussion groups on things other than personal and now I have chosen to become a lay care minister with our Church reaching out to caregivers. We are a strange lot, think to much, trying to understand but suddenly I just accept. You will ease into something new but it does take making an effort. I am still very involved with the forum because if I can help someone and share like I am with you perhaps trying to help heal someone else I will start healing myself. I do not at this time feel that my feelings will ever change. I sometimes think I am a little nuts because I do not think my wonderful husband is really dead- just his wasted body is gone but his spirit is always with me. Please write to me privately if you wish to or even call. We cannot obsess about the situation we are in we just are here trying to make some sense of how to spend the rest of our lives. And please know that we did enough crying before hand and grieved for so long that we are not alone in what you and I seem to feel. We all have followed each other's journey for so long we really do feel close to one another. With Love, Ruth
wife of Bud who received his golden wings March 4, 2007
And now abideth Faith, Hope and Love and the greatest
of these is Love
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Postby Robin » Mon Jan 21, 2008 12:24 pm

Deborah,

I suggest you find out about joining a grief group for yourself. Even though your family never signed up for hospice, a hospice organization will likely still let you participate in their grief group.

Also, I suggest you start a local PSP support group in your area. You will find that you will receive far more rewards from helping others than you give. The stars of our local group have always been those who have lost their loved ones.

Robin
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Postby immacula » Mon Jan 21, 2008 8:57 pm

HI dear friends,

Someone had previously asked that we could have a separate grief thread but nothing has come of it which is unfortuante as there are so many of us who would like to share our thoughts with others who are in the same way.

However Deborah you are being normal and each one goes through their grief in different ways. Just like Ruth I did not go to a grief group but that was my choice and I have not cried hard as yet either. One dear friend advised me to watch a sad movie so I could cry hard and get it out of my system. Still haven't but will one day. I have weepy moments but I am a very strong person and I toughen right up again. Don't know why because I am normally an emotional person.

Fortunately I was able to be off work for the summer and returned to school in Sept and I have found that being focused to get up every morning and being needed by dhilcren has been a blessing for me as it will take some time to get use to not being in a formal routine you have been for some time. I am also mentoring some dear new friends I met here on the forum a year ago and the husband has PSP who is in the same age group as John was. I love giving back to them that I have experienced over the last 4 years.

I so miss the presence of John and I have pictures of him in each room as I need to continue to talk to him and I take comfort in this. I am trying to move on but all in time.

So here we are on the backporch and we will be here as always for each other.....Donna
Donna...wife of John...b.June 3, 1942, died June 16, 2007
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Postby Bonkers » Tue Jan 22, 2008 10:59 am

Everyone grieves in their own way. Do you feel okay being in your robe and not getting around? If it feels okay--then that is what you need to do. If you are feeling bad about still being in your robe---then it is NOT okay to be in your robe. So get dressed --- make yourself get changed. I had someone tell me one time---if you feel lost and don't know what to do with yourself---scramble some eggs. You don't have to eat them---just scramble them up. I thought that was the weirdest advice I had ever gotten---but you know it works. Put on some sweats or jeans, wash your face and go scramble some eggs.

It's been two and half years since I lost my Dad. I still have times when I feel so lost and all alone without my Dad-- but I still think about scrambling those eggs and I smile. I know my Dad would have chuckled at me about the eggs and he would have eaten them to make me feel useful! So this might be the weirdest advice you've ever gotten -- but put some jeans on and go scramble some eggs. You don't have to eat them---just scramble them and give them away to the birds or the dogs or the cats or the garbage disposal.

And also---one more added thought here--do not rush the grief stage--everyone has their own time frame. You are entitled to as much time as it takes to get through your grief as you need. There is no right or wrong time frame---it is more about how you feel. Everyone grieves in their own way and own time. We ourselves do not necessarily know when we've reached the other side of grief until we are actually through it. Then you know how you feel about it. So give yourself time to heal and rest.

I long to have my Dad back if he could be my Dad again and throw a baseball or laugh with me---but to ask for my DAd back inside his PSP ravaged body---no--I wouldn't ask that for him no matter how lonely I am now. It is just I have to listen for Dad inside my heart and I have him there forever.
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grief support

Postby ruthkri » Tue Jan 22, 2008 12:10 pm

Dear All, I so agree with Donna. We should have a separate , private grief thread. After I read Deborah's posting I felt better because I realized that she was actually feeling the same things that I was feeling. It actually made me feel better in knowing that I was not nuts in some of my feelings. And also others who will face the same as we should not have to really know and anticipate how they would feel because everyone is different and fear of the unknown is a waste of energy. Our feelings too are private and only understood by others in the same place. RuthKri
wife of Bud who received his golden wings March 4, 2007
And now abideth Faith, Hope and Love and the greatest
of these is Love
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grief

Postby Jeanie Kelley » Tue Jan 22, 2008 12:27 pm

Yes, we all grieve differently. I cried daily for 11 weeks, everyday, you know the snot running down your face crying. It helped that I live in a community that has many widows. One sweet friend would call and just let me cry and tell me it was OK.
It has been 6 months now and still I cry at unexpected times. But I have survived our anniversary, Thanksgiving, Christmas and now Valentine's Day is approaching. We met on a blind date on Valentine's Day 52 years ago.
What has helped the most is of course, my church and church friends, the hospice friends, doing pottery and most of all volunteering. I am tutoring a kindergartner one afternoon a week and will begin working as a Court Appointed Advocate to a family of children who have been removed from their home.

So, sweet friend, stay as busy as possible but on those days when you just want to pull the covers over your head, do it. But the next day make yourself get up and so something for someone else.

Also, remember God has a plan for us and we must be open to His plan. I know this is what Tom would want me to do,
Hugs, Jeanie
Jeanie Kelley
Tom passed away on June 29th, 2007, brain autopsy said PSP and CBD.
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Postby momppsp » Tue Jan 22, 2008 9:43 pm

I would love to have a separate thread. That's why I didn't know where to post.
With everything that's happend since the beginning of the year, my resistances is weak and now I'm down with the flu like, 102 fever, chills, aches, headaches.
I will get up, God willing, tomorrow, fix some eggs, and go to work.

Just wanted to post quick and say thanks, now, I'm going back to lay down.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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Postby Bonkers » Wed Jan 23, 2008 9:52 am

Oh my gosh--don't do eggs when you have the flu!!!!! There is a lot of flus going around here in this area too---and with the stress you've had---flu would naturally take hold!!! So be sure and give yourself extra time and extra pampering--- you deserve it!!!!

I can't imagine facing eggs after the flu!!!! Oh my gosh!!!! Keep us posted on how you are feeling. We are hoping for a quick recovery from the flu for you!!!!!
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Postby momppsp » Thu Jan 24, 2008 9:35 am

No I didn't do eggs. It has now gone to the sinuses and feel like crap. I had a bad night last night. I was going over everything in my head for the last year and the last days of Moms life. I now realize that I'm depressed. I have had to holed it together for so long that I have formed a tough shell and it won't break. I just kept going over the last days that I'm the one that pulled my sister away from mom when she was crying that "mom doesn't deserve this" and said no she doesn't but she can still hear you. I'm the on that put soft religious music in her ears and sprayed lavender scent over Mom and I'm the one that held my little sister at Mom's last breath as she sobbed. PSP has made me a person that I don't like. Tough, rude, mean and just not fun to be around. I feel that what is my purpose now? Yes I have a husband but now I feel that I can't be the person I once was. It's been a long 10 years and I'm questioning everything.I even questioned my husband if he would be there for me if something like this happens to me. that's terrible. His face dropped when I asked him. He doesn't deserve that.
Maybe i've come back to the forum to soon. It really saddens me to read post that I just say "yep, been there, done that." So many new people, so many sufferers.
I don't mean for this do be a counseling session but it helps. Thanks for listening.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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mom is gone

Postby ruthkri » Thu Jan 24, 2008 11:42 am

Dearest Deborah, We are as one and I say just let go . You cannot change what has happened but you can try to force yourself to get through this time . You do not need to scramble eggs but you do need to make a cake, get your nails done, anything to change the mood. It will take a concerted effort to change your routine. Be disfunctional if you have to but just do something. I think you do need to be on some sort of anti-depression med, I know it made such a difference in my moods. .Then too, you have been sick. So I relate to that and try old fashioned remedies -chicken soup , hot biscuits and honey, ginger tea.
And keep on venting, try lots of music, whatever as long as you recognize that you are trying something different. I still can't stop remembering the last hours but at least I can tell myself when this happens what did I do to stop thinking about it and then my thoughts try to remember something else. But that is where I have come to, you will find your own ways. So ramble on and the sun will shine soon and do get something to take even if it is tylenol HA! Love You, Ruth
wife of Bud who received his golden wings March 4, 2007
And now abideth Faith, Hope and Love and the greatest
of these is Love
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hi

Postby Dana » Tue Jan 29, 2008 12:14 am

Hi there,

Haven't written or checked in here for a while.

It was a year Thanksgiving that my husband Charles passed away.
Some of you may remember me and there are a few here that were not on the forum the years that I was.

I have kept busy helping with a church outreach clothing closet, going to a gym to do cardio exercise, running, running , and more running.

Thought things were going great and I would miss most of the saddness that I had read about and wham o in November it hit me.

Didn't really know about the dreams, lonely feelings, being the ":single" woman, being able to talk to someone about everything, and all the other things I didn't really realize while caretaking that I would miss.

I often thought during the "bad" times and times I was feeling sorry for myself what it would be like to be able to go places, do things, sleep the nite through. Never did I think I would miss doing all those little and big chores that were included in caretaking.

Yes, I miss Charles and would love to be able to grow older with him if he were in better health and able to enjoy his life.

The only thing I know to fight the grief now is to remember how hard it was for him to survive in the shape he was in. That really helps me when my emotions run riot.

I have never gone to a grief site and have really never felt the need much as I am usually a laid back person that would rather laugh than be rich.

Maybe the subject on this page could encourage the other exPSP caretakers to support one another. I feel this is just another step in the PSP experience too.

Well, so much for my ten cents worth.

Love to you all,
Dana
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grief group

Postby ruthkri » Tue Jan 29, 2008 11:52 pm

HI You All, Well enough of us want this group so let's start it. Someone tell me how!! We all seem to feel the same way and having been doers for so many years, we all seem to have tried giving of ourselves somewhere and yet the same lonesome heart seems to be present in all of us so anyone have some ideas of how we can get some new pleasures? What shall we call ourselves? Maybe we can have a reunion somewhere when the weather and the economy picks up. Come on you guys lets stop thinking and start doing. Ruth
wife of Bud who received his golden wings March 4, 2007
And now abideth Faith, Hope and Love and the greatest
of these is Love
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Hi there

Postby les » Thu Feb 21, 2008 3:30 pm

It is Lesley. For those of you who don't know, my mom died from PSP on January 29th, 2008. I was super close to my mom throughout my whole entire life. When she was well, I talked to her everyday on the phone. When she went in the nursing home, I saw her about every second day for two years. I loved my mom so very much.

I feel empty inside like there is a big void and lost right now. I am on antidepressants but sometimes I forget to take them. I am seeing a doctor and will see him tomorrow to talk about all of this grief stuff.

I feel this is the lowest part of my life and sometimes I just feel like there is no hope.

My aunt told me I have lots of things to look forward to.

I feel like I am so overprotective now of my daughter and I worry all the time that the rest of my family is going to abandon me or something (I guess that's sort of wierd).

Any advice,
Lesley
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Grief

Postby Dana » Thu Feb 21, 2008 10:17 pm

HI there,

Going through the stages of grief is certainly not the easiest thing to do .

Depression is something that happens often and you may need medication to help you recover from the shock of loss. It is so hard when you lose someone and it makes you wonder just what is going to happen next.

I know that my life has had more ups and downs and unexpected trials since I lost my husband. When I was taking care of him I could ignore some of the trivial things that get on ones nerves as I was focused on his needs.

I hope this will help a little and know that we are here to listen and try and help.

LOL Dana
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Thanks Dana

Postby les » Thu Feb 21, 2008 10:29 pm

Thank you Dana for being understanding and for your kind words.

I just never felt so down like I do now but I am going to see my doctor tomorrow at 3:00. I just wonder what the future holds, is my family going to stay together.

I keep phoning my brothers. I am scared to get anyone mad at me. I guess I feel so insecure or something, I don't really know.

I thought I was prepared for my mom passing away but I wasn't, it is so final. The whole last seven years, all the worrying. I wish I would have lived more in the moment and made things more fun for my mom when she was sick. Like I wish I would have read to her (didn't do that), I wish I would have played music for her (didn't do that) instead I was scared and sad all the time.

My dad and I did take her to movies though and concerts and stuff. I know we did do things that were good.

Anyways, all this grief is tied in to with a lost relationship (the guy dumped me), so it's like double grief, but mostly about my mom.

The last six months has been the hardest in my life, like torcher, that's how I can describe it, pure torcher.

Sorry to be so negative.

Lesley
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I am so upset

Postby les » Fri Feb 22, 2008 12:28 am

My friend told me tonight that I am wallowing in my grief. Am I, that is so cold. I guess she is sick of listening to me and I shouldn't talk to her anymore.

She didn't have to watch her mom slowly die for days. I cannot even face what I've been thru or hardly think about it.

Lesley
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Postby Beth » Fri Feb 22, 2008 8:59 am

Good morning Leslie,

I'm glad you found this section. I think it is a much needed addition to the forum.

As far as your friend goes, I'm not sure anyone can tell anyone else how to grieve. Grieving I think is as varied as the disease which took both our mothers. I do think it is a good idea that you see your doctor if the feelings are overwhelming. S/he would be in a good position to evaluate if things are in the realm of normal or if you need some help with the process and offer suggestions particular to your community.

It is hard sometimes to try to focus on days prior to PSP when the visions of PSP are more recent and very clear in your head. If you can make a point of trying to recall a pleasant experience with your Mom each time you are filled with sadness you will be able to see some of what she would want you to see.

As I have said in a previous post, the sadness you now feel is a result of the depth of your love for her.

As far as your family, one never knows. I'd do everything to keep lines of communication open. I'd realize that they might not be at the same spot you are, but everyone is different. I'd keep one eye on your Dad because he's lost his life partner, and another on your daughter (as I recall it was one daughter you spoke about) . One will link you to the past, the other to the future, and both will allow you to focus more on the big picture. Try each day to do something special for them, be it a phone call, a flower on a bedside table to say "I love you", cooking a favorite dinner...let your imagination go wild.

Above all, keep talking & writing. If your friend doesn't want to hear it, find another friend who can listen, and KNOW we are here for you.

Be gentle to yourself, and know we care. Let us know how your doctor's appointment goes.

Beth
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new topics

Postby momppsp » Fri Feb 22, 2008 9:30 am

fyi guys: You can start a new topic under this section just like the other sections.so it doesn't get lost.


I pray your appt goes well. Please let us know.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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lost my mom

Postby ruthkri » Fri Feb 22, 2008 11:36 am

Dear Lesley, This forum hopefully will help you as it has me. Everyone faces their own handling of grief. I do feel though that you will come to realize that your Mom is so much better off and you will get secret messages all day long from her and the Holy Spirit. I know that I will never get over losing my husband and it will be a year on March 4 and I have had and still have the same feelings that you do. You will ease into some new ideas how how to stay busy and even feel that you are forcing yourself to just go out but do plan something to keep your routine going. I have just finished my training to be a lay care minister at our Church and hopefully trying to help someone else will help me. Do not try to understand just tell yourself I have to accept because thinking about the past does not allow you time to think about tomorrow and Lesley there is tomorrow and the Spring is on the way and hopefully you will find new joy in the renewal of nature and all the sunny days will replace the gloomy ones. I have gotten a lot of insight from listening to our pastors on Sunday and it always seem that they are talking directly to me and it helps to be around other folks who have faith. Just know that even though you are so distraught right now you must make an effort and whenever you do make a decision to do something your mood will change , more quickly each time. Do not be afraid to share your grief. Just continue to read all the posts discussing problems of others and you will realize how wonderful that your Mom is not having any more problems and you see her laughing and singing . Love to you Ruth Kri
wife of Bud who received his golden wings March 4, 2007
And now abideth Faith, Hope and Love and the greatest
of these is Love
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My appointment

Postby les » Fri Feb 22, 2008 6:38 pm

My doctor said my feelings are all normal and I have to talk about my grief and agony and keep talking about it until it is all gone and I can't talk about it anymore.

I am on antidepressants now and he told me to up the dose a bit, which I will do.

I guess I just will take this day by day and try to keep sort of busy.

I going to see my doctor again in two weeks.

Thanks,
Lesley
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Postby Beth » Fri Feb 22, 2008 7:07 pm

Thanks so much for letting us know what your doctor said. I was thinking about you all afternoon. Follow his/her instructions, and go back in two weeks as you were told.

Until then, do things which you consider fun. If you enjoy a good book, head to the library. Go to the movies if you enjoy that. Whatever... Be gentle with yourself. Don't dwell on the sad times, but remember the fun times. I also think it helps to try to do something for someone else. Make a batch of cookies and take them in to work, or whatever you can think of.

You said you had regrets about not reading to your Mom. Don't beat yourself up over that or anything else. You did as best as you could under the circumstances. I'm sure your mother understood. None of us is perfect, we only did as best as we could.

Have a good weekend...

Beth
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Grief Of Lesley

Postby Dana » Fri Feb 22, 2008 11:44 pm

Hi Lesley,

You can always express your emotions here on the forum and we will understand.

Girl, that "Guy" doesn't deserve someone like you and you must remember that you are worth a lot. Give it a little time.

Sometimes families do drift but mostly they always come back to the fold and not everyone grieves at the same time or in the same way.

Will keep this short and others have said a lot of good advise. Try and take it and hopefully you will survive this period of intense sadness.

I seems that when one thing hit a person there are two more waiting in the wings to mess us up. When my children were little I used to go into the bathroom when I couldn't get stuff out of my head and I would just humm out loud until I didn't hear my thoughts. That at least relieved some of the pressure.

LOL Dana
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Thanks you guys

Postby les » Sat Feb 23, 2008 12:22 am

You are all so understanding. I will try in the next couple of days to start doing more positive things instead of the negative which I have been doing.

For some reason I feel so guilty for just thinking about myself and my grieving. I don't know why but I think that I am like this bad person or something. I don't understand why.

It breaks my heart so much to think of my mom in her final days, just lying there, slowly dying and there was nothing we could do except sit there and watch and hold her hand and tell her we loved her. That was the hardest. I hope she wasn't in any pain. I hope to God not.

It could have possibly been worse if she would have died suddenly. At least we got to say our goodbyes to her. That must be a total shock when someone dies suddenly.

Anyways, I hope everyone has a good weekend. I will be increasing my antidepressants tomorrow.

Lesley
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Postby momppsp » Sat Feb 23, 2008 9:29 am

Les: I know it doesn't help to say "time will heal all wounds" because it's so new. Sometimes life throws curves that you just can't get over and sometimes a little help is needed. When Mom passed,(Jan 10,08) I questioned every little thing even "what does it matter if I live or not. You work work work to make a good living, and what, to let it slip away". But, having said that, as my little sister told me, Mom and Dad would want us to go on and be happy for as long as God allows us. She is right, so I am. I'm sure your Mom would want you to.


Time does make it a little easier and you can start remembering the good times. It really helped me last Saturday when we all got together and went through all the pictures Mom and Dad had to divide them up. We saw pictures that just made us roll laughing and good memories flooded our minds. So, it might help to look at happy pictures and ask yourself, would you want her back with her suffering.

Please remember to take your antidepressants.

Hang in there, we're here for you.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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Hi Deborah

Postby les » Sat Feb 23, 2008 6:36 pm

Thanks so much for writing. It feels good to write on here because all of us are in the same boat.

That is a good thing to look thru pictures and try and remember the good times. Maybe I will do that with my daughter and my dad.

I did take the antidepressants and today I went to this make up show with my friend and we got a make over. That was really fun and for those two hours I forgot about everything.

Have a good weekend,
Lesley
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Postby momppsp » Sat Feb 23, 2008 9:22 pm

I would suggest doing it with someone. I did not look at pictures till I was with my sisters. I was afraid I couldn't do it, but, with all of us, it was some real good memories.
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received her wings January 10, 2008
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Dear Deborah

Postby les » Sun Feb 24, 2008 12:14 am

When your mom passed away, did she still have her mind?

I think that's what makes it so hard.

Lesley
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Postby momppsp » Mon Feb 25, 2008 7:40 am

Les: Mom had complete control of her mind. 36 hours before she passed she would make these noises and open her mouth and cringe like she was screaming. She knew what was happening. For years we had hoped she would lose her mind so she wouldn't know what was going on. Your right, that was the hardest part. We never told Mom what exactly she had and what was going to happen. Mom wasn't the type of person that could handle the news. We had the priest come, the nursing home bible study teacher to talk to her. The nurses were wonderful for 5 years and also talked to her. They were family.
Once Mom settled down in the pallitive care room, she never really grimaced anymore. She had accepted the inevitable. She would raise her eyebrow to acknowledge your presence even 12 hours before she passed. So yes, she totally knew.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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Postby Bonkers » Mon Feb 25, 2008 9:35 am

Everyone grieves differently. And on a different time line and a different level. The main thing is to allow yourself to grieve--only you know what your grief is about.

I, too, was very close to my parents. Talked everyday to my Mom on the phone. I am the middle child of three and am the one that Mom and Dad used to call if they needed something or someone.

I lost my Dad to PSP and my Mom has Alzheimers and is in a nursing home about 10 minutes away from me. I feel as if I am a small child who has become orphaned. I feel as if my life and my soul has shrunk in size.

What you are experiencing is normal for you. It is not weird. Do not put a time frame on yourself--give yourself time to grieve--losing loved ones is so very hard. Your life has changed. And it takes time to adjust.

I too became depressed beyond reason--my doctor started me on Prozac which has helped immensely. I still have moments but they are not as severe. I am not sure if it is my personality that affected my depression---I am a very detailed, very sensitive person. My parents were my whole life. And it seems all of my relatives are not who I thought they were so I really have no one to discuss things with.

My Mom and Dad entered the nursing home in September of 2005. Dad passed away September of 2006. I have been dealing with depression since probably 2004. I am just now feeling like I have my feet under my emotions. Emotions still get away from me at times--but not as often. Some people would be A-OK by now---but that would be rushing things for me. So allow yourself time. You know how you feel. If you feel you have traveled to far down---seek help from your doctor, pastor or close friend. And start trying to focus on the good things and try to do something for someone else every day. Nothing big or major---but some little thing---even if it is to give someone a smile who doesn't have one. Take small steps and you will be headed in the right direction.
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Postby les » Mon Feb 25, 2008 3:23 pm

I have this one thing that is haunting me. When my mom went in the nursing home, she was still sort of okay and you could have a pretty decent conversation with her.

Well my dad was away so my aunt and I were really giving my mom the major care.

Well, they were going to put my mom to bed and my mom said to me please don't go to me until after she's in bed and I said mom I have to go I can't stay. That happened a couple of times.

I think my mom wanted me there in case the health care aides didn't make her comfortable enough but I didn't stay.

This bothers me and bothers me.

I know I couldn't do everything. I guess I wish I just could've taken this disease away from her or something.

Deborah, I wish you didn't have to go thru the stuff with your mom too but for some reason, I guess only God knows, we both just had to.

Lesley
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Postby momppsp » Tue Feb 26, 2008 7:31 am

Les: We all feel and wish we could have taken PSP away, but, we couldn't. It's ok to dwell on these thing for a while, we all do, but it cannot rule your life now. You will always have twinges of pain and heartbreak, but, you have to remember the good times. Your parents gave you life, raised you to be a productive, caring person to raise your own family. Our Moms would want us to carry on, that we must.
How long will that take is up to you in your own timeline.

I pray for your peace of mind and healing.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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Postby les » Mon Mar 10, 2008 12:06 am

Hi, I haven't been on here for awhile.

I have been having a lot of trouble with anger and a feeling of hurt inside. I never had anger issues before and all of a sudden I am just so angry and it's not about my mom it's about something else. I have never been an angry person.

I asked the therapist I'm seeing if he thinks all this anger is really about my mom's death and I'm just venting at someone else. He said he didn't think so but he said he has never seen me so angry and hurt before and I have been seeing him for a long time.

Lately, I haven't been thinking too much about my mom's death which I find sort of strange considering it hasn't been long. I don't know if I'm blocking it out or not. I am so confused.

Anyways, I wish everyone the very best and hope everyone is doing okay.

Luv,
Lesley
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Postby momppsp » Mon Mar 10, 2008 9:44 am

Les: I don't think there's anything wrong with not thinking about your Mom so much. I find myself doing the same thing. I thinks it's just "getting on with our life". It's not that it doesn't hurt anymore it's just easing.

I hope your therapist can help you with your anger situation. I will pray she/he does and you can carry on happy.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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Postby les » Sat Mar 15, 2008 11:17 pm

I just went on a short road trip with my dad and it was really hard. I felt like I was trapped in the car for 2 hours with no escape. It is too painful for me to sit and talk about my mom for hours like that.

This may sound very selfish and I know he needs to be consoled but I just can't handle all the emotions right now. I know he needs to talk about her. It just hurts me too much.

I may be a bad daughter but that's how I feel at this moment.

The other night I was looking at old pictures and I just felt mad.

Lesley
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Losing Mom

Postby Debs08 » Tue Mar 25, 2008 9:24 am

Deborah, :cry:
I understand how you feel. Your mom like my mom came to depend to on you and because it was such a great period of time you spent with her a big block of your day is empty. I'm off from work now and just want to sit home in my pj's. I am fortunate to have great friends. They call me every day to check on me. I have two friends who lost both their parents within months of each other and they assure me that each day goes by you miss your loved one but the pain eases as time goes by. The one thing that makes me feel better is being with children. My nieces and nephews make me forget for a little while. Yesterday my godaughter and I took a walk on the beach and then had dinner together. I used to walk on the beach all the time before I started to take care of my Mommy, so I realized I could take a piece of my life back. Once I get back into the real world, I think I'm going to volunteer with children. But to make your self whole again you must let your mind and body grieve the way it feels necessary to make your self whole again. Find a way to give back to your community, this way you'll feel like you have accomplshed something.
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Postby mythsrs » Wed Jun 18, 2008 12:59 am

Deborah-
I lost my mom about a year and a half ago from PSP. Not a day goes by that I don't think about her. We were very close, and all through my adult life, no matter where she was, or where I was, I would call her, if I was not in town with her. Even now, sometimes when something good or exciting happens, I'll think, "oh I need to call my mom". I was so use to sharing good news, along with bad news with her. Usually our conversations were of no news, or nothing very important, rather just hearing each others voices.

Sometimes when I think of her, at first I'll feel sad, but then it's as though she is there with me and won't let me stay sad. Somehow, I always end up laughing about a funny time we had.

I don't think we ever get over loosing our loved ones, but we learn to keep going. It's the memories of all the good times that get us through. As time goes on, it does get easier.
Myth
dau to Patricia, diag 12/2001, died 2/18/07 at 74 yrs.
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Postby momppsp » Wed Jun 18, 2008 7:21 am

Yes, it does get easier. Mom was the biggest LSU fan in the world. My sisters and I all talk about the "guardian angel" they have in heaven. Each time LSU would come from behind, expecially yesterday in the bottom of the 9th, we all agreed Mom was screaming at them from above. This kind of memories make it easy to know she's in a better place and still with us. My sister took off of work to watch at her local hangout and she said by the end of the game, everybody was talking to Mom to guide the tigers to a win.
It's the little memories that make you smile.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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Postby les » Sun Aug 10, 2008 4:42 pm

Dear all of you;

I am having a tough time again. I feel like I am having an identity crisis or something. I feel like I am a totally different person since my mom died and that I will never be the same person I was. I don't know what this new person in me is going to be like.

Sometimes, I think I will never get over her loss. I'm scared I will be like some of the people you hear about who are never the same once someone they are close to dies. I don't want to be one of those people. I want to go on and have a good life.

Does or did anyone of you feel that way?

Is this normal after 6 months or should I be over things more?

Lesley
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Now that mom is gone

Postby mythsrs » Sun Aug 10, 2008 8:08 pm

Lesley-
Six months is a very short time considering the many years you spent with your mom. I don't think there is such thing as "normal" grieving time. Everyone, and their relationships are different. My mom passed away from PSP a year and a half ago, and I still can't believe she is gone.

Since my mom's death, and a few others, including a few persons close to out family that have committed suicide, it's made me question what life is all about. How can someone so big in our life be here one day, gone the next? Why that person? But these are questions we can never know for sure.

I'm not a particularly religious person, but I believe that someday I will see my mom again. I feel her all around me. I know she would not want me to be so sad.

You still have a lot of healing, but things will get better for you. You mentioned that you have recently started having a tough time. So this shows that you had been doing fairly well for a while, and now this. You'll hit more bumps in the road, but you'll notice that they will become further apart, and not last so long. I'm still on the same path, only slightly ahead of you. This is all part of the process.

It may help you to speak to a grief counselor. If you used hospice for your mom, they have counselors available.

Take care of yourself-
Myth
dau to Patricia, diag 12/2001, died 2/18/07 at 74 yrs.
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Postby Bonkers » Mon Aug 11, 2008 8:59 am

I think that just the fact you realize you are still having a rough time is a good thing. It's been almost two years since I lost my Dad and I still have really tough times. It is getting easier but when the tough times come now--my mind turns to things more of my liking than what I think Dad would have liked. Does that make sense? I guess the tough times are still tough for me--but I seem to face them a little differently--so I just try to look at it as a step in the healing process.

Everyone has a different time frame that they grieve and heal in. This is a time that no one wants to rush or hurry to get through. You are a part of your parents--forever. We've never known life without them before. So if it takes a lifetime to grieve for them--then that is fine. You and only you know when the time of mourning is getting better. Let no one tell you that "you should" or that "you've grieved long enough". Only you know that and you will only know that once it happens. It's okay to question the length of mourning. It may be just the fact that your heart and soul are coming to terms and starting to attempt to put things in perspective according to your thinking. WHo knows. We ourselves sometimes do not even know. But you will know when it does happen. One day you will just look back on things and think "wow, I've come along ways". Then you will know it is okay to go on with life and to bless the good moments and embrace them with a peaceful feeling. I don't think the pain ever goes away--but it does become a little different. Maybe easier is the word, but it is never easy--only different. At least that's how I feel right now and it's only been two years since I lost my Dad. I am not done with grieving but I am beginning to look at it in a different light. The phrase that keeps coming to my mind right now is "I am who I am" and my parents raised me to be who I am. So now I need to become who they raised me to be. A person of my own time and my own thoughts. I know my Mom would tell me to do the best I can and to keep on with things. And I think my Dad would be happy with me just for putting one foot in front of the other and to keep busy and to keep working. That's who they were and that is who I am. I have to strike off in my own direction now. It is like two paths came together way back when (my Mom and Dad) and joined into one path (me). And that one path will join and cross many paths yet in life. I must go forward and carry on. In my own way. On my own path.
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Postby les » Mon Aug 11, 2008 1:35 pm

Thanks for answering me. I feel so alone right now and it helps me to get your advice and input. It makes me feel less lonely.

Love,
Lesley
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Postby les » Mon Aug 25, 2008 6:43 pm

I was feeling sort of better and then out of the blue in the grocery store on Thursday I thought about my mom and I started crying.

I desperately wished I could see her just one more time.

Intellectually I know she is gone but I never felt it in my heart but now I feel it in my heart so strong that she is not here anymore.

I am slowly day by day getting used to a different world without her in it and I don't feel like such an emotional wreck anymore but I do feel like my whole life and world has changed. When my mom was here and even though she was sick I felt like I had someone. I felt a sort of safety and security and I felt like I was still a kid in a way.

Now I have an emptiness which I know in time will probably heal so I just have to keep on trucking and move forward to new things.

Thank you guys so very much for supporting me through my grief.

Peace and Love,
Lesley
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Postby momppsp » Tue Aug 26, 2008 8:09 am

Les: I don't think we are suppose to "let go". Our loved ones will always be part of us and will always run into things that will remind us they are gone. My husband put "my pictures" as our screensaver and a lot of pictures is of Mom and you can see her stuggle in her face. I have to move the mouse to get the screensave to quit. It's too hard to look at them. When I go the stores, I always see things we would buy Mom like the sippy cups and I have to look away. See, we will always have twinges of pain inside. We just move on with OUR life and try to remember good things.

If you feel depressed to the point of not carrying on with everyday life, it's time to seek counsel. Having said that, you postings have improved emotionaly. I hope it will continue to improve.

Hugs to you.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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Postby les » Tue Aug 26, 2008 8:59 pm

Dear Deb:

Thanks for your post. I am doing a lot better then I was and I am working and taking care of my daughter and going on with my daily life.

It's just the moments that get me, when I'm thinking about other things or doing other things and all of sudden thoughts of my mom come flooding in my mind, thoughts of her last days or thoughts of how much she suffered and I well up with tears and feel the agony and then it dissipates and I feel okay again.

I feel like you guys understand me because we are all in the same boat. People will say think about the good things. I think I am almost there and I am having some good memories of my mom now. It also helps reading the posts on this forum because you don't feel like you are the "only one".

I guess I also wish I had a companion/partner and I feel lonely for that too.

Love,
Lesley

Mom-Bev-freed from PSP Jan 29/08
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Postby Bonkers » Thu Aug 28, 2008 9:44 am

Grief, pain and hurt all come in waves. Think about an ocean and how the waves lap in. Some come into shore full force and others just kind of lap in. Grief works that way too. In waves. Sometimes crashing in and sometimes lapping in.

I lost my Dad 2 years ago and I am just now finally getting myself uprighted again. Life has changed to what I knew before. I never knew life without my Dad to lean on and now I cannot lean anymore. I have to accept the lessons that my Dad taught me while growing up and put them into use now. I am the product of my Dad. I am what he made. Now is the time for me to become what my Dad expected all along. I must pick up the "torch" and carry on. It is my duty, my life, and I must live it now. I still have my Dad with me, but just in a different way. I must listen to him through my heart and not my ears now.

I still find the waves of grief and loss still come rolling in at times---just not as often or as strong. I feel as if I am getting my footing back on the shore slow but steady now. I have a different view on the abscence of my Dad. I don't miss his physical presence as much as I did at first---I still have him in my heart and soul----it's kind of like looking for something---you just find him in a different place than where he was. I find him in my laughter, my disappointments, I find him in things I have found he wrote, I find him in the land he farmed and loved, and I listen for him in my heart. His beliefs, his thoughts and his love come flooding in and I think that is what is taking the force out of the waves of grief. Waves of Dad's soul come flooding in and calm the waves of grief.

There were times at first that I didn't want to face life without my Dad--in the here and now--no matter how awful it was for him to be here with me--but now (with time) I understand. I still don't like it. But I am learning to accept what has taken place and I am becoming at peace with inside myself. Now when a huge wave of grief comes rushing in----I listen for my Dad quietly--and his love immediately floods my soul and breaks the wave of grief.

I truly feel that grief is a good thing. It is an emotion that God gave us and it is an emotion that we must endure and that we must experience. God wanted us to have an emotion to able to get through a loss. We are human, humans have emotions, emotions are good things to have, and we can only deal with life when we experience emotions. Even if the emotions are the ones that hurt to feel them. But eventually our souls and hearts find a way to deal with the pain.

Everyone has a different time frame in which to grieve and to heal. And grieving is not a process that should be halted nor slowed . Only you know the time frame it takes for you and sometimes you will not know the timeframe until it happens. You just know that one day you are doing better than you were. Sometimes the end of grieving happens quietly and comes in slowly. There is nothing wrong with you when you see your loved ones favorite fruit int he grocery store and you begin to cry. Tears are cleansers and they are strength builders. They must be shed to perform their duty. And the only reason the tears well up in the first place is because of the love that you lost and that you miss. It's okay to cry in the grocery store. And if anyone else sees you--they are a human too and they should understand and usually do. If they don't --they are missing being human.
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Postby les » Fri Sep 19, 2008 12:04 am

You guys, I want to do something to try and make this disease more known. It destroyed my mom's life and also it destroyed a part of me that I can never get back.

I don't know what to do though. A walk-a-thon? or something.

Does anyone have any ideas

Lesley
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Postby les » Mon Sep 22, 2008 6:59 pm

I feel sort of hurt that I never got a response to my post. Was that really dumb what I said in it.

Lesley
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Postby ckiefer » Tue Sep 23, 2008 1:41 am

Not dumb at all!! Everyone is probably just thinking of how best to respond, I suppose. I've been thinking of having a T-shirt printed up that I can wear to raise awareness of all neurological diseases. Perhaps we should post a new topic under the Back Porch section of this forum.
Diagnosis of PSP November 9, 2007
Age at diagnosis 59
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Postby les » Tue Sep 23, 2008 7:07 pm

I would like to get a T-shirt too. That's a really good idea.

Lesley
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Postby les » Tue Sep 23, 2008 7:11 pm

Maybe they could sell it in the online store here. I wonder if they've thought about that. I would wear it all the time and I know people would ask me what does it mean? I would gladly tell them in order to get the disease more known.

Lesley
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Postby les » Sat Sep 27, 2008 8:57 am

So often I get flashbacks about all the suffering my mom endured through this disease and all the suffering I went through watching her suffer.

I HATE THIS DISEASE!! And how can you really get mad at a disease. Who or what are you supposed to yell at, thin air?

I swear that I am going to do something to make this disease more known so there will be way more research. I don't know what I will do yet or when, BUT I WILL DO IT.

I do not want one more family to go thru the HELL that all of us have gone thru.

Lesley

Mom - Bev died from PSP January 29th, 2008
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Postby Bonkers » Mon Sep 29, 2008 8:46 am

I read your post but was at a loss as to what to say. I feel the very same way! But HOW to do battle and slay the "dragon" named PSP? The best way is to do exactly what you are doing---stirring the emotions, keeping active in pursuing ideas, address the unknown, and channel the anger into action! Anything is better than doing nothing!

T-shirts, walk-a-thons are excellent ideas!!! Take an idea and put it into action. Every blow against PSP counts big time! Little steps, big steps, in-between steps---are all steps in the right direction!!! It is research, awareness, and promotion with determination and committment behind it that will fell the beast of PSP!!!

I helped with the bracelets and also donated a quilt for a fundraiser. I won't sit still even though my Dad is no longer fighting the battle--I will fight for him! PSP is a horrible disease and if we can at least find a way to hold the disease at bay until a complete cure is found--then we have gained huge steps in the fight against PSP!

Prayers, donations, helping families, anything..... is better than nothing at all!!! And YYYYEEEEESSSSSS---it's okay to be angry AT PSP!!!!! God gave us an emotion of anger---and anger is good as long as it is channeled into something positive! Anger is passion at work! So be passionate about taking up the fight against PSP!!! We will NOT let PSP win!!!! A cure is out there---we just have to find it!!!! I can't do research but I sure can do money raisers to fund the people who can do the research!!!! One little step at a time is all I can do---but by golly I am doing it!!!

Maybe something like a "Stomp Out PSP Pic-Nic" maybe held on Dudley Moore's birthday????? Perhaps a nationwide Pic-Nic???? Something to make the world aware of the disease and it's grip on people's lives.

So please don't feel hurt due to no response---we all just don't know what to do either! Just need someone to step forward and implement an idea into action!!!!
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Postby les » Mon Sep 29, 2008 9:15 am

Hi Bonkers:

Another idea I had was you see my daughter is a singer and performs on stage a lot. I was thinking of getting her and the band members black shirts with white letters saying "Cure PSP" or something like that.

People will be curious about what it means and ask and I will then give them one of those fact sheets and tell them to donate to Cure PSP organization or I was thinking that the band could have a fundraiser for it.

Do you think these are good ideas?

Lesley
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Postby Bonkers » Mon Sep 29, 2008 12:15 pm

If it raises awareness AND raises funds for CurePSP---then YES it's a good idea!!!! You never know till you try. But you do know that if you don't try there won't be any awareness or funds raised---that's a given!!!! So all we can do is TRY. And just because something doesn't always work well the first time or two---doesn't mean to give up right away---a good idea is worth trying several times!!!!!! :)
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Postby LRS » Mon Sep 29, 2008 6:57 pm

Hi all,
It's been 2 weeks today since mom passed away. I feel like I am not grieving as I should be. I've talked with family, friends, church family, my pastor and everyone says I am okay. I just am not feeling devastated like I thought I would be. I am a christian and have leaned on God throughout this whole journey with mom. And, He has blessed me with a peace that I guess only He can provide. When mom took her last breath, I felt such a peace come over everyone and everything. I love my mom so much, and have always been so close to her that I always prayed growing up that I would die before her, because I knew I couldn't survive her death. But, I am surviving and I am doing good. What's up with me? I've told so many that I think I grieved and mourned so much for mom as she was fighting this disease that her passing was a blessing to her. I have had some periods of tears. I do miss her. I miss the healthy mom. I do find myself having to adjust to life again without our set routines. It even seems weird to go out of the house without having to have things lined up for care for mom. I have the blessed assurance too that my mom is in heaven. I think that helps us who are left behind even more. Maybe the gut-wrenching, snotty nose crying will hit me one day. Maybe it won't. I just want to know that I am "normal" in how I am feeling. We buried part of moms ashes today in the family plot. Just me, my sister and my husband went. We did everything ourselves, there were tears, but laughter also. In 2 weeks, we take the rest of her ashes to the coast at her request. Guess I just needed to "talk" a little.
God Bless
Lisa
*Mom, Jean, 72, symptoms of PSP since 9/07, diagnosis of possible PSP 2/08, met her Savior 9/15/08.*
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Postby les » Tue Sep 30, 2008 4:33 pm

Dear Lisa:

At times like this I think God is our strength and carries us and maybe that is what is happening to you right now. God is helping you get thru this.

I too was very very close to my mom and I have had a difficult time and I still am having a difficult time, It is so hard for us to watch our moms or close family suffer thru this terrible disease and we suffer along with them. I try and think my mom is no longer a prisoner in her own body and she is free!

Love,
Lesley

My mom died January 29/08 from PSP
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Postby cats1424 » Tue Sep 30, 2008 5:35 pm

Hi All,
My husband died almost two weeks ago and at moments I'm fine and other moments without warning I'm balling my eyes out. Sometimes it is a thought that sets me off, other times I don't know what happens to set me off.

I've read the posts about needing to do something about this disease. I think everyone's ideas are great. I have a thought to share....

The CurePSP Society does not do much to bring attention to the Brain Donation program. I think we should do what we can to bring the brain donation program to the attention of any families who join the forum. I know we need to draw attention to PSP but through brain donation the researchers might be able to discover a test for PSP, or a medication that could slow down the disease, or a med that could help with the symptoms. If we could let people know that the Society has a fund set up where they can reimburse part of the cost of the donation (they will reimburse $750.) I think maybe more people would be willing to consider a donation. It seems almost like a hush hush type of program. The information is in a brochure that the Society offers on line and through the mail but I think some people automatically assume that it is to expensive and that to set it up is to involved. Does anybody else feel the same way?
Diana- Husband diagnosed March 28, 2005. Received his angel wings September 17, 2008 64 years old

Whether it's the best of times or the worst of times, it's the only time we've got.
Art Buchwald
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Postby momppsp » Tue Jul 07, 2009 4:45 pm

Thanks Healing. I haven't been here in quite some time but all is well. It's been a year and a half and doing just fine. Time is all anyone ever needs. I just found posting here brought me too close to Mom and the pain and thought it would just be better not to check in so often. Maybe I'll come back so I can help others still going throught the journey.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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