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Old 07-17-2011, 07:03 PM   #1
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Long overdue howdy

So - hi everybody! I know - I just - disappeared off the board. Not good. The stress has been building in my life, and I realized I haven't been on here with all of you for far too long.

It will be good to catch up with all of you. As for me, my DSD J. is on that long, slow dementia decline. Thankfully (VERY thankfully), he still knows who my mom is, who I am. He has frontal temporal lobe dementia and my mom said she read (she reads voraciously) that they don't always lose their memory - completely.

It's so painful to just.......stand by and.........watch...........his slow......decline. He's getting physically weaker all the time. It's getting harder and harder to transfer him in and out of the car. Whereas a few months ago I could take him and my mom out for whatever medical appointment was needed and a bite to eat, now that's too much.

He definitely is stressed when he is in an unfamiliar environment. He loves a good burger (as do I), and we now have a local "Fatburger" in our area. I took him and my mom there recently. Although he enjoyed the food, I could tell the unfamiliar surroundings made him quite stressed.

I'm not visiting him as much as I used to. I partly feel guilty, but I HAD to start building my life back. Between my own health challenges of recovering from cancer, and all the time and attention both he and my mom have required these past now 3 years, I felt that I had to get back into life!

I went through several horrible months of devastating depression about losing him last year.........there were days when I wondered if I would ever come out the other side of that depression. Thankfully I did, but now I'm in this weird state (??) of - anticipating his death. It's difficult for me to describe........but I knew if anyone could relate, it would be my dementia buddies here

I actually did a TON of pre-planning a few months ago. I just had a sense that he might pass sooner than later - knew that it would all fall to me to take care of - so I took care of - e-v-e-r-y-t-h-i-n-g!! Not only picked out their final resting place, but mine too!!

It was a **strange** thing to do, but it gave me alot of relief. I now know that when that awful day comes, all I have to do is make a phonecall. All the decisions have been made - both for he and my mom. It's paid for - done.

So - I feel - strangley ready - yet afraid - afraid of what - I don't even really know. It's an existential kind of fear right now. So - I guess you could say - just - fear of the unknown - of wondering - when?? And wondering - will I feel relief - or devastatiion all over again??

Somehow I think it will be a mixture of the two. I also have a sense that once he passes, my mom won't be far behind. I see how much all of this has aged her. Understandably so. After having moved her back to their house (my DSD is in a wonderful adult family home - for over a year now - wow) last fall, she has decided it's too much upkeep for her to live there.

That's probably also why I am feeling overwhelmed. It's alot of work that falls to me to now get her house ready to list again - and to hopefully get it sold this time. I guess that's enough rambling for now. Thanks for listening - as you always have.

 
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Old 07-17-2011, 10:52 PM   #2
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Re: Long overdue howdy

TC... it is so good to hear from you and know that you are finding a little bit of your old life back. GOOD FOR YOU!!!! Take the little moments of respite when you can.

I so understand what you are saying in your e-mail about expecting, being ready, trying to be prepared, yet wondering when, and a little fearful of the unknown. I am there!! It's an acceptance of what will be. We do the physical things we can to make that moment easier. We are ready for the journey to be completed yet we don't know how many more miles are left to travel. It's like the little kid saying..."Are we there yet!"... from the back seat. We are not driving... just along for the ride. Yet we don't know what is at the end of the journey and we wonder if we are really ready. What I do know is... if we survived the journey we will be ok when we reach the destination. This disease builds strength and courage that will serve us well. We can benefit from what we didn't want When Dad passed I just keep rocking and rolling because I had Mom right behind him. I do wonder what life will be like when she is no longer here to consume my time. I do believe I will find something very different to do!

Mom and Dad's house is still on the market but I truly believe that is because of the lousy relator that we had. I say had because we just fired her the first of July!! Hopefully the new relator will do a better job... at least she seems to be doing something which is better than we had! We are also finishing up the probate on Dad's will. Hopefully it will be completed in the next few weeks. FIL's will probate is finished and we are well under way with my MIL's. That is an entirely different story with lots of hard feelings but it is exactly what we expected. I am just tired of dementia, death, wills probates and squabbles.

My daughter is here for a few days and that is what puts a smile on my face. Now I need to get to bed because she will have be up and moving early. Her car needs long overdue maintenance and we are spending the day with Mom! I look forwards to every minute with my daughter... where ever we are!

I am so glad you are doing so well. Know I think of you often and it was so very good to hear from you! Stay in touch

Love, deb

 
Old 07-18-2011, 03:40 AM   #3
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Question Re: Long overdue howdy

I can relate to and have the same fears that you have expressed. Sounds like you have done a good job getting everything done ahead of time that you can. I need to make some final plans for my mom but feel paralyzed when I think of it. I feel like my life has been on hold for a very long time and it all affects not just me but my family as well. Just know that you are in our thoughts and we feel your frustration and fear of what is to come.
Gail

 
Old 07-18-2011, 04:54 AM   #4
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Re: Long overdue howdy

TC08: Your posting gives some good advice for others too. I fill out an annual information form for the NH every year, and they ask about our funeral plans. I have been putting this off and putting this off. I might need to relocate. DH doesn't seem that bad (although he's losing the ability to walk and can't feed himself anymore). I have tuition bills and continuing expenses (thanks, kid #2, for the big uninsured collision damage to the car this weekend...).

After reading your posting, I'm going to put death arrangements on my to-do list for the next six months. I think I'd rather get it done now, than wait until there's an emergency. I don't have a date of course, but I'd be foolish not to acknowledge that it's going to happen within our forseeable future.

 
Old 07-18-2011, 07:51 AM   #5
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Re: Long overdue howdy

Thanks everybody. Deb - WOW - I guess I need to get caught up on the in laws?? Soooo sorry - soooo incredibly - sorry. Glad you're spending time with your daughter! Enjoy every minute of that!

Aras & Beginning - hello I know - making the arrangements is a strange experience - but for me - I felt a HUGE burden lifted once they were complete. I'm a business person - and was able to go into my "business mode" to "take care of business" - scene at funeral home: "and let's see - extra charge for embalming - hmmm - no - my parents really don't want to be embalmed - *check* - extra charge for extra viewing - hmmm - not really necessary - *check*.......you're running a special this month on granite grave markers you say?? 50% off? I'll TAKE it!!" - every word - totally true - yes - even the 50% off special!! I got my parents a more beautiful final resting place that beat the veterans discount, etc etc!

No - I would not have been able to be that together had I had to make those arrangements at the time of their passing. Hope that helps and gives you all a chuckle!! It was a funny/weird day - all around! I remember going to Starbucks afterwards, and sitting, and thinking about the plans I had just made..........

Love & hugs to all!!!!

 
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Old 07-18-2011, 07:08 PM   #6
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Re: Long overdue howdy

Welcome back! You came with a message we are all hearing and relating to...
It is the wondering about when they go and how will they go and how we will react when they go and ..so on and so on and so on. All this is in the future...the near future and we won't know the answers to the questions til they happen. But wonder about it we will do anyway. 8 /

I give you credit for doing all the funeral arangements yourself. I took the easy way out. I told my husband and son to do it and they did. Phew. Check that off my list. I felt an immediate weight off my shoulders once it was done. Like you said...I didn't want to have to deal with it when it was an immediate necessity. I can look back on some of it now and laugh a little..my brother and I spent time online looking for the perfect urn. Actually talking about what colors mom would look good in. Good grief. We will talk on the phone sometimes and laugh at ourselves. We wonder if we will be strong like our mother or like my father's mother and aunt who tried to jump into the grave after him. Oh those crazy Italians.

One of my worries is the moment we get THE call. How will I react and will I be paralyzed with fear ...but the last week I have gotten calls from mom's and when I see the number and know it is her facility calling I was resigned to what I might hear. Let's hope it is that way for the big one. THE call.

I hope you don't feel guilty about taking some of your life back. it is a necessity. This disease takes enough out of us all...it shouldn't take our whole lives too.

Love, Meg

 
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Old 07-18-2011, 08:46 PM   #7
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Re: Long overdue howdy

I LOVE that I can give hugs now!! Cool!! Meg - you have me chuckling about the Italians throwing themselves into the grave! I'm half Greek - so that wouldn't be beyond me

I was reading your posting - just **nodding** my head. I had coffee with a good friend today and shared with him that I just have this......bad feeling.....that something **bad** is coming down the pike........I know he was trying to make me feel better - and told me - "nothing bad is going to happen to you." Uh-huh.......I know he meant well.......but.....I have this bad........foreboding feeling........just can't shake it.

It's very **odd** to be.....anticipating death......I need to STOP IT!!!! HA!!!

 
Old 07-19-2011, 03:02 AM   #8
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Re: Long overdue howdy

TC-08: Half Greek? Half Russian here... Orthodox? I grew up with feelings of doom (with the chanting/dirges to match) LOL!

Meg/TC: I think it's a dark little secret about Alzheimers. Eventually we start to see black humor in the disease, and laugh at some things that other people might find shocking. For ex., the other day we were talking to a nurse in the NH, when all of the patients started to slowly surround us...in wheelchairs using their feet to creep forward...with walkers....blank faces and arms reaching out....surrounding us....my kids and I started laughing at how much it was like a scene from a Zombies movie. Sometimes you laugh and then feel a little ashamed. Another Alzheimers' roller coaster.

We also spend time thinking about how we're going to handle the death. The NHs call whenever there's a patient fall or something else going on. As the disease progresses, the calls become become more frequent. You start to realize that one of the calls could be "the call."

I'm worried that I will just be relieved when DH dies, and that everyone will criticize me for not weeping and throwing myself in the grave. Then again, maybe I'll surprise myself and break down totally.

 
Old 07-19-2011, 05:24 AM   #9
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Re: Long overdue howdy

I am on my way to see mom so just have enough time to type out that I am so happy we have this place to come to and our own little community of doom watchers.

I swear I can sometimes see the angel of death perched on the fence outside mom's facility. I shoo him away from time to time but there have also been times I waved him to just come in!

Later...Love, Meg

 
Old 07-19-2011, 06:47 AM   #10
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Re: Long overdue howdy

Oh - I'm so glad I'm back with you all! We all understand eachother like no other Beginning - no - not raised in the Orthodox faith - sometimes wish I had been (??), but there is no doubt that Mediterranean blood courses through my veins! I can sometimes have the hot head to prove it!

So - I'll make my big confession here......I've actually been feeling lately like "just get it over with already"......I'll feel that way for awhile, then go to see my DSD and feel **guilty** that I am wanting this horrid journey to end. Yet.....I know him well enough.....we've shared a deep and lasting wonderful bond of dad/daughter (he married my mom when I was 5)........and he lost his own mother to Alzheimer's.......so I know that he is, on many levels, ready to traverse to another plane (plain??) himself.

I'm TOTALLY with you on the black humor! It's the only way I have survived this journey!! My DSD spent 2 separate 100-Medicare-days on a locked dementia ward (because he was such a high fall risk) in the last two years. Oh my gosh - the stories I have from THAT place!!??

That's what I love about being able to come to this board. And now picture Dorothy at the end of the "Wizard of Oz" - that line about - now that she's back home again - she'll NEVER-EVER leave again! I'm sitcking around here with all of you! You GET ME!!

Love & Hugs to all!

 
Old 07-19-2011, 08:48 AM   #11
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Re: Long overdue howdy

Beginning, for a while I thought there was something "wrong" because I didn't feel that overwhelming sense of grief when Dad died. I was sad and I miss my Dad, but from the moment "the call" came until today the overwhelming emotions have been peace and relief. It was only after talking to a good friend who had just lost her Mom to this disease that I realized I was not alone in this feeling. She thought there was something "wrong" with her as well. I have come to understand that there is nothing wrong with this response. I did my grieving long before that call. Like TC said... I knew that Dad was tired of fighting this disease and he was ready for relief... and so was I. We both fought the good fight! Everything in life eventually has an ending.

I have been guilty of the dark humor as well. Humor is self defense. It is finding a way to deal with what we shouldn't have to deal with. It can get us through the day. Beginning, I let my daughter read the Zombies comment and she got a good laugh as well. We both enjoyed the moment! (She was in a commercial for Zombiland and it was a bit disturbing to me to see her in all the make up). I do think we have to keep the humor intact to survive the rest!

There is not many places that this discussion would truly be understood except by those of us who have been there... and for that I appreciate each and every one of you for letting me know I am ok!

Love, deb

 
Old 07-23-2011, 10:12 AM   #12
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Re: Long overdue howdy

So this was an interesting week. I had been trying for months to have a pastoral visit for my mom and stepdad. Finally got that coordinated for this past Tuesday.

I knew it would be difficult - and it was. I mean - the pastor was great - very near my DSD's age (he's a retired pastor who has been filling in at my church). I wasn't sure how either DSD or my mom would respond. Initially they were both hesitant (yes - this was **my** idea - and I was aware I was probably doing it more for me than for them). But once the pastor began engaging them in conversation, much to my surprise my DSD actually opened up and talked about his disease! I was amazed how lucid he was.

With leading questions from the pastor, he talked about how it's difficult to be losing physical and mental ability. How he doesn't like now being taken care of, versus being in the role of "caretaker." He's been such a great husband - dad - and it just confirmed what I've been saying to my mom all along. That it would be IMPOSSIBLE for he and my mom to live together anymore - because he won't accept help from her.

It totally goes against his grain! He's been taking care of her for 40 plus years! Even in his now fragile state, he's not about to let those roles change - not if he can help it - God love him!! It was a difficult meeting - but I just somehow felt compelled to have it - to offer that emotional / spiritual support to my mom and stepdad. The pastor offered communion which J. turned down (I figured he would).

I don't know that I'll have the pastor visit again, but as difficult as it was, my soul feels a little more rested - knowing I had the pastor visit - and that prayers were said. This is such a horrid way to watch a loved one go out......my emotions are all over the map. Some days I feel like I can handle it - other days - I feel like I'm going to collapse under all of the heartache - worry - and watching him get smaller - and weaker......

I am so very grateful that he still knows who I am though. I just drop in unannounced - and he always has a knowing smile for me.........WAAAAAA!!!! I hate losing my dad!!!!!!! Thanks for letting me vent...............love to all -

 
Old 07-23-2011, 02:41 PM   #13
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Re: Long overdue howdy

Greetings.

This board has helped me so much....
I lost both my parents this year.. ...Dad in Jan.
and Mom last month..just 5 months apart.
Yes... it is very common for the spouse to go shortly after there loved one.
I totally understand the stress....! It had been 2 yrs of not stop stress
I had cancer 4 yrs ago and survived.....had a good 2 yrs in between.

Then dad has his stroke in jan of last yr and it alll started again.
It was quite a roller coaster......
the most stressful time of my live
Dad in and out hospital, nursing facilties , care homes,,etc
a yr later,,,Mom had her 1st stroke,,then 2 seizures, and finally at UTI
so serious that antibiotics would not clear up.

So I am still recovering from all of this.
Gonna take a while.....

Keep writing...it helps to vent.

Hugs
chris

 
Old 07-23-2011, 02:49 PM   #14
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Re: Long overdue howdy

Hey Deb

I was the same way....when I got the call that Dad had passed... I was so relived for him.....
But with mom..it is so different...
hard to explain...
I guess moms are very special to us....
dont get me wrong...I loved my dad very much...he was so good to me

Mom and I had gotten very close after dad got ill
and she depended on me for everything.

Been going thru more of there stuff today...getting ready for yard sale
so hard.....

So when did your mom have the fall?
was it outdoors ...? near the tall grass?
I kinda lost track..being gone in Los Angeles

 
Old 07-23-2011, 06:02 PM   #15
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Re: Long overdue howdy

TC.. whether it was for your parents or for you it appears to be the right thing. Sometimes we have to do something that will make it easier for us to go forward. If it helped you... it is a good thing Know it is always good to vent and this is the best place to do it because there are so many here that understand. We are all going through similar emotions and situations and there is nothing like connecting with those that have walked the path we are on

Chris, yep, Mom fell behind the tall ornamental grass in the courtyard that I have warned about for too long. They have no idea how long she was out there before one of the caregivers found her. I was angry enough, but when I arrived at the facility, she was back in the courtyard... and the heat index was close to 100! I gave an ultimatum.... and the grass was cut in less than 24 hours. I just hate it took Mom's fall to get it cut back. Since then I have talked to the Regional director and he assured me it would be dug up.

Going through the stuff is difficult at best. Keep anything you might have emotional attachment too. You never know what might become important to you. If you keep something that turns out to have little emotional attachment you can always get rid of it later

I love my Mom but I was a Dad's girl!! Perhaps it was the heart attack in 1977 when I was told he would not survive.. but did! Perhaps it was the heart surgery in the 80's when he only had a 49% chance of surviving the surgery... but did! Maybe it was all the years with heart disease and vascular dementia. I knew I had 33 borrowed years with him and he was ready to go. I feel it will be the same with Mom since this is her worst nightmare and not the way she wanted to end her life. But you never know until the time comes... and whatever you feel is always right!

Love, deb

 
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