The last post was for Karen, this one is to bring everyone up to date on what's going on here.

Bill has been doing good (well as good as I can expect). His walking is more unsteady and he is spending more time either in the recliner or in his wheel chair. He's had three falls since coming home from respite the last time, but they were falls where he missed the chair when trying to sit down and ended up sliding to the floor. No hard falls, yet, but I'm sure there will be one eventually. He wants so much to do things without my help.
There are times when it seems like it's getting easier to care for him. His violent anger is getting less. There have been several times in the last couple of weeks where he's told someone that I was his wife. Also, several times that he has looked at me and said "I love you" or "I'm glad you
re here". It may not mean anything but it makes me feel good to know that somewhere in there He still remembers.

Hospice has arranged for him to go into respite again next week. I'm sure the break is making it easier for me, but when I come back after having a volunteer for the day and he reaches out to me and starts to cry , it really makes me feel bad to leave him for five days. This is especially true since the last time the nurse said he wandered around looking for me and kept saying something about "home".

Hospice said they will arrange for a respite break every month. I think they are trying to compete with their sister Hospice from the "Big City". They are doing everything they possibly can to help me. They have delivered so many different pieces of equipment that I've become friends with the delivery guy. His dad is also suffering from AD along with kidney failure and emphasema. We always spend a few minutes exchanging new ideas on what we have found out to make it easier on us.

I'm doing good and enjoying the outdoors. Right now I am spending time just watching the humming birds. I've counted (best I could) 15 of them buzzing around. Their chirping is so loud it sounds like I'm sitting outside at night listening to the night noises. I have to stand close to the house when they're all around or I'd get dived bombed. There has been several times when I've felt the air as they zoomed past me.

I have taken down one of my big bird feeders because a bear has been visiting us at night and he loves the bird seed and the suet that I put out. I'm hoping the bear dogs come out this weekend and chase him or them farther away.

I guess I've about used up my alloted time on line so I will go for now and talk to everyone later.

Joyce,

Gosh, its so nice to hear that Bill is doing better with the violent anger. I had to laugh when you said he wants to do things without your help. My Mom is so stubborn about me holding on to her when she walks from one place to another. She keeps saying that I think she's crippled! (her words) So lately I've been telling her, its not her, its me, and that I need her help to get from one place to another. Of course sometimes she believes me, most she doesn't. So very clever!

It's nice to hear that he's been referring to you as his wife, and that he says "I love you". How wonderful for you to be able to hear that. He knows Joyce, he knows who his love is. I believe that the love are LO's have felt never really goes away, especially between husband and wife. It may dim a bit, but never goes away.

So glad to hear that hospice is helping you out so much. And hey, if it's the competition with the "big city" let them keep competeing. Hopefully when you return home, the big city will do the same.

I was amazed at what you said about the hummingbirds. Any chance of pictures? Would love to see that!

Scary though about the bear. Hope those bear dogs come real soon. That would scare the heck out of me!

Keep us udated when you can, and enjoy those I love you's from Bill. Got a feeling its a new development for him, and it may just stick in his mind that it makes you happy.

talk soon,
Jackie

Dear Sweet Riley,

I'm so sorry. I'm glad that you and your girls were with your Mom when she passed from this world to be with the Lord in the next. I'm sure that your Mom was conscience of your presence and in the end her prayers were answered. Thanks be to God.

Dear Karen, you've been a faithful daughter from the start of this journey and you have managed to remain faithful and you did what was right along the way and fought for your Mom's best interest to the end! God knows everything and He is just. Let God deal with your siblings. Ask Jesus to help you through this time and the stength and Love to forgive your siblings [you do not have to like them or their actions]. Ask the Lord to grant you the peace that surpasses understanding. Pray the Lord's prayer. He will help you through this, Karen. He will. Keep the faith, dearone.

I hope that you will take care of yourself and your family. You've been through hell on earth the past few years and it is going to take time to heal---- please be gentle with yourself. Please keep in touch with your friends here at this board. We love you! OXOXOXO
God bless you and your family.

Grace and peace be with you.
Love,
Marcie

Carol: poa is the exectitor...which is why sos was staying with her....she can control her---which is why I have known that anything I ask for won't be done its what sos gets---silly me! I never thought of what I wanted nor had the adacidy to take--to the point if mom would have given me any of these things I would have turned them over to poa just to follow protocal---I just keep looking at hubby and saying your brother had it way way to easy.....we did as we were told no questions asked---and it was done fairly--the things my mother in law wanted us to have----were despirsed when he was ready! I knew it could happen just kinda hope maybe....but oh well! I know some of the special things the ladies wanted I have told them dream on...if sos wants she will get and your feelings "tough"----and yes it was kinda illegal for sos to take the ring....

As for the sibs---I was so good before--this whole thing has brought back so many many feeligns that I had moved on with....I am tired of poa telling me that things will be presented for "everyone" to decide....but since I'm so far out of the loop.....I guess I'm just tired of sos getting everything and me nothing...I didn't get a personal thing from my dad and now with mom....doubtful! I don't want the birthstone ring that sos has at this point even if she were to return it in a few months after she is down with needing it for "emotional" support...it tainted at this point....as for the engagement diamond? if it is the other diamond on the ring will----I'm not so sure---I had gotten it when I was engaged way back in the day and sold it to mom due to needing money for rent after being laid off---lets just say I don't have any strong emotional feelings towards that one---it would continue the cycle I'm on now and I really don't want to remain in this mood ---- and am working very hard on letting go and letting God....however, after the warm reception I got at the funeral guess this means I don't have to go to poa's sons wedding! Not that close to him anyways....I just have limits to what I will put myself thru!

The ladies and I have tried so hard to find any element of laughter in this thing as we can...it will help us I think in the long run---we had to find humor in some of the irratic behavior of mom when she was calling 30 million times a day asking "where is my car" or "i have a doctor appointment and I need my car" & my favorite "I'm calling the police" --- the sibs never understood the disease or the sundowning effects with mom...and I always said that I could handle mom and the disease it was just the crap from the sibs that made it harder!
I think one of mom's doctors wrote on the obit we had (yet another "TTFN" mention (poa is really working that one! and she has ruined it for us but once again we are trying as hard as we can to find the humor in it!) and mentioned how wonderful mom was and funny and that I did great with her--so who knows what they will think of that one....but then again POA told mom it had been a "long journey for them" (started what March???)---I am glad that mom didn't have to live any longer in that zombie state anymore. That was hard to take---

xxoo
karen

I osted some of what went on at the funeral on QM&FT----it was a long day at the funeral---we got there extra early and left the reception extra early and got stuck in major traffic....not fun! we were in a truck with leather seats, no a/c and 90 degrees outside and going maybe 40 at the highest but always when I would get some hope of getting faster---slow down....

the girls & I both felt like the elephant in the room and it was hard!--think it would have been better to reflect on mom where her and dad used to live called whidbey island....instead of the funeral! The guy delivering the funeral did say what I requested him to say about the rose...don't know how the sibs took it but....he also did mention the 3 hour store visits me and the ladies spoke of....most of what poa and sos gave of mom's life was said was picture perfect and the reality???? well you all know that! if only......The ladies and I are using humor to get thru some of this----their impressions of their aunts have really surpirsed them. I had told them stories of it but now they witnessed it.....they also got tired of the judgign that sos does on us "lower" peeps....they finally got that one!---you know sometimes owning a prada wallet, purse, designer clothing doesn't make you a very well rounded person! sometimes the other side of the tracks in better!--we have found some jokes in the ring---our normal one is how can we handle this without the emotional support from the ring??? type thing!

At the funeral since we got there so darn early---we wandered--Dad is buried at Tahoma National Cemetary and it is really beautiful...it makes you proud to be an American and seeing the military personel treated so very well! it was a very busy day of services there around dads neighborhood----we heard the gun salute along with taps and that just did me in..knowing what lay ahead! (granted mom didn't get it but....) before we got in line to go to the service we hit the restroom...after me and R were done B had to use it...I noticed someone that looked alot like sil so I was trying to get ready to ditch really quick....R kept mouthing B and pointed towards her stall and I kept mouthing back sil name after a few rounds of this game we were on our way out leaving poor B to fend for herself--(she is the that can handle conflict and doesn't care what you think--me and r are the rather timid ones...we just keep to ourselves!) she is going over to wash her hands and wondering why we are ditching her...got to the car told her she understood...
After the service we went to the reception at a cousins house---I wanted to talk more with mom's sister and another cousin....other than that? not so much! the ladies weren't to sure but since I was the driver....no choice!---well the receiption was even worse than the service----we left and I told them sorry they were right! I wasn't good!

We do reflect on mom and how wonderful she was! They saw the good the bad and the ugly but focused on mom and what we could do for her----they truly are a blessing from God....me & them---we got the disease! Sadly the others---not so much! I still feel a tinge of guilt over the last phone message from mom in March when I had unplugged the phone since I was pretty sick....she wanted me and told me I was being mean--& how much she needed me...but know that I couldn't have done anything for her----I just know that the lessons I learned I do want to share with others because I do believe that this board and being able to express the frustions and have questions answered made it so much better....it prepared me for what went on. I wasn't ever surprised---and knew that mom was in the best place!

xxoo
karen

Guess it was just a matter or time. Bill fell out of bed Sat. night and got a cut over his eye. I got I'm not sure if I will see the regular nurse before he goes into respite on Thur., but if she doesn't mention it, I will bring it up. I have no idea if he will wear it, but it would save me two loads of wash every morning. Has anyone had any experience with using one?

Things still going well and I will try for a picture Jackie, but those little things are hard to take a picture of. They have really kept me entertained though.

Question for anyone. Have you had a full time aide come in for the day, and how much do they usualy charge for an 8 hour day?

Everyone take care and I'll be back soon.

Joyce--I'm sorry about Bill's fall. Re your caregiver question,
around the DC metro area, CNA's run $16-$20 or so
per hour through an agency. You may be able to find one
less expensive if they are not affiliated with an agency.
Then you don't have the protection of background checks
and insurance coverage, however. You also have nowhere
to go should your caregiver be unable to come for some
reason, whereas an agency would presumably come up
with a substitute. If you go through an agency, remember
that you are the boss (I'm sure I really didn't have to tell
you that ), and insist on interviewing the potential
caregiver directly. Most will accomodate. Also, be sure
the agency's caregivers are employees (and thus covered
by the agency's insurance) and not just subcontractors
(where the insurance issue--let alone background checks--
could presumably fall through the cracks).
Hope that's helpful.
Wishing you the best of luck--
Carol

Thanks Carol,
I was asking the question because a friend of mine is now taking care of her ex BIL 24/7 and his family is being real good (their opinion) by paying her $100 a week. I told her she was an idiot because they were just using her. They're using her like they would a nursing home. He is living in her home and the wife will come and visit him when she can

I already told her I thought the rate was around $20 an hour, but now I have your experience to back up this figure.

Holy Schmoly! That is a crime!
Glad you're there, Joyce, to help the poor dear with her spine!
Carol

Joyce: my sibs would argue about that amount being unreasonable..then again when I suggested perhaps they pay me or hire someone got told they couldn't pay me and couldn't afford to pay someone and since I wasn't working....later it got to the point I was in trouble for helping mom by being there and that I was the reason she wasn't placed anywhere!---(washington is very strick about placement and unless its done thru the courts---if she were to say I want to go home they didn't have a choice...and until she developed diabetes she could have done easy....)
I do wish you luck with Bill...it is hard to take care of someone---I was kinda lucky with the factor I was able to leave mom's house (she never really left my mind but...)I do keep you in my prayers!

On my front: It is hitting me about mom---I was thinking that perhaps I could just breeze on thru but it hit hard this week with the one week anniversary thing---but I'll get thru. my sister out of state finally called this am...didn't take the call---still a little raw around the edges over the ring comment---(that she needed it for emotional support an didn't care if anyone else needed it)--we are now using some of what was said as points of humor around our house....I am trying to get over the bitterness and just move on....POA has given me as a reference for her to volunteer with hospice....that is the current delemia---I really can't answer alot of those quesitons about sensitivity to the needs of others, work independently and all the other fun options---I am trying to maintain some form of a relationship but still to close to what has been said to me over the years of how I spoiled mom by being there all the time and what her opinion of hospice was---not even getting into that she never could touch mom at all until apr of this year---then she decided that mom wasn't all that bad after all ---- (I think she found out that others liked mom and this changed her mind---prior to this all I got was "demons and issues" when I begged her to help a bit---and when one geratric doc told us that touch helped with the dementia/altzheimer patients she just backed way off--) dont' really know what to do like I said....to many memories come up at this point.....

well the ladies need computer----and there is a moment of clearing think I will cut down my flowers in the front yard.....we are due for more rain...almost like autumn has hit us way to early...but then again never did have spring here.....

Dear Karen,
So glad to hear you are all hanging in there, and that humor
is helping.
Re your sister's request for your recommendation on her
behalf to hospice, perhaps "less is best." Just don't get
around to it. You don't even have to outright come out
and decline. Just say "yeah, sure," and then don't do it.
Good luck, sweetie,
Carol

Just to let everyone know---sos did get the engagement diamond that dad gave mom....apparently the day after it all she somehow got POA to show it to her and off they went to the jewlrey store to get the diamonds detached----she got to look thru the two little ones and I got the one that I had already sold to mom years ago (it was from a prior engagement---)---poa feels bad --- sos says that it was the way mom wanted it---told POA NO---mom had wrote it down but due to all the conflicts and such I jsut left it to her to give to POA---I didn't want to get mess again!
Did go thru some of what mom had and got some of the things I gave mom over the years---also got this jewelry box and me and the ladies keep smelling it cause it does smell like mom...(I also know sos wanted it as well)---I am not taking calls at this time from sos and doubt she will try to call me....poa even reminded me that mom wasn't even in the grave by the time all this snaching took place....now sos is after poa to lower the price for a quick sale on mom's place.....I told poa the only time I wanted a quick sale was if mom were to need the money for the home----as of now whatever
the ladies have reminded me (I have as well) that it isn't the things that matter its what happened during the time we had with grandma and the rest are just
"things"---so still raw from the whole thing---still amazed that it has hit as hard as it did but working thru---love her and still miss the mom that I knew---
xxoo
karen

Oh Karen I know how you must feel about his ring thing. I had a cousin that passed away and she had always told me that she wanted me to have my grandmothers cameo ring. She was the oldest cousin in the family. She knew I would treasure it, and only asked that I passed it on to someone deserving of it one day. When she died a few years ago, her brother knew this, and decided that it wasn't what "he" wanted to do. I was heartbroken. I know it was written down, as she wrote everything down that she wanted people to have. To not fufill her wishes was horrible. It wasn't the ring, it was what she had asked of me. I cried for weeks, and finally decided that I could live with myself, but could he?

So I'm sure she's up in heaven telling me that it wasn't my fault, and laughing at her brother for his thoughtless ways. And the funniest thing was although it was very old, it was virtually worthless. But his wife told me that he was going to have it appraised in Italy and see the value first. It was faded and had a crack on the bottom of the ring. What people do for money and not sentiment huh? But one thing "we" can be sure of is that we do things from our hearts, and not how much we'll have left in our pockets.

So know that you did the very best in letting this go. You will never ever have anything to feel guilty about. You won't be able to say the same about the others. And they will have to live with their guilt. And I wouldn't think that that can be easy.

Jackie

Jackie: (oddly enough mom's name as well...)----its just everything that happened and how sos handled taking away everything that anyone would want...yesterday told POA she was "considering" returning the birthstone ring "[font=Comic Sans MS]its mine 99% ownership of one who has it....emotional reasons and others may need it but tough"[/font] so in that respect it is tarnished....I'm just working thru everything....mom did write things down but in her paranoid arena of dementia/sundowning who knows what she did with that one.....I always just told her give it to poa---I figured that the others would end up not listening anyways....I just thought that perhaps I HAD a chance with the talks between poa and me---I kinda wasn't expecting it/yet expecting it knowing how controling she can be for poa....Now poa is talking with bro and sil and I'm sure confirming to sil that our family is just losers---poa is also upset that our family is falling apart---(don't know where she has been --- its been apart for longer than mom's illness and she was part of the problem---I gave that "Walton" family dream up long ago... ) --- Its just been everything and anything---
The ladies last night pulled up pics of mom a year ago....whoa! that was sad! it was when she was really going downhill and I was over there trying to figure out what avenues to pursue to get groceries (FOOD-go figure!) and whatever else she needed....just brought back what all had gone on and how these "devoted" children really weren't around....and sos for that "emotional" support...I think not...I just keep looking at hubby and saying his family was so much better---when the older brother/poa said "mom needs" this or that they all moved---I even argued that we had baby twins and please I needed him at home at times (he was working OT/school and whatever else) but got shot down really quick so I caught on....
But I am working thru alot of it----still so very very surprised at how hard mom's death hit....POA talked about it for a bit with me saying her and sos were surprised at me since I wanted moms death...(poa has wanted mom to die since dad in 98--all I've heard is she should have died with him...blah blah blah) I was the one angered at that---however, seeing mom these last few months and the toll it was taking on her...yeah---I knew from this board and reading it was just getting worse...along with many professionals saying there wasn't a quality of life--just a haze of drugs used to control the disease...
anyways---thanks, I'm sure mom is surprised to a point about what all went on before she even was buried and none of it was what she wanted....she wouldn't have been surprised because she always told me to "hide" things from the others because she knew...but oh well!

xxoo
karen

Karen:
I'm sorry you have had to go through all this with your siblings. And I do believe in the old saying "what goes around, comes around". Sometimes it just takes longer than we wish it would..... However, and I know this probably doesn't help you, this kind of behavior isn't that all unusual. from what I have seen. Even in families where there isn't strife, people can change when it comes to dividing things. Rmember, things are just things. Period.

I have a very greedy SIL. When we moved my mom from her home to assisted living a year ago, my brother and I agreed to have our children and us make a list of some items of mom's that we would like, and only he and I would take turns choosing, using our lists. Well, my girls listed things like a game they played with my dad when they were little, or a cup they would use when they stayed with my folks. Nothing of monetary value, but instead of great sentimental value. So when my brother and I started choosing items, he was completely baffled at the items I was taking. Of course, the items HE chose were all the high-value antique furniture pieces, silver, crystal, dishes etc. In fact, his wife had listed EVERY piece of furniture my mother owned-----and she owned a LOT. SIL wanted to furnish not only her house but her kids homes too. And she did. My brother would not allow me to have an estate sale; instead, he and his wife took everything except the few things my girls and I chose.

Now, at first I was really upset about how they wanted everything and then I realized that my mom had ALREADY given me the things she knew I would love. For the past twenty years, she would give me something special that had "come down through the family" for my birthday and CHristmas....these weren't big things, perhaps a crystal bowl, or an antique fan, but they were things that had family history and that she knew I would like. Somehow, I think mom was very aware of the greedy SIL, and she made sure she gave me those things she knew I would treasure. (none of which I asked for).

By the way, my brother and SIL have visited my mom only ONCE in the past year.

So know in your heart that you did everything you could for your mom; you showed your love by doing the best you could for her under some very difficult circumstances. And she knows that, Karen.

Lynne