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Old 08-18-2014, 03:07 PM   #241
Way too much time on my hands!
 
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Kati, that sounds like it's just what your daughter needs, not to mention what YOU need. Being a parent is hard under the BEST of circumstances. Throw in special challenges and it can be beyond nerve-wracking!
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Old 08-18-2014, 04:52 PM   #242
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Kati- PM me if you want. I've done a lot of work in the past with the DD kids and adults. I've worked in mental health and substance use for the last 10 years, but my roots are with MR/DD.
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Old 08-18-2014, 04:57 PM   #243
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I love our kids. Thats something my daughters would do also!

I am finishing up a quilt for my sister and knitting a pair of socks for my stepsister and then I am off to sew some cute outfits for the first week of school for the two older girls.
Great news on our end! The human services for developmentally disabled children called me back and she is going to set up an appointment with us to start the application process so that my DD can get some help. She said it definitely sounds like we qualify due to the diagnosis'. She said they'll pay for weighted blankets, and even an IPOD or special audio sensory stuff..um, just anything she needs to be more successful.
Even respite care so I can get away for a few hours for me!!
At school she is going to go 3 hours a day and get therapy so that will be a break also.
I am so thankful my husband is finally on board with all this. He's been working 6 days a week and I kind of get the feeling coming home isn't that enjoyable because of how much stress has been going on. Horrible.

I don't talk about it much on here because I don't want any one to get the idea that having a child with special needs is a huge burden, I dump enough of my crazy as it is. LOL
but wow. Lately its been super stressful in the house because her imaginary friends have been keeping her awake at night and thus keeping me and I have been at my wits end with just...stress.
And I tend to think its all my own doing...I just go into shut down mode sometimes and start not caring.
Today was such an encouragement - there is help out there and things are getting better.

Mercy, Party, I must have missed or forgotten something major because I had no idea you and your DH were dealing with this kind of stress. It's probably stressful for your other children as well. I'm so glad there's help available, and that you are wisely seeking it. Please keep us posted, and in the meantime our prayers are with you and all your family. I don't know exactly what your DD's diagnosis is, but do know from dealing with a husband whose reality cog has slipped to the point where he's often delusional, this isn't something one person can deal with alone. We love our special needs family members, but sometimes the best way to love them is to get help with them.
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Old 08-18-2014, 07:13 PM   #244
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Kati, I will keep you and your family in my prayers. I hope everything works out for you and your daughter.
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Old 08-18-2014, 11:49 PM   #245
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Kati, I'm so glad that you're getting help with that. Sleep is a precious, precious thing, and we all need it to function properly. I hope your home gets some much needed peace.
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Old 08-19-2014, 04:07 AM   #246
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Kati, I'm so glad you have found some help. I hope everything goes well.
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Old 08-19-2014, 07:38 AM   #247
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Dawn, you have to love a DD that even notices anything to do with their parents likes/dislikes and appearance, much less encourages you to get what you like! She's a gem!

Kati, I'm so sorry this has been so stressful for your family, but so glad you've found some great resources for support. I hope things get much better for your entire family!

Big rain/thunderstorm early this morning! It got me out of bed about 1/2 hour early, but was so worth the lost sleep. Quite a downpour - about an inch in about 1/2 hour's time (for perspective, our August average rain fall is just over an inch) but it has soaked in nicely with no apparent flooding. Nice to have the dust washed off the world. Of course, my hair will be crazy/frizzy now. Looks like a ponytail or French braid day for me!
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Old 08-19-2014, 10:12 AM   #248
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WOw Thank you all.
Tomorrow is day one of intake at the center. I'll let you all know how it goes!

Carly, *hugs* When do you find out about your job?
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Old 08-19-2014, 11:25 AM   #249
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Hi JBs!! I got home safe and sound in the wee hours of this morning. Walked through my door at one a.m. but my body was reminding me it was four a.m. PA time. I just flopped into bed and didn't regain consciousness until nine this morning. There will be several naps in my future today!

I'm so looking forward to a good DD and getting back into a routine. Well, at least for 10 days until I head to Hawaii. Yay!

I gained only 3 pounds. I say "only" because being around my family and all the wonderful food, I thought for sure I would gain 10!! ha! JUDDD was obviously at work protecting me. And, I didn't go overboard. I managed to have several fast-5 type days so I wouldn't feel guilty indulging when I couldn't resist.

There was lots of laughter and lots of tears. My sister did really well and there were many moments of recognition in her eyes and lots of smiles from her. She truly was "home".

Good to be back here with you all.
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Old 08-19-2014, 11:52 AM   #250
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Originally Posted by Yam-Yam View Post
Good to be back here with you all.
It's so good to see you back here with us Yam-Yam. And it must have been such serendipity that there were moments of recognition.

Sleep, recover, be well.
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Old 08-19-2014, 12:03 PM   #251
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Yam-Yam, that sounds like a great trip!
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Old 08-19-2014, 12:23 PM   #252
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Just thought I'd fly by and mention that Dr. Mercola has a 53 minute video interview with Dr. Michael Moseley on his website this morning. Pretty interesting!
Wow, I have really enjoyed catching up on all the posts. I think I'm totally caught up! Whew! I won't be able to comment to everyone, but I sure love you peeps!

LCG: Thanks for the heads up on the interview. Just finished watching it and there was a lot of good info there. I jumped over to Amazon and ordered Moseley's book Fast Exercise for my Kindle. Can't wait to read that. Sounds like more good input for fitness.

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It's so good to see you back here with us Yam-Yam. And it must have been such serendipity that there were moments of recognition.

Sleep, recover, be well.
SS: I teared up a bit when I was reading your posts. You are amazing. And, wowzers, I hadn't realized you lost 60 pounds! that's amazing. I'm going to get there someday. Slowly but surely. I feel good about maintaining what I've lost for now and how JUDDD really gives me all the tools to keep getting healthier and lighter.


Kati: Hugs to you, Girl. You are a wonderful mother and keep a lot of spinning plates going.

Beadelia: I thought about you a lot when I was spending time with my sister. I even told my other two sisters about you and I told my niece who is faithfully taking care of her mother. She has taken time off from her job to care for her Mom full time, but her 6 months of time off is running out. She does not know what to do but she will absolutely hear nothing of placing her Mom in some kind of care facility full time.

Oh my, I keep realizing that I am emotionally drained. I think it's nap time!
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Old 08-19-2014, 12:28 PM   #253
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Yam-Yam, that sounds like a great trip!

It really was. One of my brothers hosted a big family BBQ at his home Saturday. Nieces, nephews, grand kids, great grand kids, babies crawling all over me and everyone! One little guy named Sammy kept calling me Gramma. lol! He is my great-great nephew. The weather cooperated and was lovely. Everyone broke out their acoustic guitars and we had a jam session with lots of singing (and crying. and laughing.)

Lots of memories shared and we all realize how time is slipping away from us. We have lost three of our siblings in recent years so every moment we spend together is precious.
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Old 08-19-2014, 02:41 PM   #254
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Yam, I'm so glad you had such a great visit with your family. So important. I hope you get a little R&R between vacations!
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Old 08-19-2014, 04:43 PM   #255
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Yam, so glad you had a good trip.
You will cherish your memories of this special time with your family.
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Old 08-19-2014, 05:38 PM   #256
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Carly, *hugs* When do you find out about your job?
I thought I was going to hear something today, but nope. If it's meant to be than it will, if not, than I'll keep looking.

Yam-Yam your trip/time with family sounded like it was just perfect.
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Old 08-19-2014, 11:39 PM   #257
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Fingers crossed for you Carly! I just found out that I got a new job yesterday, so I'm passing the good job vibes onto you!!
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Old 08-20-2014, 03:28 AM   #258
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Fingers crossed for you Carly! I just found out that I got a new job yesterday, so I'm passing the good job vibes onto you!!
Thanks!
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Old 08-20-2014, 04:26 AM   #259
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Yam, that sounds like a lovely trip. Time with family *is* so precious.


Carly, I hope everything works out like you want.

Kwerp, congrats on your new job!!

I'm just killing time this morning, not wanting to get ready for work lol...speaking of family and health, my brother is back in the hospital with tumors on his bladder. He just recently had a hip replacement in July and also had surgery for bladder cancer this year. He has really been through some tough times. They're hoping he will not have to have surgery again, and waiting for news from the doctors and tests.

Hope everyone has a good Wed.
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Old 08-20-2014, 07:52 AM   #260
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Prayers for your family to you Cindy

I can totally relate not having the motivation to get up and moving today. Missing my friends and family lots lately. Couldn't even get motivated at the gym yesterday and ended up leaving... on and UD too . I pay astronomical amounts of money for my membership so it keeps mee motivated to go every day, plus.. it's sort of a palace. 3rd DD today, so far so good. Lots of your tips have also worked for me !


Ya'll is the best Happy Wednesday everyone! Almost half way through!
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Old 08-20-2014, 09:07 AM   #261
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Yam, that sounds like a lovely trip. Time with family *is* so precious.


Carly, I hope everything works out like you want.

Kwerp, congrats on your new job!!

I'm just killing time this morning, not wanting to get ready for work lol...speaking of family and health, my brother is back in the hospital with tumors on his bladder. He just recently had a hip replacement in July and also had surgery for bladder cancer this year. He has really been through some tough times. They're hoping he will not have to have surgery again, and waiting for news from the doctors and tests.

Hope everyone has a good Wed.
So sorry to hear about all your brother is going through. My prayers will be with him and you, too, as this is really an emotional time. It's just very tough to see our siblings go through serious health problems. Believe me, I know.

I was just thinking this morning how my situation of coming from a big family is both a blessing and a curse. I'm number nine of ten siblings. The blessing of having them and all their love and support all these years is wonderful. The curse and sadness is watching my older siblings suffer with age related illnesses and passing on before me.

So, I hope your brother does not have to suffer through surgery again so soon. Big hugs to you. and loving thoughts and fervent prayers.
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Old 08-20-2014, 09:15 AM   #262
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Well, have I stated lately that I LOVE JUDDD AND ALL THE JBS!!!!!!?

I do!

So much support here. I spent lots of time catching up on reading yesterday and in the process felt a lot of motivation to have a great and satisfying DD on my first day back home. It was a high DD, but everything I ate was veggies and tuna and two enlighten frozen fudge bars which have 8 grams of fiber and 5 grams of protein and only 70 calories each.

The scale was down -4.4 pounds this morning! Juddd is forgiving!!

I was pretty sure that the 3 pound gain yesterday morning was airplane fluid retention. I always retain fluid during long airplane flights and this time was no exception.

Yesterday I drank lots of water and tea and spent a lot of time in the little girl's room draining it all out plus more!

My goal for August is to lose at least 3 pounds, so that means I have 1.6 to go and I know I can do it. Losing 5 would be even better, but my body seems to like averaging only 3 per month. (In July it was 5 but that may have been because of my hospital stay and the fact that they starved me while I was there!!!)

OK, I am definitely a blabbermouth like it now says above my AVI. LOL!
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Old 08-20-2014, 10:45 AM   #263
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Beadelia: I thought about you a lot when I was spending time with my sister. I even told my other two sisters about you and I told my niece who is faithfully taking care of her mother. She has taken time off from her job to care for her Mom full time, but her 6 months of time off is running out. She does not know what to do but she will absolutely hear nothing of placing her Mom in some kind of care facility full time.

Oh my, I keep realizing that I am emotionally drained. I think it's nap time!

Welcome back, Yam-Yam. I’m so glad your visit with your family went so well, and that your sister was “present” to you all for so much of the time. But yes, I can see how you’d be pretty drained both physically and emotionally by now.

My heart aches for your niece (and for the rest of you too) as she faces the question of how best to care for her mother. Putting DH into assisted living was the hardest thing I ever had to do, and I fought the idea for a long time even while family members were urging me to do it both for his sake and for mine. When he was first diagnosed I promised that I would take care of him, and I felt I was going back on that promise. But there came a time when even I realized I wasn’t the best person for the job. It takes a team to care for someone with advanced Alzheimers. A few of the factors that went into my decision were:

1. I could no longer keep him safe at home. He would leave the house without telling me; he went into a neighbor’s house thinking it was ours (fortunately, they knew him and his illness); he would turn the gas fireplace on but not light it; he would try to take pills without knowing what they were for (I had to hide all potentially dangerous meds) etc. He even tried to fix a light socket without throwing the breaker switch!
2. I couldn’t keep him safe away from home either, because his awareness of his surroundings and of dangers was so diminished. Like a toddler, he’d walk in front of cars or just suddenly disappear when we were in the market. It was a nightmare.
3. I realized that if I suddenly had a medical emergency DH would not be able to summon help, and even after help came, he would not be able to care for himself. My sister and niece would have to find whatever place was immediately available for him, which might not be the best place, and he’d be thrown in among strangers with no help in the transition. (My sister and niece would have tried, but he’d stopped recognizing them quite a while before, although they lived close by.) I needed to find the right place for him before an emergency arose, and be available to help him adjust to a new living situation and a new phase of his life.
4. DH needed more social interaction than I could give him, but refused to go to adult day care or take part in any activities. He also refused to have a “sitter” while I got a little respite.
5. I was about to drop in my tracks from stress and lack of sleep, and could not take care of my own medical problems because I needed to take care of my husband instead.

Fortunately, a good friend from church was a Eucharistic minister to Catholic residents in several area nursing homes, and she recommended one in particular. (And told me which one to avoid at all costs!) We visited several times and talked with the residents, who acted happy and said positive things about it. We were also invited to some events there, so DH could meet other people and get a feel for the place. My niece also went with me to talk with the director and inspect the place, which helped because she could ask questions too and give me her ideas and opinions. DH was furious for several months at being placed there, but he has now come to love living there. It has the following features your niece will want to look for.

1. The general atmosphere is very homelike – there are comfortable furnishings in the public areas, and everything is very attractive. There is nothing institutional about it.
2. DH has his own little “apartment” with a living area, bath, and bedroom area, and we were able to furnish it completely with things from home. Your sister needs to be able to have familiar belongings around her, including her own bed and favorite chair. Every woman wants her own nest. DH can have privacy, but also gets help with showering, etc.
3. The staff is very caring and affectionate toward the residents, even though the latter can be very difficult at times.
4. We were invited to eat there, and the food was good.
5. When you walk in, there are no bad smells and no institutional smells.
6. There is an activities director and lots of activities – bingo, art and craft classes with simple projects, and people who come in to give concerts, chiefly of old songs the residents remember from when they were young. Most of these people encourage the residents to sing along. There are also some wonderful people from a local Baptist church who come every Sunday afternoon to hold a service that includes singing old-timey gospel hymns. Even when there are no activities going on, residents can gather in the comfortable lounge to watch TV together and chat (but can also have their own TVs), and they interact with each other in the dining room. The increased social interaction and mental stimulation have actually helped DH improve.
7. There is a large, tree-shaded outside area that includes two covered patios and is completely enclosed, and DH may go there whenever he chooses.
8. Family may visit any time of day or night, and I do, so I know that the care I see DH receiving is the care he always receives. In fact, I stayed with DH the first two nights to help with the transition.
9. There is a house doctor who visits once a week or as needed, or you can continue with your own doctor as you wish. There is also a nurse on staff to oversee the aides.
10. While DH is currently in “memory care light,” there is a separate memory care wing for those with more advanced dementia. My niece and I visited that as well, and were impressed with the cleanliness, the home-like atmosphere and the way people there were obviously well cared for. When the time comes, DH won’t have to be completely uprooted a second time in order to receive more intense care.

Unless your niece can get someone reliable to come in to look after her mother while she is at work, or can find a good adult day care, she will eventually have to find an assisted living facility, and it’s best to have one selected ahead of actual need. The best ones usually have waiting lists. Senior services in your sister’s area may be able to help her find a good place, and she may have friends who have recommendations. There is also a helpful website called A Place for Mom.

Well, this post must be a record length even for me, but since others on this forum might be facing this same situation now or in the future, I thought I’d put it here rather doing a PM. Please feel free to share this with your niece or anyone else. My prayers are with all of you.
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Old 08-20-2014, 11:03 AM   #264
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PS -- It occurred to me that I hadn't mentioned security. I've visited assisted living places and nursing homes where the only thing between residents and the outside world was staff vigilance, and of course staff are human, and humans can fail. Or blink. Where DH is, the outside doors, except to the enclosed garden, have a key code which is given to family members and an alarm that sounds if the door is open longer than it takes for a fairly agile person to go through. Everybody else has to ring for admittance, and residents can't wander away.
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Old 08-20-2014, 11:09 AM   #265
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Yam, that sounds like a lovely trip. Time with family *is* so precious.


Carly, I hope everything works out like you want.

Kwerp, congrats on your new job!!

I'm just killing time this morning, not wanting to get ready for work lol...speaking of family and health, my brother is back in the hospital with tumors on his bladder. He just recently had a hip replacement in July and also had surgery for bladder cancer this year. He has really been through some tough times. They're hoping he will not have to have surgery again, and waiting for news from the doctors and tests.

Hope everyone has a good Wed.

Darn, I'm so sorry your brother has this, and that you have this big worry. My aunt (the one who turns 98 next month) fought bladder cancer for years. It just kept coming back and coming back, but they finally beat it with a combination of surgery and BCG treatments. She hasn't had a recurrence in several years. We will pray that your brother's case has an equally happy outcome!
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Old 08-20-2014, 12:10 PM   #266
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Cindy, I'm so sorry to hear about your brother's health struggles. I hope he won't have to undergo more surgery and it can be handled effectively.

NGNG, I hope your DD is going well and more easily today. Sometimes they are just plain tough. Then you'll surprise yourself by having a really easy one. I hope that for you!

Beadelia, your post about care homes is fantastic. Very helpful, and also hopeful that there actually are great places like that out there. And you r comment about security is very important Several years ago my mom and I were out and about, driving down a very busy street (6 lanes) and there was a little old lady walking along the center barricade. We passed her, looked at each other and said "We have to go back!" We turned around and when we got back to her, there was a nice man who had also stopped, but was a bit afraid to try to get her into his car for obvious reasons. He was very relieved when we pulled up. This was before cell phones were ubiquitous, and none of us had one. So we got her in the car and drove her to the nearest fire station. They and the police were able to find where she belonged at a nearby nursing home. She had a purse, but it was full of string and rocks and other little odds and ends, but no ID. Very scary!
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Old 08-20-2014, 04:51 PM   #267
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Cindy sending for you and your brother.
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Old 08-20-2014, 07:21 PM   #268
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Cindy, I'm so sorry to hear about your brother's health struggles. I hope he won't have to undergo more surgery and it can be handled effectively.

NGNG, I hope your DD is going well and more easily today. Sometimes they are just plain tough. Then you'll surprise yourself by having a really easy one. I hope that for you!

Beadelia, your post about care homes is fantastic. Very helpful, and also hopeful that there actually are great places like that out there. And you r comment about security is very important Several years ago my mom and I were out and about, driving down a very busy street (6 lanes) and there was a little old lady walking along the center barricade. We passed her, looked at each other and said "We have to go back!" We turned around and when we got back to her, there was a nice man who had also stopped, but was a bit afraid to try to get her into his car for obvious reasons. He was very relieved when we pulled up. This was before cell phones were ubiquitous, and none of us had one. So we got her in the car and drove her to the nearest fire station. They and the police were able to find where she belonged at a nearby nursing home. She had a purse, but it was full of string and rocks and other little odds and ends, but no ID. Very scary!
LCG, that is one scary story. Thank heaven you and your mom and the gentleman you mentioned recognized there was something wrong and cared enough to stop. I'm sure that many who drove by realized that something didn't look right but either didn't want to get involved or just shrugged it off as being odd but probably OK and anyway, it wasn't any of their business.

Years ago DH and I saw a woman collapse at a bus stop at a busy highway. She was nicely dressed but confused, and we called for help. The policeman who came said she was from the nursing home at the top of the hill, and that they were always retrieving oldsters and taking them back there. My question was, if they were "always" having to take wandering seniors back to the nursing home, why wasn't something done to keep them from wandering right out the door!
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Old 08-20-2014, 07:48 PM   #269
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I'm just killing time this morning, not wanting to get ready for work lol...speaking of family and health, my brother is back in the hospital with tumors on his bladder. He just recently had a hip replacement in July and also had surgery for bladder cancer this year. He has really been through some tough times. They're hoping he will not have to have surgery again, and waiting for news from the doctors and tests.
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Old 08-20-2014, 11:59 PM   #270
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Thoughts and to those of you who are going through trying times.
Positive vibes for those dealing with DDs today.
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