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Mom is on hospice, has late stage dementia. How can each day be so different from the others?!?! Sometimes all she does is sleep, other days she is wakeful and so very sweet. I have had her in my home 2.5 months because her money is gone, but I have sitter help (thanks to SS and VA) when I really need it. I have no reason to complain, and yet, it is still hard. My husband has been out of town a lot and I miss him, but I have friends and family to support me. I am so lucky and blessed but still feel emptied so often. Can't get around to planning her funeral. I'm sad and can't express that to many because I have it "so good". I am glad to be able to help her in this last stage and I feel guilty for this "poor me" feeling I have sometimes. One sister is totally absent (and will blame it somehow on me) and the other is here for a couple of hours every other week or so, and I really prefer being the involved one, but worry for them about how they will process it when Mother goes. (Normal horrible family dynamics apply.)
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Thank you so much Rosella, wow 8 years. how long have you been caring for her in your home? Sad but yes true! I understand completly. I have said myself it would be so much easier if she couldnt remember anything. i would be more than glad to hire somone to come sit with her and know plenty of trustworthy people who could if it was up to me. She really dosnt need somone with her at all times. she uses a walker hasnt had problems with falling, yet! She has one of those emergency buttons even. the only times she ever has to awnser it is when the cat steps on it. She had it at her last house and when she moved here we decided it would be a good idea for her to have it, just in case she falls in the night going to the bathroom. Its mostly behavioral right now. I do a lot of things she is physically capable of doing just because we started out that way when she moved here. I lift her into bed even. put her slipper socks on her and help her take blood pressure and meds at night. Draw upn her insulin. The rest of the day she does it all on her own. I dont mind that stuff. that stuff i can handle. I hope this stage passses quickly. My Mil used to say she thought aunt was losing her mind. she has been gone for almost 2 years now. Maybe shes had this for a long time already.
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I read all of your posts. ASG, you asked the question: When will my aunt lose her memory completely? I guess it changes from person to person. 8 years ago my mother was completely herself, she took 2 undergrounds and 1 train to come to see me in the country, she did the cooking, she woke up early to help me clean my house... And from that moment on it was a slippery slope! Every day she loses something and she is more and more disoriented and confused. During the first years of her disease she tried to behave nornally and when she realized she had done or said something wrong, she tried to hide it. That is the worst period because it's difficult to help them. They claim they are independent, they say they don't need any help...I think your aunt is more or less that stage. I think you have to outsmart her, If she doesn't want you to be with her when she talks to her doctor, try to talk to her doctor yourself while she is doing something else. You can't leave the things in her hands. I know this is difficult. I took my mother with me when she couldn't really be alone anymore; I can't imagine what she has done when she lived alone in her house. I think we dodged many bullets. We have been lucky she didn't set the house on fire!
My mother is more manageable now because she is sicker. Sad to say, but true...
A big hug and GOOD LUCK to everyone.
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I have to get some sleep.....just wanted to say goodnight to all......have a dr's appt in the morning myself.......zzzzzzzzzzzzzzzzzzzzzzz
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Starri, I am right there with you, too. I am the 2nd oldest, the plain one, the smart one, the calming one, the one who was no trouble (cause I never got caught), I left the home state when I married, got the best grades in school, therefore could do no wrong......so here I sit without a clue, never had kids to raise, no experience to fall back on, nearest family 900 mi away, and the responsibility of a person's life who could die any day ! I was in a very bad place when I came here to this site. I was so angry about having to quit work, losing adult conversation, no one to tell things to except one sister who cared but couldn't console, mad at the friends who don't understand, at the loss of freedom, and when I wasn't angry or mad, I was just pidded off in general. Does that sound familiar?

I am a lot more compassionate, more tender in my dealings with mom, no way near as angry, AND I actually smile and laugh more that I ever have. Not that my BP is going down, but enough to see some humor in what I deal with every day. Getting help to come in has done most of that. I realize I can't do it all , there is nothing to prove by doing it all, and I am not feeling guilty for not doing it all. Let me know if any of this helps.
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Seeme, how right I believe you are, she knows about Jerry's condition and I know that she would do her best to keep from doing "bad" in front of him..she does the same in front of the other brothers, makes it look like I am lying when I say she's having bad days, getting confused, etc.. the two eldest are not around much if any, don't talk with her long enough to get a clue, and baby brother can't remember from moment to moment, so there is no way he is going to see it.

It probably sounds selfish of me, but I would like her to have a good day or so with me, they've always seen me as the strong one, the one who would get things done, etc..truth of the fact? that person is a fake, I put up the front because it has to be done.

right now I want to run, and run as far and as fast as I can, I don't want this responsibility but there is no one else for her. Baby brother would try, but try is all he can do. Thanks for listening.
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Well, good news for Ms. M, she will not have to have a transfusion this week and will not have to go back to the Dr. for a month... maybe some of her stress is being relieved.. Sonny and I went for our walk, took a little longer because he was picking up sticks out of people's yards, stopping to listen to the birds, going up in yards looking at flowers.. I just let him go, he was enjoying himself, not hurting anything and he was happy. He was very disoriented today... couldn't find the bathroom. But he is so sweet, I just point and off he goes.. I am constantly amazed at how patient Ms. M. is with him, but you can tell she is tired, I am treading carefully in this situation, She has taken care of him for a very long time, found out today they have been married 63 years....so when she tells him to eat his broccoli, he does, as long as I am setting there.. If I didn't cook it, he won't eat it... I am "That Lady". the one that sets outside with him and I listen to the only story he remebers about being a lineman...
I hate this disease, I hate it.. I wonder how he is going to be a year from now... I watched Ruth decline so fast the last year.. is he still going to be sweet???
Hope everyone had a good day, my brain is fried from hardly any sleep and then waking up at 4 and could not get back to sleep..... so I will probably not be back this evening,,, hugs to everyone,,, catch ya'll tomorrow...
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My dad passed away when he was 98, probably since he was 70, we heard all the aches, pains, wah-wah's that he had.. " I just want to die", We would hear this when we would go visit, or he would be in the hospital for some imaginary problem... one day my sister was so sick of hearing him say he wanted to die, she said/, "THEN STOP CALLING 911!!!!". Didn't stop his whining but we had a good laugh...
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Starri....My experience with my mom is pretty much the same, but her reason makes semse in a way. Your mom is aware of your bro's epilepsy, right? I'll bet she has a good day for him because that is what Mothrs do for their children....whatever they can no matter the cost to them. My mom does the same with my sisters and her helper. But when I get home I am the one who takes care of her, so she will drop the act and be her true self....which is too tired to go anywhere or do anything....she no longer puts on a front......so yeah, it may seen like she is faking it.

Now if you have other longer running issues with the past, I can't answer to that. I just know I was always the one who took charge, and she lets me and wants me to do that now.
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Yeah I do sometimes think she fakes some things. It's weird you can never tell, she complains so much that you don't know when it's real and when it's not. She wakes up telling me what all is wrong with her and goes to bed telling me. She has many things wrong with her but she likes to add. Like she will say, "my breast hurts, I'm worried I might have breast cancer." She got a tick on her toe, probably from my dog cause she rarely goes out, anyway, she was so worried about that and said, "I've been cold all day," " you think it's from that tick?" If she does go out of the house, she thinks she has an earache. She has nose spray, ear drops, eye drops, enhaler, cough syrup, mucinex all in addition to her regular meds. She thinks she has to have these things. She is constantly asking me to check something on her. "Look and see if you see anything on my neck, back, arm, etc. " I think I feel a lum" Geez, can't you be happy with all the things you already have wrong with you without adding to them. She loves being sick. She wants people to feel sorry for her. She says she is this way because she had 7 children. I know other women who have had 7 or more and they are fine. I love her, but man she is a hypochondriac!
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hey ya'll, not much in the poo department to complain about, just trying to make sure that she does. I came over after getting a few hours sleep, to find out those two (Brother and Mother) got confused again, and got into her pill boxes when there was no need for it, going to have to put them up, can't afford to risk them accidently overdosing.

Going to piss them both off I am sure, but I have to do what I have to do, question for you? do you ever think that the person you are caring for is "faking" it sometimes? I came over this afternoon, my brother said she's been having a great day, I no sooner walk in the house and she's ready for icu or something. I seriously wonder if she is putting on being in pain and such just cause I am here, back when I was younger, the more serious I got about a guy, the worse her "fainting" spells got. My brother has a hard time I know recognizing things but still..

Any way, chat with you later.
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Hi care.....naw.....after a while that poop just burns your sinuses out and you can't smell anything else.....oh what a lovely flower....but have you noticed it smells just like poop?????? When you have to be up to your elbows in poop, you might try smearing a little Vicks in each nostril. Helps with that smell.

So sorry about your Dad. Do any of your sibs help with Mom or are you on your own? I have been taking care of my mil for a year and a half....but no more. Getting some help at least 3 days a week. I have herniated discs in my neck and disc disease in lower back and there is no way I can handle her and she weighs not much over 100 lbs. And doctor's orders say I can't lift over 25 lbs......couldn't do it if I had to pick her up. She's in the hospital right now getting a tune-up so hoping she will be better by the time they spring her.
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Probably the worst day I had was before my dad died. I had moved he and my mother in with me (I still have my mom). Neither were/are very mobile. My mother pooped all over the bed, on herself and fell in the floor so then it got in the carpet. She is large so I had to call 911 to come get her up, I had to get my dad up and put him in his wheelchair (while he looked at me like he had no idea why I was moving him), left him there, sat my mom on the bedside pot, stripped the sheets off, put them in the washer, cleaned the mattress, put clean sheets back on, put my dad back in the bed, put mom in the tub, cleaned her up, put clean clothes back on her, scrubbed the carpet the best I could and then put her back in the bed. Now, I have had to clean up pee and poop many times but this particular day I just thought I couldn't stand anymore. My dad passed shortly after. I felt guilty because I had complained so much about having to take care of both of them. Mom is still a handful but has gotten better about making it at least to the bedside pot (of course that's always fun to clean up too)! Ever just get tired of smelling and seeing poop? Oh by the way, I have 6 siblings!
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Probably the worst day I had was before my dad died. I had moved he and my mother in with me (I still have my mom). Neither were/are very mobile. My mother pooped all over the bed, on herself and fell in the floor so then it got in the carpet. She is large so I had to call 911 to come get her up, I had to get my dad up and put him in his wheelchair (while he looked at me like he had no idea why I was moving him), left him there, sat my mom on the bedside pot, stripped the sheets off, put them in the washer, cleaned the mattress, put clean sheets back on, put my dad back in the bed, put mom in the tub, cleaned her up, put clean clothes back on her, scrubbed the carpet the best I could and then put her back in the bed. Now, I have had to clean up pee and poop many times but this particular day I just thought I couldn't stand anymore. My dad passed shortly after. I felt guilty because I had complained so much about having to take care of both of them. Mom is still a handful but has gotten better about making it at least to the bedside pot (of course that's always fun to clean up too)! Ever just get tired of smelling and seeing poop?
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thats a good one jam !!! lol
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Life Explained:

On the first day, God created the dog and said, "Sit all day by the door of your house and bark at anyone who comes in or walks past. For this, I will give you a life span of twenty years."

The dog said, "That's a long time to be barking. How about only ten years and I'll give you back the other ten?"

So God agreed......

On the second day, God created the monkey and said, "Entertain people, do tricks, and make them laugh. For this, I'll give you a twenty-year life span."

The monkey said, "Monkey tricks for twenty years? That's a pretty long time to perform. How about I give you back ten like the dog did?"

And God agreed......

On the third day, God created the cow and said, "You must go into the field with the farmer all day long and suffer under the sun, have calves and give milk to support the farmer's family. For this, I will give you a life span of sixty years."

The cow said, "That's kind of a tough life you want me to live for sixty years. How about twenty and I'll give back the other forty?"

And God agreed again......

On the fourth day, God created humans and said, "Eat, sleep, play, marry and enjoy your life. For this, I'll give you twenty years."

But the human said, "Only twenty years? Could you possibly give me my twenty, the forty the cow gave back, the ten the monkey gave back, and the ten the dog gave back; that makes eighty, okay?"

"Okay," said God. "You asked for it."

So that is why for our first twenty years, we eat, sleep, play and enjoy ourselves. For the next forty years, we slave in the sun to support our family. For the next ten years, we do monkey tricks to entertain the grandchildren. And for the last ten years, we sit on the front porch and bark at everyone.

Life has now been explained to you.
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Just wanted to share this morning.....to all my friends,

Dear Lord, I thank you for this day. I thank You for my being able to see and to hear this morning. I'm blessed because You are a forgiving God and an understanding God. You have done so much for me and You keep on blessing me. Forgive me this day for everything I have done, said or thought that was not pleasing to you. I ask now for Your forgiveness.

Please keep me safe from all danger and harm. Help me to start this day with a new attitude and plenty of gratitude. Let me make the best of each day to clear my mind so that I can hear from You.

Let me not whine and whimper over things I have no control over. Let me continue to see sin through God's eyes and acknowledge it as evil. And when I sin, let me repent, and confess with my mouth my wrongdoing, and receive the forgiveness of God.

And when this world closes in on me, let me remember Jesus' example -- to slip away and find a quiet place to pray. It's the best response when I'm pushed beyond my limits. I know that when I can't pray, You listen to my heart. Continue to use me to do Your will.

Continue to bless me that I may be a blessing to others. Keep me strong that I may help the weak.. Keep me uplifted that I may have words of encouragement for others. I pray for those who are lost and can't find their way. I pray for those who are misjudged and misunderstood. I pray for those who don't know You intimately. I pray for those who will delete this without sharing it with others. I pray for those who don't believe. But I thank you that I believe.

I believe that God changes people and God changes things. I pray for all my sisters and brothers. For every family member in their households. I pray for peace, love and joy in their homes that they are out of debt and all their needs are met.

I pray that every eye that reads this knows there is no problem, circumstance, or situation greater than God. Every battle is in Your hands for You to fight. I pray that these words be received into the hearts of every eye that sees them and every mouth that confesses them willingly..

This is my prayer.
In Jesus' Name,
Amen.
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Hi Linda......glad to hear hubby only has high BP.....sounds odd but that can be easily controlled. Happy to hear his heart is okay. Don't harass him too much or his pressure will go too high....:)

col was able to tell her doctor yesterday what her address was, but that was about it. Still doesn't know where she is, why or how she got there. Hope she doesn't start harping on makeup when we see her later. Too bad....it's gone. She's getting the fence instead.....:)
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54j- dairy queen sounds good too , pig out on a fav ice cream . yummie
am glad ure havin 4 hrs time to urself . 4 hrs fly by so fast doesnt it ?
i love goodwill , salvaton army , ohh wish it was thurs or fri or sat that u could get away ,, YARD SALES ! i miss em so much . i went to one and i think that is it .
ah well i have enuff junk here anyway lol .

seemeride ! how was the reunion with TED ? hope you all have had a good time . fill us in about it .
JAM - fence sounds great , col s lit home gonna look good when she gets home :-) . bet she ll be happy to be back in her home ,
ah hubby just walked by and smile . i think i ll go and harras him for a while . hes off work this week . took him to hospital last friday , herat was flippin floppin , pains too . ah heart is fine , it was high blood pressure that was stressing his heart out , last week he was on vacation now this week its dr s order to stay home cuz he had the cath done .
you all have a good day .... xoxox
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ASG.....I WISH there were some hot looking guys working.....nope, not even near, you can see where I am....lol. Sitting here looking at some dust on the front of my dresser thinking maybe I ought to do that instead of running down to work on the col's house more. Besides I ran out of carpet shampoo and need to pick some up. Will do that later when we go visit her. Trying to decide where we want to eat supper after seeing her. Not like there are a lot of choices. Maybe Mexican. There is a new Thai place in town and if I can just keep hubby from seeing it.........
When the incontinence started with the col, it was the little spot on the back of her jeans, so we suggested she get Depends. She went out and bought pads, which didn't work. When we moved her here we found a bunch of used, dried up pads under her bathroom sink....saving them in case she ran out....ewwwwwwww! Finally got her in Depends and after trial and error, I have found that since she doesn't like to get up and move, where the pad is glued onto the "panty" on Depends was rubbing her tailbone raw. That's when we went through the hoards of toilet paper and kleenex being stuck in her pants. Then I went to Tena's which are more expensive and harder to find in a larger quantity. She has done the tp bit with those too but not as much. Then I found some Assurance. The legs are cut square and the panty part is a little bigger and they just seem to work better all the way around. Once Aunt gets used to them, she won't complain, but believe me you don't want her sitting around wetting herself all the time. I don't know how to explain the shape the col's house was when we moved her. I would walk in the door and gag, my eyes would water and honest to God, I couldn't stay in there. Then I would smell like that!!! Even now, we have a couple of things in our garage that we took out of her house and with the heat the whole place stinks. But I can't leave the door open or snakes will crawl in. And one is a beautiful Lane cedar chest....guess I could set it outside and see if the sun would bake the smell out. With my luck it would make it worse and ruin it.

54.....glad to hear your morning started off well. What's the weather like? If it's warm I think I would take my favorite book, get something to eat, go to the park, don't forget a blanket to sit on and have myself a nice little picnic. Listen to the birds and just let the world go on around you. I hope you do something fun for yourself.

Howdy to all.................hope you are having a great day....

Love and Hugz,
Jam
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so far so good, cleaned up just fine...no punches!! good thing for me huh?? today is my 4 hours a week off. so excited what should I do go to grocery go to park go to dentist or just sit in a parking lot somewhere and have a good cry. Oh well no sense having a pitty party dont want my eyes to be swollen when I leave the drive way. Shoot I might even go into a dept store...do they still have those? you know where you go and they have clothes and little junk you dont need? Might see if I can find one lol. only a joke hasnt been that long..or has it??
have a great day I plan on it . I HOpe
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Mornign everyone, knock on wood I think todays goanna be a better day, aunt told me last night that it wasn't one of her better days. I told her the good thing was tomarrow was the dawn of a new day. So far so good. Except she keeps telling me I don't need to pick up her new med for her bladder control this week. She says she can just skip a day. They are trying her on a new one cause the other one was so expensive. Her bladder control is getting worse. Re,ember whn I said she was wearing depends and didn't need them, this is gonna sound gross but I started checking her bathroom trash cause the bags started feeling heavy. Yep she was having light wet ones. It started getting worse when she thought she had a uti. No uti. But he changed her from oxybuterol to somthing else. New he's changing her to detrol or somthing. I kinda think maybe she has had a small stroke or tias or somthing. Just a little bit of a drop in her. Anyways.
Did somone say cowbell???? Someone else used a cowbell it drove em nutts. Good luck. Starri, can you tell hospice about your issues with this bed? Request a new one? Somtimes all you have to do is ask. The worse they can do is say no. Ladeeda, hey lady. Hope you have a good day with sonny. Maybe he would like the memory game. I bet he would like to do somthing he thinks is work. Seemer, hope you recover on your day off. Jam, are the guys working in your front yard hot??? I bet I know why you need to go so bad to watch them work. Lol. Some tan city boys pulling weeds for ya? Grab you a glass of tea, plant you a lawn chair on the front porch anf enjoy ;) or if your like me just plant you a chair inside behind a closed windowshade lol. Jk sorry I must have cargiver brain today love you all big big big hugs. To everybody.
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Good Morning Posse!!!!

Hope everyone is doing well. Welcome to 54j. You do have your hands full.....bless your angel heart.....maybe we can put our heads together and see if we can come up with a way to allow you some extra time off to yourself. Only 4 hours and spending that with your sister is not time enough for you to recharge. And what an angel you are for using your time with her!

starri.......sending you hours of uninterrupted sleep.....it sounds like your brother does a real good job of helping with mom when someone else is there also. Maybe that should be his time?

I can hear water running.....front yard guys must be here to finish...will check back later.

Love and Hugz,
Jam
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Love ya seeme and have a good day off, hugs across the miles to you...
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Starri......sorry bro can't handle any more, but that just goes to show you how difficult this all is. At least he gave it a good try....that is more than most sibs will do , believe me. I would have taken his help last year at this time. Please get some sleep and come back to us. Honey, you need some help. Maybe hospice can send someone over so you can get a break from mom? Just so you can get more sleep with the machine? I am as tired when I get up as I am when I go to sleep. If I quit breathing when I sleep, I don't know it, but if I did know it, I might be tempted to not start back up again !!! lol (I think)

My day off today, so I am getting a shower and getting this day started. See you all later this afternoon...........have as good a day as possible.........
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54j...welcome to this crazy place that will keep you sane !!! If anyone can help, it should be Ladee. She has been beaten up by a 92 yo woman !! And proud of it !! Just let us know what is happening. Sounds like hubby is violent (from your profile) and too young for this ALZ. And you have your own problems, too. Whew !! And the patients get all the sleep while the caregiver is beat down before the fight even begins.......come back and talk to us, tell us your stories and cry, laugh and scream with us.....I think I heard Starri this morning. She is only one state away........yeah, I'm sure it was her !!! So keep coming back and we will lift you up when you get knocked down. No one should do what you do alone. We are always here for you, with no judgement, and we will fight with you and care for you. Glad you are here.
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Hey Seeme, we have the type of hospital bed that Hospice furnishes, it's one of the old style I guess, the head and feet are controlled by electric but to raise the bed up and down, it's hand crank, the new hospital beds have sides that lower all the way down below the mattress, this one barely clears the top of the mattress, had to take the one side off so that she could get in and out of the bed. You might want to have a sleep study done, I snore and sleep like a rock, still wake up tired.

We found out I quit breathing 66.4 times per hour for up to 20 seconds at a time. Rather than dragging my cpap back and forth, I've just been leaving it here at the house, and then getting my sleep when I can here.

I have a cow bell that a friend gave me, think I am going to figure out a way to hook that up so if she gets out of bed this evening, I will hear her...that thing will wake the dead. Hope you have a wonderful day, I think I am going to go check my eyelids for light leaks...rofl...
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Morning everyone... Welcome 54j, we are happy you posted with us, and hope you stay and let us get to know you. Don't know what I would do without this sight to go to everyday, meet up with my friends, chat, fuss and fume, vent, and laugh. Sounds as if you have your hands full. Am I understanding that your hubby is violent? Or was that just the way you expressed it? Won't share suggestions until I am clear about what is going on... happy to see you here, keep coming back, you'll make great friends to help you thru ...
Starri, do you have HH or Hospice??? Hospice should provide you with a bed and anything else you may need? Sorry to hear you didn't get any rest. We are so happy you are a part of this thread. That's what you have to do, just jump in and everyone gets to know each other and we don't feel so alone..
ASG, girl, I just couldn't do what you are doing, no way.... I'd have to get stupid with the aunt for talking to my kids that way... What a bossy old thing she is... hmph..
Rossella, glad to hear you had a good time with your friends.. How is your mom? Keep in touch.. love ya
Seeme, today is the day for fun.. enjoy yourself and eat something good for me..
Jam, sounds like things are moving right along.. the house and yard all set up for the col when she comes home.. Hopefully the right meds will be on board. Also hope this caregiver works out... let us know..
Today is my long day as Ms. M has to go for her transfusion today.. It will be Sonny and I, need to find something for him to do, he is bored and that is not good for Alz.
Didn't get much sleep last night, so am going to go get this day started so I can get done, come home and take a nap.... love to all, hugs across the miles..
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pardon me while I scream..it's already started off one of those days, first mom winding up in the chair, confused, then my baby brother deciding that I am trying to run the show when I am simply trying to include him on what is going on, so that he feels like he is being of help, without giving him to much to try and do.

He informed me today that he has done caregiving, he is doing it for our friend, our friend is still capable of taking care of himself, Jerry can't keep track of his own three meds, never mind Mom's 18.

I keep telling myself it's his illness, but I got in his face this morning about his attitude...I've had enough. I've come home to try and get some decent rest, all we have scheduled for today for her is her CNA, she just helps to bathe her, he can handle that.

Going for the bed, see you ladies later.
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Starrri, honey, why don't you have a hospital bed? Dr. should write you a prescription for anything you want at this stage. If the whole bed raises up a little, can you then lower the rail enough to make it wasy to get out of? AH, hell, get him to order you a real hospital bed.

If I was ever tested, I would find out what I have going on with my sleep. I do a lot of snoring...always have. And I sleep very deeply. I used to think it was because all 6 of us kids were so close in age you had to learn to sleep like the dead to sleep at all. Now, when my eyes close, my ears slam shut !! That's why the baby monitor in my room even though she is only across the hall.
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