It's been a long time since I have posted but have thought of you all so much. You were never far from my mind.
A lot has happened since I was here last.
a reminder...mom's husband died the day before Thanksgiving in '07 and soon after, we, my brother and I, moved her from her home to a beautiful independent living facility at the suggestion of her neurologist. SHe hated it...she wanted her house back. She hated that they had to give her medicine..she could take it herself after all...uh, no. She complained so much. (and rightly so)
She lost her driving privileges too ..that just about killed her...all of these major changes in her life came in a few short months.
Before we were forced to move her, she lived across the street from me and because of it she couldn't come back to my house any longer since it caused her such distress.
Well, we toughed it out with her and slowly she came around and fell into the routine of her new life. She can even come to my home again. A real miracle believe me!
She's still not happy, but safe and isn't that what we need to do? Assure their safety? Before my step dad died he kept her hidden away from us and went along with her rantings..which were mostly about me and her suspicions that I was stealing from her...he cut her off from me for over a year..it was heartbreaking and devastating to our family. I suppose he was doing what he thought best but it was a nightmare! Since he died and we got to take over her care she has blossomed ..if that is a word we can use for an Alzheimer's patient. It took us about 9 months to get her on an even keel but we did it. She regained her trust in us..a real blessing. She still suffers the paranoia of the disease but we can somehow handle it ...at the moment. We even took her back to her hometown for a week last September. It is the last time I am sure.
She will never get better and in fact, in spite of the good things that have happend, her numbers have dropped 5 points over the past year. She is slowly and steadily declining. She still knows us and I still take her out shopping 3 to 4 times a week but I know what is ahead ..what is coming. Her language is leaving her more and more each day..her short term memory is slipping faster now and she is now starting to have trouble choosing clothes daily, resulting in her wanting to wear the same thing she wore the previous day since it is easier.
Today I took a day for myself and to tell you the truth I didn't even get out of my comfy robe. Anyway, I thought it was time to check in with you all. I must tell you how comforting it was to see familiar names still here and I read to catch up on what is happening with you all. Read your stories..old and new and cried for and with you.
It's good to be back. I learned so much from you all and I feel I am going to need you more and more in the year to come.
Glad you wrote back girl, you were missed. Sorry to hear about step-dad but I know that you are happy for the chance to spend more time with Mom.
Make sure brother has something to do with Mom's care. It shouldn't be all on your shoulders. While she is in a facility, you may want to cut back on how many times you take her out and about as the illness progresses.
BECAUSE those minor changes causes such conflicts in their mind. Try to keep it consistent and pleasant. But consistency is the magic word
I must tell you how fortunate I am.
My husband and my son are so helpful with my mom. My husband calls her every night at 7:30 to check on her. She waits for his call. He and my son are the ones who do the best at "channeling" her moods. She responds best to their ..um, suggestions as to her behavior.
And my brother, though he lives across the country, he is always ready to board a plane or make a phone call or anything necessary to help. He was here for three weeks over the holidays ..we took her out for New Year's Eve and the smile on her face listening to a latin jazz band was bigger than I think I have ever seen but before we left her living facility that night he took her to the resident party and they danced. It was the sweetest sight. She looked as though it was the 40's and she was dancing with my dad again.
I do the most of the heavy lifting in her care but at the moment there are only a few times that I feel overwhelmed. After our visit with her neurologist last week, I figured I had better start thinking of this year as her last...for her mind at least. I hope I can give her all she needs and wants while she can still enjoy it but I was struck by your comment about slowing down the outings that she enjoys so much. Are you saying that I could be doing her a misservice by doing it..I never thought of the transition of her slowing down to be detrimental. Hmmm..this is why I come here...to learn.
Your report is another reinforcement for those who make the trasntion of ther loved ones to a nursing facility. I think most of the fear and rage felt by older people (I am one of them , soon 70) is that we have a picture in our minds of what nursing homes are like. Those pictures come from old books, old movies, and old information. People strapped to beds, ignored and forgotten, sitting around in dirty diapers.
Well my Mom's experiecne in the NH was just the opposite, caring staff, clean patients, fed, medicated, dressed in matching clothes and combed and even perfumed. Mom's aides notified us when her cologne or deoderant was running out, and always kept her sweet smelling, told her how pretty she looked (yes, a 99 year old can look and feel pretty), and comfortable.
When she could no longer do it, the staff tuened her TV or radio on or off, tucked her in at night, made sure she had water and anything else she needed.
People may have to shop around to find the best facility, but the fear of NHs keeps far too many people toiling at home to care 24/7 for a dementia patient who needs more and better care.
I am glad your Mom is alive and happy, and you too sound so relieved and upbeat. Good for you!
Meg, thank you for your report on what is going on with you Mom. It gives hope to those of use that are still struggling with parents that are not happy with their placement. I do see some of the same signs you talked about. The last two time I took Mom back to her hometown she made no indication that she even wanted to go by the house and there was less distress. What you have said here does give me hope for the future.
I am glad things have settled down for you as well. You should be able to take a day for yourself and just enjoy being you. You have done good!! You have weathered the bad times with your sanity intact and come to a better place in this horrific disease.
As for taking Mom out. As long as she enjoys it and there are no repercussions afterwards continue them. As the disease progresses those outtings will be disruptive to her schedule and therefore her sense of well being but you will know when that time comes. If they are followed by periods of aggitation or stress on your Mom's part then it will be time to slow them down. Until then enjoy what time you have left with your Mom!
Again.... I am so very pleased for you that your Mom has adjusted and you have some time for yourself back in your life
Hello Meg, I was so glad to see you here. I've often wondered how things were going for you and your Mom. Upbeat, is the word that best describes your mood. I'm so very happy for you that your Mom is back in your life. I loved your story about New Years Eve.
Now about outings.......Mom loves to get out as often as we will take her. The only problem we have is that if she has to stay at her place over two days without leaving she gets bored !!!! She will tell me that she hasn't left that place for two weeks. When is someone going to get her out for awhile? LOL We think she is spoiled !!!! And thats OK. She deserves to be spoiled. The only time she seemed to get agitated is when we would keep her over night at our homes. When she would wake up here she didn't remember why she was here or sometimes she would not reconize my home. That knowledge would scare her. "Why don't I know where I am? Why don't I know your home? There must be something wrong with me". So my sisters and I decided no more over night stays. She does much better at home doing her routine there. Other than that she does very well. When outings confuse her, we'll stop. You'll know when taking her out is no longer good for her. Until then, enjoy.
GLad to be back and now that I am I see that I NEEDED to be back.
And, yes, my mom is the same way if she hasn't been out for a few days...the problem, we figured out, is that she doesn't even remember going out from day to day. So I try to remember that when she starts complaining about never getting to go anywhere.
I am probably a bit more stressed than my original posting seems but we do learn to cope don't we. Things aren't always good but they are certainly better than a year and a half ago.
The stress comes from her hiding things and then obsessing about them til they are found...I can get up to 10 calls a day as to where something is that she has hidden..of course she doesn't realize that she has hidden them. Someone, of course, must have stolen them!! Those calls make me crazy...I know we have to forgive ourselves and feel no guilt but Saturday I just snapped at her and said will you PLEASE stop talking about things you don't have and be happy with what you do have. Well, of course, I felt like a dog afterwards. So Sunday we went up to her apartment and searched and searched for what the current thing is that is hidden..Old address books. We have bought her new ones but that isn't what she wants...well,, we never did find those things. She has really outdone herself hiding them this time. But one good thing did come of it. I stripped her closet of more clothes that she doesn't need.
While typing this she called again in a panic..WHERE ARE MY ADDRESS BOOKS.
Oh dear. I just did my best in changing the subject. There are days when she does nothing but search...through drawers, in closets, in cabinets...one day she told me she searched under the bed...that she crawled under the bed and then couldn't get out..I asked her what she did and she said she jsut crawled out the other side...good grief..she's 85!
We thought by moving her to a smaller place with limited stuff she would have less places to hide things. Nope, we lose and the disease wins again.
Oh well...on we go.
You are right Meg, when you think you have resolved a problem there is always a new problem to take it's place. Mom does the "I haven't been out in weeks" lecture as well. She also loses and hides stuff and then searches for it while accusing other of stealing her stuff. We have also been through the address book saga. I guess if you don't remember that's where your brain has to go to make sense out of the chaos in your world. They are doing the best they can and we just do the best we can. I have snapped at mom more than once. I am human you know I'm going to stick with what was said earlier though.... I'd rather throw the guilt under the bus than myself!!! If you are better off than 18 months ago... you are doing well!!
It is good to see you again. WE had hoped that all was as well as could be expected with you and your family. You hope that you can get through a week without a crisis or two but some weeks seem like an eternity, don't they?
I had to chuckle about the address books. My father was forever losing the remotes for the TV. My cousin was my standin for me, bless her heart. I had an agreement with her. I paid her an hourly wage to look after daddy for me. She and dad got along great and she needed the money..and she loved daddy almost as much as I did. Well, she got so frustrated when Dad was in the independant living area because he was forever misplacing the remote for the TV. Lynette was almost tearing her hair out. She would find that darn thing in the strangest (well not for us caregivers) areas. It was every where from the storage room to the towel bin to the drawer where his socks were in the bedroom. But the place that I got the biggest chuckle out of was when she found it in the freezer in the kitchen. Gotta keep those remotes cold you know! She finally fixed Daddy up good. She got some of the Gorilla glue. Glued it to a pad. Glued the pad to a bungee cord and the bungee cord to the remote. The bungee cord was attached to a heavy duty pin that she pinned to the arm of his recliner. That was the last time dad ever lost the remote. The battery died, but we never lost the remote again. Of courst dadddy didn't have to share the remote either-which also made him very happy...
Don't worry it's all part of the game. You'll get through it. And you will remember the parts and laugh. Mom and Dad have been gone a year now and I miss them desparately. So value the memories that you have and just chalk it up the disease. [COLOR]
Well, I swear if I find those address books I may super glue them to her rear end!!
Tomorrow I may take a peek in her freezer. Heaven knows I have looked everywhere else.
I went through it for a while with her phone charging cord....when I finally found that darn thing for about the 5th time we got silver masking tape and taped it to the wall! So far so good..it's still there after almost a month!
I do realize your not in an upbeat mood all of the time meg. We certainly do learn how to cope don't we? Yep, the continuing saga of what is lost today!!!
Last week, Friday morning I think, Mom called me very early. Scared me because it was too early to see her number on the caller ID. It was Mom in a tizzy because she had lost something. Well, hid somethng from herself. That was my hope. It was so sweet and sad and funny all at the same time. "Honey you've got to help me! I can't find my dentures !!! What am I going to do? Just come over and shoot me if you can't find them". I told her not to worry. I certainly wasn't going to shoot her..... She had not left her apartment the night before so they had to be somewhere. She had them in when I left. I sent my sister over and it took awhile but she found them in Moms blouse pocket wrapped in a tissue. Lord, what would we have done if she would have thrown them in the comode???? This is a new thing now. Her gums are sore and she takes them out at very odd times. She is on another swish and swallow medication for the sores. She lost the bottom ones again tonight. She called and I talked her through the places to look. She found them in her robe pocket. The first thing she said was that someone had stolen her teeth !!!!!! Now Mom, think about it. Why would someone steal your teeth?? " I don't know but they're gone. Maybe someone took them that needed teeth. Stranger things have happened". Her purse is always gone now but its a little easier to find than the dentures.
She does make me smile everyday. Well, almost everyday. LOL Just kidding. Her voice makes me smile.
OMG someone stole her teeth?!
Thanks for the laugh this morning.. I needed it. You have all shown me the humor in it again, somehow...
I have been so stressed with her being so stressed...but I am heading over there this morning to take her to the doctor and while there I will take a peek into the freezer and behind desk drawers..that was my brother's suggestion.
Do your loved ones constantly search like my mom does....
and she wonders why she sleeps at night. Hah..it's becasue she spends her days on a scavenger hunt in her own apartment!
Its better that they call a loved one to say 'hey I can't find . . ."
My mother would purposedly hide things and not remember where. It could be weeks or months before it shows up even one time it was years. But
while I'll take getting calls and admitting they put something somewhere and can't find it, its better than what my mother did.
She started to call those 800 physic hotlines and started getting calls back telling her they had messages for her and for her to dial a 900 number -- this caused horrendouse phone bills. We had to block the 900 # and God blessed us by allowing us to find the missing items.
Take the calls, you never know who they may suck into their drama and that person may help themselves to other things