enna Posted June 12, 2013 Report Share Posted June 12, 2013 Well, first of all, Kay, I'm glad you had a good time with your Mom. It is not unusual that your Mom does not remember people or recent events. I would be very concerned about the way you were treated at the door when you arrived to pick your Mom up. Never is it all right for anyone to be rude to anyone nor should you ever be 'chewed out' for any reason. Very strange to me that the 'rules' changed and all who have residents there were not notified through letter or phone call! I would follow up on this one. I'm glad that you talked to your siblings about this. I would have someone there every day at different hours just to see for myself what is going on and why 'rules' have changed without notification! If there was a 'quarantine' how come your Mom was allowed to leave? You are not being 'paranoid' about your concerns. She is your Mom and you have every right to know exactly what is going on. Please let us know what you find out, Kay. I am so sorry that you have this on your plate. Love you. Anne Link to comment Share on other sites More sharing options...
mfh Posted June 12, 2013 Report Share Posted June 12, 2013 Kay, I totally agree with Anne, Something is not right. I do not know of any nursing home that demands you call ahead. My dad was in a nursing home and mom was in and out of them for rehab after falls. At ours here in town, you just come in and visit or take someone out. Patients do have to sign out but not call ahead. I also would be concerned about the quarantine...did that happen just since you took her out to dinner or wherever you went? I agree, having all of you pop in and out unexpected and also take her out unexpectedly. Then keep a record of all that and sit down with the head person. I am sorry this has happened. You do NOT need this. It is difficult enough. Mary Link to comment Share on other sites More sharing options...
kayc Posted June 12, 2013 Author Report Share Posted June 12, 2013 She posted the "quarantine" notice while we were out. She said they want advance notice so "they can get her ready". I can get her ready. My mom can get herself ready. If I arrive and she has five coats on, I'll remove four. If she has her robe and slippers on, I'll help her pick out something to wear. Why do we suddenly need them to help her get ready? Link to comment Share on other sites More sharing options...
kayc Posted June 12, 2013 Author Report Share Posted June 12, 2013 It was very hard on me that she forgot who George was. George truly loved her, more than anyone did excepting my dad who has been gone for 31 years now. He called her mom, he had a way with her, he'd take her in his arms and dance with her (something she would never have allowed anyone else to do), he'd take her for rides, "the scenic route", he always called it. He made her smile and was better with handling her than any of us kids were. She loved George. It hurts me worse that she forgot him than her not knowing who I am. Even showing her a picture of him and talking about him didn't help. It just wasn't there. I know this is how Dementia is, but it also hurts, and I don't think any education can prepare you for what you feel. Link to comment Share on other sites More sharing options...
mfh Posted June 12, 2013 Report Share Posted June 12, 2013 Kay, I do know how difficult it is when the person we love forgets someone we love. It is like they forgot not only that person but even ourselves because that person was part of us and was so important to us. I am sorry this happened. You do know that the next time you see her she may very well remember. I would take some photos along and something of George she might remember. It is unpredictable as you know but because it is, she may remember him next time. When you keep a log of all this starting with the history of never having to call ahead and never having a quarantine sign go up while you are gone...fishy....and date everything and keep it in a log where pages can not be inserted and if one is torn out, it is obvious; be on the look out for anything and everything. Is there a staff person there that you trust? Mary Link to comment Share on other sites More sharing options...
MartyT Posted June 12, 2013 Report Share Posted June 12, 2013 Kay, I too would be concerned about what is going on at your mother's facility. If a quarantine was imposed, there could be some sort of infection going on among the residents and / or the staff, and your mother's health could be in jeopardy. It seems to me that you need some answers here, and you may need to go past the person who was rude to you, up the chain of command to the charge nurse, then the director of nursing or the nursing home administrator. (If you were given a manual for your mom's facility when she moved in, that should give you an idea of how her particular nursing home is run and how its administration is structured. Otherwise, someone at the front desk should also be able to answer your questions about the chain of command and steer you in the right direction.) Link to comment Share on other sites More sharing options...
kayc Posted June 12, 2013 Author Report Share Posted June 12, 2013 I spoke with someone in the office (separate building) and he told me Pam is a caregiver, in other words, not someone with great authority. He assured me that there is no such policy and I am free to come and go as I please and can visit her without prior announcement. He also gave me the phone number to the head person and I left her a voicemail and asked her to call me back (I was interrupted in the middle of my leaving her a message so couldn't get into it too in depth). The quarantine they said they think is food related (Norovirus?) involving Diarrhea...I hope my mom doesn't get it because she had it once and it landed her in the hospital. Link to comment Share on other sites More sharing options...
kayc Posted June 12, 2013 Author Report Share Posted June 12, 2013 Mary, thanks for pointing that out, it's true, she may remember him next time. And I guess I have to steel myself for the eventual inevitability... Thank you Marty and Mary both for your input, I needed to know if I was out of line or if this is common...I haven't heard of it before but I am learning to trust those little red flags that go off inside myself. I appreciate your feedback. Link to comment Share on other sites More sharing options...
mfh Posted June 12, 2013 Report Share Posted June 12, 2013 I like Marty's suggestions to talk to these folks now. But I also would keep the log of visits for reference if anything else happens. Sounds like perhaps an exhausted caregiver may have lost it at your expense.... Link to comment Share on other sites More sharing options...
kayc Posted June 12, 2013 Author Report Share Posted June 12, 2013 Mary, I did call, I am waiting for the Exec, Dir.' call back. If she doesn't call me back today, I will call her again. The receptionist did say that she was probably stressed over the quarantine. Still, that's not an excuse. Smiles are free, there's ways to deal with people, and ways not to. I can excuse her rudeness but am not impressed with her "controlling" manner. I know that's the foot in the door to abuse and I'm not having it. Link to comment Share on other sites More sharing options...
kayc Posted June 13, 2013 Author Report Share Posted June 13, 2013 Okay, I got a call back from the Exec. Dir. today and she is going to address the policy with the caregiver. I explained to her that I can't always give advance notice, particularly in the six months of winter as I have to keep abreast of the roads/weather before deciding to come. I am perfectly willing and capable to help her dress for outings and do not expect them to ready her. I have her there during medication times. Here's hoping with the air cleared and everything understood, all will go smoother. No update on the quarantine as yet. Link to comment Share on other sites More sharing options...
MartyT Posted June 13, 2013 Report Share Posted June 13, 2013 Good for you, Kay. I'd hire you as my advocate any day Link to comment Share on other sites More sharing options...
mfh Posted June 13, 2013 Report Share Posted June 13, 2013 Sounds like in-service training is lacking there. At least s/he said s/he would talk to the caregiver. I would still keep some records...maybe a notebook in your car to make an entry after a visit and date it. I would also wander about a bit when there...eyeball the place other than just going to your mom's room. Can you eat with the residents? I worked residential treatment for 8 years and believe me meal time tells it all. Mary Link to comment Share on other sites More sharing options...
kayc Posted June 13, 2013 Author Report Share Posted June 13, 2013 We can eat with them but have to order it the day beforehand, so again, advance notice. Dementia Care Centers are much smaller than Assisted Living Centers and I think they plan their meals tighter as such. I prefer to take her out while she is still able to because I think it helps her mindset, makes her feel a little less imprisoned plus affords us more privacy. She did say the caregiver had always worked nights so isn't used to interaction with family members. Link to comment Share on other sites More sharing options...
mfh Posted June 13, 2013 Report Share Posted June 13, 2013 I certainly understand getting your mom out while she can...and that it IS good for her and for you. And the privacy is so valuable. You are so on top of this....you can be my advocate anytime, also. Link to comment Share on other sites More sharing options...
kayc Posted June 24, 2013 Author Report Share Posted June 24, 2013 This weekend I listened to my mom on the phone (she doesn't understand how to call people anymore, and sometimes doesn't answer when we try to call her). She said she used to be married to Mick (my dad) but she doesn't know what happened to him, that maybe she divorced him or something. I gently told her he passed away over 31 years ago, that they always loved each other. She rambled on, going in loops, for another half hour, then she said she used to be married to Mick for 8 weeks and she wished she could have had longer with him (they were married 29 years). It's weird how her mind works now, with all the broken pieces and she tries to fill in the missing places and make sense of it. She knows it's messed up. I usually try to reassure her that it's okay, that it'll all be made right someday and it's not her fault. Link to comment Share on other sites More sharing options...
kayc Posted June 26, 2013 Author Report Share Posted June 26, 2013 I went to see Mom last night and the caregivers took me aside and explained why they'd felt they needed advance notice with her and apologized for sounding so abrupt and cryptic in their manner. They do, indeed, have their hands full with her. I assured them that we are well aware of her stubbornness, which we've all assured our husbands we do NOT take after her in! It seems she puts up quite a resistance against their "help" even though she needs it. Last night I experienced some of that myself and I had to get very strong and very tough with her and INSIST that I help her, whether she wanted it or not! I draw the line at safety concerns. She can take her time at dressing, etc., and I'll be patient, but if she steps away from her walker, I WILL assist her, like it or not! We had an okay time out last night, I know it does her good to get away. I wish she didn't have the dreaded Paranoia, it makes her life so miserable as she thinks everyone is against her and imagines the worst. She still doesn't remember who George is even with pictures and me telling her about him. I told her that just gives me the opportunity to tell her about him all over again! She is very confused, doesn't understand familial relationships (whether someone is a husband or a son, daughter or sister). We tell her what she wants to know, knowing she'll forget it right away. She thinks I'm Julie, which I've accepted. I found out the new owners of her house are restoring it, and I am so excited to hear that! They've put a new roof on, are painting it, would have had to take care of the DEQ matter and plumbing issues in order to live there. I imagine they'll have torn up the carpet and restored the hardwood floors too. Maybe they'll do all of the things my parents intended to do someday to it and didn't get around to. It's solidly built so I know they'll have a nice place when they're done. Link to comment Share on other sites More sharing options...
MartyT Posted June 26, 2013 Report Share Posted June 26, 2013 Kay, I hereby nominate you for Daughter of the Year award Link to comment Share on other sites More sharing options...
mfh Posted June 26, 2013 Report Share Posted June 26, 2013 I second the nomination!!! For sure!!! You have the patience of Job! And so much love. Mary Link to comment Share on other sites More sharing options...
enna Posted June 26, 2013 Report Share Posted June 26, 2013 Dear Kay, I have been quietly waiting for my turn to present you with a bouquet of roses from all of us here on this forum. You are a true inspiration to us. Yes, those with Alzheimer's disease do forget who people are, they forget where they are, they think they are just fine, they think they can do for themselves and just don't understand why everyone is 'fussing' over them. You are a very special person in my eyes. It has been said that during the later stages of ALZs we family members, caregivers, and others learn to enter their world and therefore we are better able to cope. I truly am in awe at your positive and dedicated outlook about your mom's illnesses. So, from our entire tribe I would like to present you with this bouquet of pink roses - a symbol of our closeness and love we have for you. Link to comment Share on other sites More sharing options...
kayc Posted June 27, 2013 Author Report Share Posted June 27, 2013 Wow, a trophy AND a beautiful bouquet of roses, I won't know how to act! You guys are so sweet. Actually, it's easy to have patience when someone else is doing all of the hard work...that is, the caregivers. You guys didn't have that option, you did it all yourselves. Believe me, I've thought about it, but I feel it would be too big for me to take on by myself and being as I need to work and don't have a "relief person", I don't think it feasible. I know my brother considered it too and I'm glad he didn't, I think it would be too hard on his family (he still has three kids at home). Plus when they reach the point that they could burn the house down... I swear that Dementia is one of the hardest things. But hard as it is, it's still the ever present Paranoia that is the hardest to deal with. And she's had that for years, I remember her having it even when I was a little girl...perhaps it's been there all her life, I suspect it has. It's the Paranoia that makes her so unhappy. I had a dear friend that died from Alzheimer's and she wasn't unhappy and didn't think negative, she still had a sweet spirit about her. What I remember was hard with her was when she first started noticing something was wrong...it scared her. After she got far gone she didn't seem to have a care in the world. I hope for that with my mom, and little by little I think she's getting there. Her missing parts of her brain seems to be a blessing in a way, she seems to be less frantic. Oh this poor woman, she could have benefited from medical care/therapy all of her life and never got it! At last, now, she is being taken care of and it's such a relief to our minds. Link to comment Share on other sites More sharing options...
mfh Posted June 28, 2013 Report Share Posted June 28, 2013 Kay, I do know how hard it is to deal with dementia. I learned to enter Bill's world and if he thought he was standing in a foot of water I was also and if he thoguht he saw something we got rid of it together. My mom used to see a man rummaging through her dresser looking for her jewelry so she would hide the jewelry...and we had to find it when she could not find her watch and a certain necklace. Finally my brother bought a few Timex watches just like hers and was able to "retrieve her watch" and please her. We never did find some of those watches when we cleaned her room out. My heart goes out to you and to her as you walk through this. YOU are a GREAT daughter. Giving her what she was not able to give you. Mary Link to comment Share on other sites More sharing options...
kayc Posted August 6, 2013 Author Report Share Posted August 6, 2013 It's getting harder to take my mom out. I think she still enjoys it but I'm not sure to what degree. Last night she all but begged me not to take her back "to that place", it's hard. She says and does inappropriate things, it's getting more pronounced. At our Family Reunion "dessert night" she didn't know anybody but had a good time. Last night she ordered her meal and then didn't want it when it came. I suppose it's common. I just know it's the saddest thing in the world to watch someone go, bit by bit. I showed her a picture of her house, now that it's restored, thinking she'd be pleased (I only showed her the outside, I knew the inside would be too much), but she said it was overwhelming and pushed it away. I thought she'd be relieved that they didn't tear it down, that her and my dad's work on it would be preserved. Oh well, one thing I've learned is their responses can change from one minute to the next, and they really can't grasp things. Link to comment Share on other sites More sharing options...
enna Posted August 6, 2013 Report Share Posted August 6, 2013 My dear, dear Kay. I am hearing you when you talk about how hard it is getting to take your mom out. That is part of the Alzheimer's disease. There is a book that I heard about when caring for my Jim called, Coach Broyle's Playbook which really helped me understand this disease. I mention it to you because you might find it enlightening. I so understand about food - when I was still going out with Jim he would do the same thing - order something and not know what it was so he would not eat it. I then knew that it was time to stay home and fix his meals. I am so sorry that you are going through this with your mom. I am walking with you during this time and expect that you will keep in touch with me if you have any questions. Love you. anne Link to comment Share on other sites More sharing options...
kayc Posted August 7, 2013 Author Report Share Posted August 7, 2013 Thank you, Anne. Many reviewers complained about the grey type, said it was too light. With my eyes, I knew I wouldn't be able to read it, but I was able to download the eBook. I will read it a bit at a time, as I'm really not able to read for long with my eyes and focus. I look forward to getting in to it! Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now