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Problems with elderly parents who both have Alzheimer's

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Posted 1/14/2010 4:28 AM (GMT 0)
Both of my parents have Alzheimer's, in different ways. My mom is much more out of it and rarely knows what is going on around her, and she gets sad a lot. She has diabetes, lost a lot of weight, and is under control, but she exhibits every time I see her very odd unacceptable behavior.

When she sits down, she "adjusts" herself, i.e. pulls on her Depends, twists her skirt and pulls it up and down. To watch her makes me feel very much on edge....so I can only imagine what is going on in her head. She removes her dentures at will, at mealtimes, and cleans them. It is so gross and embarrassing that I can't even look at her doing it. Also, she takes her eyeglasses off all day, cleans them constantly, insisting they are dirty. I know she can't see well without them, but here odd behavior continues.

My dad also has dementia as well as Parkinson's although he denies that anything is wrong with him. Just last week my parents' table in the dining room was about 6 inches away from where it is supposed to be and since it is harder for him to push his walker, he became badly agitated and upset beyond words. Then out of nowhere my mom decided she needs to eat and won't go to sleep until she does. She had already had her dinner and I guess forgot. She became unreasonable, while my dad is screaming at her that she must be in bed by 9:30pm. I told my dad to calm down and not to worry exactly what time my mom goes to bed, but he insisted that my mom agree to going too bed at 10PM. Everything has to be in a certain place, take place by a specific time, and he is controlling this way.

These things happen on a weekend, when no administrators are on-site yet they are reachable by my parents' aide, who couldn't even explain to me on the phone what was going on, and he did absolutely nothing to intervene, didn't find a nurse or anything. He is the one to know what to do in this type of situation, NOT me. I want my life back as my dad started calling me every other second until the assistant administrator told him he is not allowed to call me because it makes me upset and sick (which it does).

So now I call them less on the phone and see them less in person because I can't stand it anymore. I have my own fibro and lower back pain to deal with and need to have a life of my own.

What would you do if this happened to your parent or parents...that live in an assisted living??My parents refuse to go to a nursing home so they will stay where they are until they are in hopelessly bad shape

Any ideas? encouragement please?
Posted 1/14/2010 9:20 AM (GMT 0)
It'the disease,not them.They can't help what they are doing.Does the ALF not have a dementia wing?
Posted 1/14/2010 12:34 PM (GMT 0)
Hello,
Yes it's the disorder not you and maybe you need to step back and let the staff take over more....as much as you love them you need to love your self aswell. Sometimes that means taking care of ones self and doing what we need to do. If you don't take care of yourself you aren't going to be any good for anyone. Be kind to yourself and they will be fine they have the staff to take care of them and if they have a situation they know how to reach you...maybe you need a couple days off so to speak. Maybe a hot bubble bath!!! just a thought....
Posted 1/14/2010 1:50 PM (GMT 0)
It's upsetting to see the ones we love go downhill mentally. What you're mother is doing can't be helped. Unfortunately that is all part of Alzheimers. The appropriate rules and regulation of society don't apply to them anymore because that part of them is lost.

I agree that you need to step back and let the staff take care of your mom and dad now. It is what they are paid for. I don't mean to step away from them permanently or anything like that. It's more a delegation of duties. As for the phone calls, tell the aides that you can only be reached at certain times of a day and if your parents become agitated after that then they have to deal with it.

I was the primary caregiver to my grandmother for 4 years before I put her in an assisted living. As the year progressed she became more and more depressed and agitated. I was getting phone calls at all hours because she would have them call me. Finally I had to tell them that I just can't handle these phone calls. And that I would talk my gma down but I just can't both physically and mentally handle the talk downs at all hours. My health was being majorly affected and I had to think of my kids and husband. I know we love them and we want to do what is right but sometimes we have to take a step back as hard as it is. Take your concerns to the manager of the facility and see if you and them can make a compromise.
Posted 1/14/2010 9:45 PM (GMT 0)
Thanks everyone for your helpful replies. I did make a point a couple of months ago that I will not have to pick up the phone when my parents call me. I had this meeting with the administrators and supposedly everything was in order. My dad had been calling me daily, harrassing me to call my mom everyday or she could die. I realize he doesn't have the mental capacity to think things out reasonably anymore.

The co-administrator of the AL has taken the time to speak to my dad about all the procedures and that he is NOT to call me when something goes wrong, particularly during weekends when none of the executive staff are present. However I have been told that there is a way to reach them if/when the need arises. It is their responsibility to figure out a real plan for weekends, and the aide sometimes can't make a simple "fix" when he can do so.

I went to a caregivers support group just now and the "leader" announced that her group is really meant for spouses, and not children of parents with Alzheimer's! There was one other person whose parents have Alzheimer's there as well. When I asked her if I could continue to go to her support group meetings and at first she clearly answered me with a "no." So then I started to cry since I need support so badly and she said that I could continue to come! I am so tired of feeling like a fish out of water and that no one cares at all about my troubled life.

There is another group strictly for "Alzheimer's" and the leader told me I would not belong there either because it's the same thing....it is mostly for spouses and not children of those with dementia.

My therapist keeps encouraging me to go to these meetings and then I come home and the first thing I do is cry.....how many people are there to give me support??

Then I have to send requested info to my eldercare atty. and I never saved any proof. Why didn't the attorney to keep track of these things in the first place?? My fibrofog is so bad and I just get so anxious with all the paperwork and I already take anti anxiety meds and antidepressants. I am truly beginning to feel like I've lost my mind and really, honestly, I would rather sleep most of the day and hide in the house.

How can I find the right person or place to let me vent and f'n listen to me and my feelings. I am so emotional, and I am trying so hard to get my life back and feel normal. I have my papers scattered throughout my house, most of which regard my parents. I need help, I tried my previous therapist, but she mostly tells me I need to do guided meditation and things like that to calm me down.

On top of all this my left retina detached and I had surgery to re-attach it. Now cataract(s) are getting worse and I fell totally blind in the dark. I know I can't drive before or after sunset because with the glare I can see nothing, and this is so depressing also.

Who will be able to help me get my life back on track and listen to me vent and cry. I don't know what else to do. I am backing off regarding my parents' care and letting the AL do their jobs properly.

And I can't help myself when I get so emotional...I just can't.
Posted 1/14/2010 10:29 PM (GMT 0)
She was wrong to tell you NO!!!
Posted 1/14/2010 10:45 PM (GMT 0)
I think snowy is right here and you hve now found us to vent to it is hard looking after your parents seeing them change and being sick self i did both of mine til they passed. i really miss them   .my daughter has to do 75 80 percent of all around here due to recent hospitilization and my being deaf..i feel like a burden..i know this is hard but i also know we will listen to u and i know too that when your parents are gone you will miss them...set up a meeting with al doc and set guidlines for what you want n need n for what yr parents need..stay with us
Posted 1/15/2010 1:12 AM (GMT 0)
SNOWY, I AGREE WITH YOU BUT I HAVE NO DESIRE TO EVER RETURN TO THAT GROUP BECAUSE I WOULD NEVER FEEL ACCEPTED OR BE COMFORTABLE THERE. THERE IS ANOTHER ALZ. SPT. GROUP RIGHT NEAR ME AND I WILL CALL BEFORE I GO TO ANY SUPPORT GROUP MEETING.

One day when the leader experiences my very same problems, I hope there is no one there to be by her side. Somehow, I seem to be there for everyone I could possibly help, so what is her problem?..................................................................................................................................................Edit PLZ refrain from use of all caps here in responce to Snowy or other members as it gives impression you are yelling...........thanks...lyn

Post Edited By Moderator (Howlyncat) : 1/22/2010 9:44:13 PM (GMT-7)

Posted 1/15/2010 1:55 AM (GMT 0)
There is a dementia floor at the AL, but the management still don't think my mom belongs there. I guess with the assistance of my parents' aide they manage okay, but once her dementia gets even worse and she becomes harder to deal with they will both have to move downstairs to that unit. They can still partake in the entertainment at night and activities (but I know they won't want any of that). Then to move them downstairs will be a huge problem with them and I think they may have to have separate apartments.

Meanwhile the Medicaid planning is still going on and I have to provide the eldercare attorney with documentation from their banks as to withdrawals and transfers. I don't think I have any of the deposit or withdrawal slips but I hoe the bank can provide whatever is necessary. Then I have 2 other banks to deal with. It just isn't fair that I have to do all this stuff when the attorney has already earned about $32,000 and it might even cost more.
Posted 1/26/2010 5:26 PM (GMT 0)
Hi am just kinda lost here why do you have to do this stuff IF there are attorneys being paid to do so..perhaps it is different here in Ontario i dont know but i do know i either would be looking after it all ..which i did..or hving an attorney not both....jmho...lyn
Posted 8/28/2010 3:48 PM (GMT 0)
Hi Janet - Firstly id like to say your not alone in this situation, and there are people/organisations who can assit you with the proper care that your parents need. I know the stress and emotins you are going through as I am going through it myself, I am 34 and have looked after my nan for 4 years, solid! I gave up my job and teaching career to look after her because she brought me up, my nan is 86 and over the years had deteriated to the point of not being able to do nothing for her self, and also has short memroy loss, emphasimia in final stages, and recently got to the point of being agressive and wanting her own way like a child which makes my life impossible, due to being called every 20 mins 18 hours a day. She also phones the my sister about 300 times a day and also smokes near her oxgen"when left alone". Oh and im not her carer and dont get paid for looking after her, as i do it becuase out of love

What you can do if you want to put your parents in a nursing home:
If your living in the UK, then what u need to do is to go and see a Social worker and your GP and arrange for them to come out and assess your parent/parents, the social worker will air your concerns and then ask your GP for a sittuation diagnosis on your parents and if they can manage by themselves, and if u explain to your doctor about how it is affecting your own life and making you depressed which it does, then he will probaly urge for your parent to be put into a home. The social worker cannot directly put your parents into a "home if they are in there right minds", but you can also ask for social worker to have your parents evaluated via Psychiatric doctor to which a report will be submitted from them to the social worker with there verdict. I hope this helps - spence x

Post Edited By Moderator (Red_34) : 8/29/2010 6:37:35 AM (GMT-6)

Posted 9/5/2010 11:51 PM (GMT 0)
You can talk to us. You should still have a relationship with your parents. It is the disease that is making them this way. To deny your own parents phone calls, yes it is stressing and hard, but you shouldnt cut them out completely. Fibromyalgia is a hard disease to deal with--I know. I am taking care of my grandmother with dementia and I have fibromyalgia and I also am in chemotherapy. I do this 24/7 7 days a week. I only get breaks to go to my doctor appointments and 3 to 4 hours a week by my mother who relieves me. Why do I do it even though it is too much? Because I used to work in a nursing home--I know about behind scenes. I know they will leave patients for a few hours soiled in their own feces. I won't let my grandmother go through that if I can prevent it. You can get support by talking here, going to a councelor at mental health. In fact, if you ask DHS for the elderly caretaker manager she can send you information of support groups that are for families--not just spouses. Social workers can not move a person into a home unless they are a danger to others or themselves. If it is really that hard for you, you can make your parents a ward of the state. Therefore, you will never have to do anything at all for them. No banking, no calling, no visits. I felt so bad for those patients when I worked in the nursing home that I gave up my only 2 days off and went in as a volunteer and strictly visited the patients that had no family coming to see them. That way, even though they aren't there in the head, they know they aren't alone and someone cares. I remember a day I was called at home saying to come early because one of those patients that had no family coming to visit wasnt going to last a few more hours. Right before she passed away she told me "thank you. I love you.". Maybe an act of God, for the few seconds of clarity moments before her death, one will never know but I at least know I was appreciated. I at least made someones day.

Maybe you could come up with a plan and hire a finacial overseer who handles all the finances. If you have not done so, you need to be named the legal guardian. You can set up a routine with them like your parents are allowed to call you X amount of times in X amount of length. You could visit them X amoutn of times a week too. Just know, even in the disease, they are there somewhere in their mind. They may not remember you all the times, but they know you love them and care about them even on those days. Sure, they will say things sounding off the wall, and insane, but oh well-- its a dellusion. Like last night, my grandmother had a dillision-- told me to get the guys out of the freezer! I asked her what guys to get "I dont know." so I said "Wow the freezer is bigger than I thought" and she started laughing and told me "I guess so it is." So I had her look with me in the freezer and I showed her the food we had in it. They will sound weird at times, but just go with it, go with the flow.

REmember laughter is the best medicine.
Just regular Mental health councelors can help you vent off about your parents--just ask my councelor- I vent about grandma there.
And you have us, we are like an family, always here for one another. (just ask Red, lol)
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