Hello Everyone,

It has been a while since I have posted on this wonderful site. The last time I posted was back in December, January, and February when my then 83 year-old father fell and fractured his pelvis. He and my mom, who is now 73, ended up very reluctantly going to a small assisted living center in the small town where I they and I live. They only stayed a month in the ALC and when were insistent on going back to their house. My father weighed 119 when he went to the Assisted Living Center and a month later, he weighed 132 and looked wonderful. Within 6 weeks of being back home, he was back down to 119 and is still there!

But, on to the newest dilemmas going on now...my parents have made it clear that they want to age at home with in-home care and I naturally want to give this to them. I have been caring for them myself, with my husband taking breakfast to them most mornings, and I take a late lunch to them every day. My mother stays very tired from dealing with my father, and then it carries over to me being tired from trying to pick up all of the slack. My mom is too tired to clean the house or cook for him, however her intentions are good.

About a year ago, I noticed small changes in my father's everyday memory. Gradually, these changes have become more noticeable. About 5 months ago, things really started changing. He went through periods of knowing that he was confused and would call me over to the house and talk to me about it. He had trouble explaining what wasn't making sense to him, but he at least knew that he wasn't making sense. Then, he began to tell me about what he described as, "out of body experiences", in which he would drift off to sleep (he has narcolepsy and cataplexy) and be somewhere one minute and somewhere else the next....felt like he was flying and it was scary for him. He hasn't mentioned this stuff in about 3 months.

Now, he is generally good during the day with his memory. He cries a lot and is really mad that he cannot physically do the things he once used to do such as mow the lawn, change light bulbs, etc. Actually, he is REALLY ANGRY about his limitations. He is on a new antidepressant that begins with an "S" and it is different than others in that it increases the norepinephrine levels rather than Serotonin (I think that is right). At around 5:00 p.m., he begins to ask my mother what house they are going to sleep in that night. For some reason, he thinks that there are two houses that they stay at, but both of them have the exact same furniture in them. What I see that is different now is that he doesn't know he is confused, but he is CONVINCED that he is right about there being 2 houses, etc. I used to could ask him to just trust me when I told him that he only lived in one house and he would calm down...not so anymore. He has also asked my mom on several occasions if anyone had slept in one of the spare bedrooms at night. In fact, the other morning he asked my mom who the woman was that he visited with the night before that slept on the trundle bed. He said he never saw her face, yet when I asked him about it he could describe her hair a little but told me he didn't talk to her because she was sleeping.

Tonight was one of the worst episodes, but it started out as a very glorious day and I am thankful for that in itself. I have finally collaborated with my mom and talked her into hiring someone to come in and cook and clean for them 3 days a week. In addition, Hospice has been on the scene for 3 weeks now. I am very pleased and they are "on the ball". They shower my father 3 days a week, and he loves the nurse that comes to visit him. My mom gave me holy heck over hiring someone, but it was just time and of course, I have lots of guilt.

Connie (their new wonderful cook, helper,etc), showed up today to clean and she made beans and cornbread. My mom and I went to the grocery store to get her out of the house. When we arrived back home, my father sang the praises of Connie's cooking and the fact that she "made him" eat the beans and wouldn't settle for anything less. This made me very happy because my father seemed happy and so did my mom. So...I get in my car to head home and am just beaming from head to toe thinking " Finally, everything may be okay and I can quit worrying and fretting." I called my sis and told her how wonderful things were today and I thanked God for this day, even if there are never any others with my parents that are this good.

But...I feel it was too good to be true because around 6:30 p.m., my mom called asking me to come over because dad was agitated. My husband and I went over and he met me at the door and told me that he WAS going to stay at the other place and not this one and that mother wouldn't go with him. I told him "Okay, I bet if you head that way, she will come later." Of course, he didn't go outside where he pointed, because there wasn't any place to go so he headed down the hall (however to him, it was "up the hall" and "up to the bedroom." I followed him and he went into their bedroom and said, "No...this isn't the place I want to stay at, but I can't get your mother to see this." I said, "Well, maybe mom misunderstood you daddy." He then said, "Well, I really don't care where we sleep, but she doesn't believe that there is another place that we stay at." I said, "Daddy, I will talk to her but if it doesn't matter to you, would you mind staying in this bedroom because it would be more convenient for Jerry (my husband) and I because it is closer to where we live." He said, "No problem, I don't mind at all." He then asked me if anyone was sleeping upstairs, and I told him no, that they were the only ones in the house and that he rents the house from us (which he does) and he only rent to them. My husband carried on a conversation with my dad in the bedroom, and I went to speak to my mom who was in tears by now. I asked my mom to please just agree with him from now on. I told her that it seemed that the whole reason for his agitated state was that she wouldn't believe him. She said, "You mean to tell me that I am supposed to go alone with something that isn't true"? I told her yes, that if she would just agree with him, he would calm down and maybe she could change the subject. I reassured mom that dad loved her, because he yells at her and is very ugly to her. I also told her that if he ever tries to hit her, to immediately call me....I may be wrong, but I honestly believe that the physical part is next because he is so adamant that he is right about things. I sure hope it doesn't come to that though. When he walked into the living room, my mom said, "Honey, I was just confused about what you meant and I am sorry." He then said in a triumphant, child-like voice, "I WON"! He even said it again.....We stayed a bit longer and watched t.v. with them and he seemed calmer but it is playing havoc on the rest of our lives. I am over there nearly every day dealing with another issue.

Can anyone tell me if this sounds like Sundowner's? I haven't had him evaluated by a doctor for this yet, because I do not know whether to take him to his M.D. or what???? Is this dementia? Medication? I have big time issues with death...my grandmother died in front of me when I was 8....so hospice has suggested that I go to a grief counselor. I have been one time, and she feels that I have "anticipatory grief" and have probably been grieving this way for many years now. I dont want to be this way because I cannot eat, sleep, and I am nervous all of the time. I am drained and do not even care how I look anymore and I am a fitness instructor for Pete's sake! All I want is for my mom and dad to be content the best they can, and I cannot seem to make that happen for them.

Sorry this was so long, but I have so much more to say.............HELP, HELP, HELP!

Love to all

Laurie
47 year-old daughter of two very precious parents

Its a great thing that you are doing caring for your loved ones at home. The natural loss of memory if dementia is coming on, then could i suggest that you start to collect the precise memories that your loved one has had, its the ong term memory that suffers and if you find that your parents are suffering late at night, then having a 'memory box' to hand would be very much a soothing and practical thing to use to talk them 'down'. It'll probably be good fun for you too.

Our website is (link removed by moderator) and we have anew news section in the coming months they'll be more helpful things that you might want to use. I'll look out on this post too. All the best

Mal

This message has been edited. Last edited by: Moms_Buddy,

First, may I make one suggestion? BREATHE!!! Remembering to breathe through a long haul is essential!

The best course of action would be for him to be evaluated by a geriatric neurologist to test his cognitive abilities, etc. Nightime confusion and agitation is frequently termed "sundowning" and is one of the collection of symptoms commonly termed "dementia," which can be caused by many diseases & conditions. Calling & discussing your concerns privately with his PCP and requesting an evaluation might be a good place to start...

Caring for parents in their home, particularly when one has cognitive difficulties, is difficult. Bobcat does a great job of this with her mom, but two parents makes it more difficult.

Caring for aging parents is arguably the most difficult task we undertake as humans. It brings forth many emotional issues and is taxing in ways we could not have anticipated!

It's like this: we can walk along with them to a certain point, but there comes a place where their paths diverge from ours and we have to let go. Everyone has their limit of how far they can walk down that path...

Do the best you can to balance your parents wishes with practical and medical consideration. I think we'd ALL like to grow old and die in our own homes, in our own beds; unfortunately, we don't all get that lucky! If your parents need more assistance than you can provide, don't hesitate to seek other solutions for their care!

Remember that you are ONE WOMAN - you can do only so much and your FIRST duty to ALL concerned is to take care of yourself! Without your balance and health, the whole thing goes down the tubes! While "grief counseling" might be beneficial, I think that a good adult caregivers support group might be helpful to you! It helps to discuss these issues with folks who not only "talk the talk" but they also "walk the walk."

Many blessings to you for all that you do for your parents!