Saturday, June 5, 2010

I Just Don't Know What to Do

Sadness and confusion. Constant feelings I carry with me like an oppressive sack that hangs around everywhere, getting fat like Santa’s bag of presents. I can’t read a book or watch a movie. I struggle to make plans with friends. There is no space in my head for the frivolous and the enjoyable. When my mother does poorly, I do poorly, and this week was a beggar man’s one.

Mom was here on Tuesday and Wednesday. I visited her on Thursday and I took her to a social daycare program yesterday, one she attended for six months prior to moving into the rest home. She made lots of friends there and everyone was happy to see her. She remembered almost no one.

Mom has been happy on the days she is with Dan and me, but extremely confused when it is time to leave. She thinks she is going home and I still can’t figure out where that place is in her mind. Could it be the North End where she lived most of her life? Or in Saugus where she lived for the past twelve years? She can’t verbalize it. I don’t think she can even see it clearly. In any case, her idea of where she is going is separate from the reality.

On Tuesday when Dan pulled up to the rest home he had the worst “drop off” yet.

“Why are you taking me here? I have to go home! I have laundry to do and I have to feed the cat…she’s been alone all day.”

“Jill, it’s alright, this is where you live.”

“Stop saying that! It’s not. Take me home!”

A solid fifteen minutes of this ensued. Then Dan was rescued by a brilliant thought. He told my mother that if she was going to stay overnight at her “house,” she needed her pills and would have to go inside and approve him signing them out. My mother looked at him with twisted eyes.

Dan continued. “You know how we sign out your pills everyday, Jill, when you visit? You are at the front desk when we do that. I need you there or else they won’t give them to me.”

Into the rest home she went, and back out she did not come. Trapped. How unbelievably heartbreaking.

We’ve had three drop-offs like this in a row and I am starting to wonder if it is beneficial to take her out so much. She is with me outside of the rest home 4 to 5 times a week. Lately, it just seems to bring her more confusion and irritation.

Yet, when she is not here my stomach goes on roller coaster rides, and after I work I either sleep (3 hours today and yesterday) and then clean my already clean house like a housekeeper on speed. It’s crazy. And I don’t know what to do to stop it. It’s tearing me into tiny pieces and I just don’t know what to do.


  1. Oh Lisa, my heart ached for you when I read today's post. This might be a hard decision, but perhaps it would be best to stop taking your mother on outings?

    If it causes so much confusion for her, and so much heartache for you and Dan, maybe it's best for everyone if you just visit her in the rest home?

  2. What a very heartbreaking situation. It's got to be so conflicting, wanting to take her home with you, but thinking that maybe staying where she is with no disruptions might be better. Regardless, she is so very fortunate to have your caring in her life at this time.

  3. When Jill visits, we watch the "Game Show" network, Little House, and J&K + 8. In those moments, she is very happy. I would hate to minimize that. If Jill did not leave the rest-home, she would sleep most days. Yet returning her to the rest-home is becoming increasingly difficult. Well, like the "Borg" I will adjust to her defenses and make her assimilate! :-)

  4. How I feel for you. I just know what I do, not what someone else should do and maybe I shouldn't be 'giving advice'. I realized soon after Elbert moved into the rest home that he was too confused by change (going out, being in different places) so I stopped taking him out except for a dr. visit when necessary. He is much better satisfied now.

    I know... it's hard to let go but for your own peace of mind and your health (both emotionally and physically) and your Mom's too, it is my opinion that you should stop bringing your mother home. It must be so hard for her to try to bring her mind around where she is, what she is to do. And, it is hard for you seeing her like that. A nice peaceful visit at the rest home would be so much nicer for the both of you.

    And, yes, it's okay to let go. But, you have to give yourself permission to say that you are not being a bad daughter for not bringing to your home but rather you are a good daughter for being so caring and loving and wanting the best for her. God bless you always.

  5. I'm am so sorry . But I know every time we change something for mom it sets her back and sometimes she does not come back. I try not to change anything anymore. It makes you feel good to bring her home but if it confuses her so much it might be a bad thing for her. Keeping things the same it the best for older people sometimes. Good luck. You are a great daughter .

  6. Oh Lisa, what a sad state of affairs. For what it's worth, it seems to me that your mom would feel more secure staying in the rest home where things are familiar now. Better that you make visits to her rather than the other way round. Another step in this sad journey. Hugs to you.

  7. Wow, I can't even imagine how tough this situation is for you. I just came across your blog today and was so touched by this post. You are such a dedicated and great daughter.

  8. Thanks to everyone who posted a comment. It really helps to have all the support. I am going to contact the Alzheimer's Association today and speak with a rep. They are wonderful and I know they'll be able to offer some insight as well.

    Thank you everyone truly. Means so much.

  9. I agree with momsbrain, talk to someone. The Alz Assc has an online site.

    Keep in mind that your mom won't remember. It also means though that the next time, it's all new to her and she will repeat.

    Straight From Hel

  10. Oh Lisa, I'm sending a hug your way. I'm so sorry you are going through this tough time. I'm glad you're blogging about it, and I hope that it's sort of like a journal for you, where you can pour it all out. We're here for you.

  11. I don't have much to say beyond what every one else has said, but I just wanted to let you know that I'm keeping you in my thoughts. This is such a hard time for you and your mother, and you are handling it with grace and elegance.

  12. Lisa, I too cared for my Mother in her home for several years. I was forced to let go, sort of. I literally collapsed from exhaustion and she was placed in emergency respite, then placed shortly after. That was back in 2007.

    From Nov of 2007 till June 2008 I visited her almost every day and took her out on occassion. I was so exhausted. I had to get her house ready for sale as well as the estate itself. I then left in June 2008 and moved to Toronto.

    Well I decided to see her twice a year and the trips weren't easy as I had to pack premade meals ( I have two chronic health conditions that were made greatly worse by being a full-time caregiver) and all my meds and supplements as well as the cat. Yes I was going to take her cat to visit her, damn it, as it made her happy. Exhausted me but made her happy and that was important. It took two flights that did not connect well to get there and back. I was gone from 10 days to 3 weeks. Last November I went for 3 weeks as she had to have surgery. WHAT a situation that was. Truly hell on wheels. Did I mention I was already exhausted before then?

    So from 2006 to, well, about now, I had been struggling to get better to get, a life, my life, back on the rails. I was gearing up to do the summer trip (I would go each Nov/Dec and June) this year and my health completely tanked - I couldn't sleep, had problems eating, got yet another infection, etc., etc. And then it occurred to me, maybe I need to cancel the trip.

    What followed was a day of crying, basically non-stop. I raged at God for once again taking me away from my Mother. I wanted to be there, to hold her hand, do her nails, put lotion on her hands and legs, take her out to lunch but it was not to be. My body was saying a great big back handed NO!!!!! It hurt, it hurt a lot. I realized I was being denied and being told, no,no more.

    Lisa, it occurred to me that it was not Mom so much as myself who needed to see her. Truly she is at the stage where she forgets you have been there as soon as you leave, but other times will remember, then forget and ask when you are coming to visit. Sigh.

    So I realized that I need to let go. I am now planning for the winter trip. I hope to have recovered enough energy to travel out there without collapsing. This all has made me realize that the bonds run deep but some of those bonds have become too tight, too twisted and are taking rather than giving. I need to let go. I speak for myself only. My body, my mind, just would have none of it anymore. It made me very, very sad.

    But yesterday I sent her beautiful flowers as per usual and have her gifts all lined up for not only her birthday coming up but little special surprises every month. I also organize outtings for her with a company that visits the elderly and takes them out for appointments or lunch or what have you. The care home has a very active activities department and they will soon be organizing weekly trips to the national part townsite that is 45 minutes away and she will get to get an ice cream cone and sit by the lake in the warm summer sun. She also has a lounger and sits in the courtyard and suntans during the summer days. Yep, her life there is actually much better than the life I could give her when I cared for her as she was isolated in her own home. Now she is with her peers and like I said, the Activities Department is awesome.

    If it wasn't for the Alzheimer's online site where I read the message boards and get support I would have lost it long time ago. They have been my rock and a better group of people one would be hard-pressed to find.

    So now, I have let go, but still am engaged in caring for her long distance. I pay her bills, organize additional recreation and needs, send gifts, call and I still care. Now, my body has finally put her foot down, period and I realize it is time to recover my health and my life.

    May we both have peace after the emotional tsunami that is Alzheimer's.