Thursday, September 26, 2013

Growing old sucks...

You read it in magazine articles...we are the "sandwich" generation: caring for our kids on one side and our aging parents on the other. I lived through this with my mom the past few years.

My relationship with my mom had always been strong...there was never any angst or resentment. We were similar people in that we expressed our emotions (ie sometimes blew up) but then got over it quickly and moved on. I am the baby of the family and admittedly spoiled, plus I think by the time parents get to the youngest of a large family (I have four siblings), they are just worn out! I was an easy kid in that I hated high school and didn't really socialize so they didn't have all the usual worries that go with having active, social teenagers, though I'm sure my mom worried about my lack of social life (I made up for this in college!) Anyways, what I'm trying to express is that my mom and I were always close. Before she was gripped by dementia, I'd call her several times a week. Often on the pretext of a cooking question but really just to tell a story about something the kids did, share a frustration, anything really.

Once my father died she moved north from Florida and lived for a couple years in an over 55 apartment community near my sister. But in 2010 she got to the point where she needed assisted living and we decided to move her close to me where there was an excellent Quaker assisted living community 10 minutes from my house.

I was panicked when she first moved in this close to me; my first son was in college, the second in high school, I was working and volunteering a lot at school and on the board of their former elementary school. I definitely felt squeezed. I cut back on some volunteer commitments (came off the board) but was still incredibly busy.

However the first few years went fairly smoothly. I would see my mom at least twice a week, usually going to get our nails done and have lunch during the week and then have her over for dinner on the weekend. She had dementia but still knew who I was. She would feel guilty that I was doing stuff for her, as she used to be the one who did so much for me. I think that is one of the hardest things for people as they grow old...the frustration of not being useful or having something productive to do. I would tell her that she took care of me all those years and so now it was time for her to let me do things for her. She had a hard time accepting this as she had always been the type of woman who took charge and took care of others. Little things helped: if I showed her how I wanted it done, she could chop vegetables for the salad and set the table when she came over for dinner.

Going out with her was actually fun. She charmed everyone in the nail salon and the local restaurants. She always had something nice to say about whoever was serving us, whether it was commenting on how nice their hair or jewelry was, or saying how much she liked their tattoos! After our jaunts, I would usually come home and have a "cute Nana" story I'd share with my husband and son, much in the same way I used to share "cute kid" stories with her as the kids were growing up.

One of the interesting things with her dementia was that most of her memories were from the time before she got married. She remembered her childhood quite well but had to be reminded of my father, whom she had been very happily married to for over sixty years, and with some prompting could say her kids names. The grandkids, she forgot which is so ironic as she was the BEST grandmother...always baking their favorite cookies, making their visits so special and being there at a moment's notice to help out with them. Someone in geriatric care described the memory issue as "first in - last out"..think of it as packing a large truck: the memories that have been there the longest are the last to be forgotten. This was particularly evident when we passed by a mirror in a restaurant. She was always shocked at her appearance, and would ask who that old woman her mind she was still the lovely 18 year old.

Starting in the fall of 2012, she took a turn for the worse. As I was returning from a trip, she had to be taken to the hospital. This was the second time in about a month but because they had the EKG from the first visit (an ER visit that she insisted on cutting short), they noticed that she had had a very mild heart attack. The cardiologist wanted to operate on her but I wouldn't let them as she was 86 and with her dementia, I was worried about what the anesthesia would do to her. It took us 4 or 5 days to get her out of the hospital and it was a terrible experience. She had to have someone by her bed side constantly because she was so disoriented and agitated. She kept wanting to pull her IV out and get out of bed. My sister and I took shifts being with her. When she finally left the hospital, she went into the rehab side of the facility she was staying in but again was so agitated because she wanted to be back in her own place. She was able to walk and feed herself without a problem, so they moved her back to the assisted living side quickly and she calmed down.

However I really couldn't take her out anymore so our routine shifted. I would bring meals into her and we would sit and talk or listen to music. When she was in the hospital, we would go through photobooks that I had created on Shutterfly of the family. Now back in her own room we continued to do this. But her world kept getting even smaller.

When she returned from that trip to the hospital, I told the assisted living staff that I did not want her taken to the hospital unless I was consulted first. I felt that going to the hospital has set her back so far, and at her age and capacity, I didn't want her sent for something minor. This may seem cold but the hospital experience was so awful for her, I felt it best to be avoided if at all possible.

In February of this year, she had another set back and finally had to be moved into the skilled nursing side of the facility and was put on hospice care. We were incredibly fortunate that my mom had the resources to be able to afford all this. The care she received both in the assisted living and the nursing side was incredibly loving and caring. Again, my routine shifted to now visiting her there several times a week. By now, she really didn't know me, but she was always glad to see me. She would ask me why she loved me so much? I would explain that I was her daughter, the baby and that would make her happy. I had trouble staying long on these visits. Sometimes she couldn't communicate with me, though at times she could and every once in a while I'd see a sparkle of her old self in her eyes.

I had planned our two and a half week trip to Italy as a graduation present for our boys (one graduated from high school, one from college) for over a year and when I left in the middle of June, I kissed my mom good bye and told her to hang on for me. I told my siblings who were nearby not to contact me about my mom while we were on vacation. I felt I had been the first line of care for her the past 3 years and I had been there for my mom.

Well, as we landed home in Philadelphia, I received a text from my sister to call immediately. My mom passed away while we were awaiting our connection home  in Toronto. Apparently my mom stopped eating a week or so after we left for vacation and as requested, my siblings didn't tell me. I know it's silly but I kind of feel like she decided that since I stopped coming to see her it was time for her to go. That makes me sound more important than I am, but you get crazy guilt feelings like that.

I didn't cry until my sister and I went into her room to clear her stuff out. Seeing her room without her in it, smelling her scent, was too much and I sobbed like I've never cried before. On the one hand, I had really lost her years ago to dementia but the reality of losing my "mum" hit home.

Growing old sucks...I have so many friends who have lost parents during this past year or are going through trying to figure out how to care for aging parents. When my mom was in assisted living, I felt guilty to an extent because I felt like she would be much happier if she was living with us. But I knew this would take a toll on me and the rest of my family that she wouldn't have wanted if she was in her right mind (and she herself did not take this on with her own father). I was fortunate in many ways, in that we had time to plan the next steps with my mom, and she had the resources to be in high quality care facility.

I think I wanted to share this because I know a lot of people are going through it, and the feelings of frustration, guilt, the feeling of being squeezed on all sides: wanting care for your parents but being pulled by your primary love and commitments to your own kids is sometimes almost more than you can bear. The only thing I can say is that it doesn't last forever, you can only do the best you can and make sure that you don't sacrifice your relationships with your siblings, your kids, your spouse.Your parents wouldn't want that.

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