Making decisions for Mom means risking her anger and hurt

Mom has changed, she is no longer the realistic practical mom I grew up with. She is whining, complaining about minutia like the texture of pasta, toast that's too light and watery soup. She refuses to get out and meet others; she makes excuses not to walk or talk. I must accept that she will not make decisions for herself any more, that we must decide on her behalf.

Dealing with this change is the hardest part of helping my Mom. She is the one who convinced me to take a class in logic and explained abstract math concepts of algebra. To realize that our roles have completely shifted is difficult. It means admitting that she is dependent on me to make most of her decisions. It means that even though I discuss things with her, I might make a decision that is contrary to her wishes. She can still understand a smart argument for or against something yet her emotions always seem to win out. She can't always apply reason and it's difficult for me to comprehend how that can be.

I am afraid to make these decisions because it means she might be hurt or angry with me. I feel guilty because I feel manipulative. I know what needs to be done and must get her to come to the same conclusion, some times that means telling half truths or filtering the information I provide to her. It's for her own good I suppose but it doesn't mean it feels good to me.

Talk of "home" is ladies last..

Sometimes a simple act has great significance to an elder. Whether they are at home, living in a facility or hospitalized, just a few moments of time spent can lift their spirits for days.

I spent the last week of May in my home town and saw Mom every day. On the way to her room one afternoon I saw a very elderly lady struggling to get comfortable in her chair. Feeling bad, I sat next to her to ask if I could help. We easily began a conversation and it turned out that we had some connections. Fay, age 93, turned out to be the aunt of my cousin and she grew up in the same small Hoosier town as my husband.

Fay told me as much as she remembered about my cousin and we talked about the old businesses in that small town she remembered so well. She brightened up as she described the cafe where she met her husband and how she worked to send him money after he moved across the country get settled ahead of her arrival. I reassured her that the cafe was still open ( it really is) and I told her about recent renovations at the historic county court house, a relatively new building when she moved west in the mid-1930's. We talked of things she missed about the midwest - huge peaches, lightening bugs, the beautiful fall colors and her family. We also talked about things particular to her home town - traffic at a stand still several times a day as long, long trains passed through, the old brick Catholic Church torn down long ago; the fierce wind and hail that build quickly and pound through town and the flooding that used to happen on the south side of town. I know relatively little about my husband's home town, but the things I do know were the same things that Fay remembered very well. Coincidence?

Fay easily remembered both addresses where she lived so I relayed those to my husband who took pictures of the tiny houses and emailed them to me. Our talk lasted only about an hour but she was truly aware and so happy to make a connection to her friends and family; it was something familiar in a place and time where she outlived all her "new" connections. She mentioned that she had not seen much of her family since moving in the mid- 1930's so meeting someone from "home" was exciting.

Before I had a chance to print the photos and deliver them, Fay passed away in her sleep just two days after our conversation. At first I felt bad that I had not made it with the reprints of her home but I guess that after our reminiscing she decided to go there and see them for herself.

Dealing with visits

Once I got Mom to move, I had a deliberate plan to get her settled, ensure the facility understood her needs then leave town to force her to get acquainted. Leaving her there and leaving town was harder than I expected. I didn't want her to feel dumped, isolated, lonely and despondent - I still don't. But, she HAD to get used to it and I needed a break from the emotional and physical demands of the whole situation.

In mid-April I got mom settled into a studio apartment at an Assisted Living Facility (ALF). I saw her daily for 3 weeks and the time was filled with hanging pictures, labeling clothes, sheets and towels; doctor visits; nail clipping; permanents and visits from other family and friends. Then I left town and promised to return in 4 weeks. While I was away, I called Mom every other day, some days she was fine others she cried and wanted to go home.

As promised I returned to see her and saw her daily for a seven days. It was really rough at first; each visit left me frustrated and in tears because she insisted she can live at home just fine. After 3 days I was a wreck and realized that I was feeling physically ill from the stress. To cope I came up with some ideas that enabled me to visit Mom, spend quality time with her and enjoy her company. I still have to be firm about the reasons she's moved - it is safer, she will get her meds as needed and she will eat better. It's become my internal mantra around mom - safety, meds, food - safety, meds, food - safety, meds, food..... To keep my sanity and be good company for Mom, here's what I try to do:

• Keep visits short but go often; stay 30-45 minutes, but go visit twice a day if possible
  
• Get funny: find a funny story, joke or something like that to share during your visit
• Read the paper together, helps keep parent current and give you some common ground
• Go sit outside: often it's the only time they'll get outside is with assistance and some sunshine is good for creating vitamin D
  
• Share a crossword puzzle
• Watch a special program: our favorite are Red Skelton videos and Turner Classic Movies
  
• Do projects: re-organize photo albums; I bought a cheap scanner and left it at Mom's apartment. On our next visits we will scan photos; it will give use time to talk about the subjects and people in pictures, capture interesting family histories, names, dates and relationships.
  
• Go "out" into common rooms for a soda or coffee and speak with other residents, then introduce your parent
• Attend events at the ALF like bingo, concerts or other outings
• Play games; play scrabble, cards, use the facilities Wii for bowling or golf
  

Think of things that would be meaningful and fun for your parent. Ensure that they are engaged WITH you not watching you. Don't forget to take your parent out to family gatherings, most ALFs will loan wheel chairs for easy transport.

Don't wait too long to move your parent

I fear we waited too long to move Mom. We worked hard for several years to keep her at home, until her arthritis made her too weak to do even the most basic things and she neglected to take her medication. We thought we did the honorable thing, working together to keep her at home. But, in the long run, it may have been a mistake.

At this point she is so weakened and crippled by arthritis, especially in one knee, that she can not walk from her room to public areas of the assisted living facility. She is unable to walk, unassisted to meet other residents and refuses to learn her way around. She is isolated and lonely. She feels more alone than ever before in her life and there is nothing we can do about it. We try to visit often, the care givers offer to help her walk but she is unwilling to call them.

This morning I visited Mom and she asked to go home again. I had a pretty bad migraine headache and was quite frustrated after hearing this daily for a week. She has also begun to accuse the aides of intentionally doing the opposite of what she asks which is NOT at all like my mother. I knelt on the floor then sat back on my heels in front of her recliner and broke into tears. Mom apologized and said "I'm sorry to be such a burden..." I told her that it's not a burden but that she must realize that she has severe limitations now and that we just can't take care of her at home. She craves conversation with people she's known for years; the problem is that many of them are dead. Those still living are demented or too deaf to communicate. She wants to share memories and laugh with people who shared her experiences but it is impossible.

Making her totally content is impossible so we must be thankful for moments when we can make her laugh or smile. It's hard for us - the family - to accept that we can't make every moment happy. At least we are going through it together and we're able to help her enjoy things SOME of the time...