Monday, October 17, 2011


I'm back to vent a little. There aren't any good people to really say these things to because then they somehow get back where they don't need to go therefore it is easier to vent here where very few people that actually know me and my family personally can hear...

I'll start by saying that I'm not a fan of children. I don't hate them, I just don't like them a lot because they are usually loud and busy and make me tired. Rusty and I pretty much have always had the same attitude about children i.e. they should be on a leash or in a carrier at all times. I'm not the most patient person in dealing with children and long, long ago made the decision that I have no plans of having any of my own other than the four-legged furry kind.

That said, I think anyone out there who has acted as a caregiver for an Alzheimer's patient will understand where I'm going. In taking care of my grandmother years ago, I started somewhere in the middle and knew very little about the disease. We had not recognized the early symptoms but I remember dealing with the childish behavior, temper tantrums, throwing food, refusing to eat, crying easily, etc. that progressed into anger and sometimes violent behavior. Fortunately, my grandmother was a very small woman therefore she couldn't really hurt anyone too easily.

Knowing more now, I'm really recognizing early symptoms and stages of the disease in my mother. She refuses to go to the doctor so far so I'm working off a "self-diagnosis," if you will but it is there. Before I came home, there were often times she adamantly stated that I had not told her things that I would have sworn I had but I wrote it off to my own mistake since I was working such long ER shifts and so many overnights. I also noticed that she seemed to get upset more easily than I remembered but I thought she was just under stress because things had already started somewhat with my brother at the time. When I came home I was rather shocked at the difference in her.

It did not take long to reach the conclusion that further career pursuit was out of the question and I needed a job to allow me to stay at home. Working with her right now is extremely trying because she is in that stage where she shifts gears, often within minutes, from being mom to acting like a child. Today she got upset and had a first class temper tantrum because she couldn't find a phone book. When I got one for her and looked up the number she was suddenly all smiles again. Unless I cook for her daily all she wants to eat are sweets and that is almost all she will buy at the grocery store unless I send a list or go myself. Things that she used to do and that one would expect a mother to know how to do she cops out on saying she doesn't know how. It would almost be easier if she were constantly like that because I wouldn't have to shift modes so much going from caregiver to daughter and back again over and over. It's also hard to make myself be the caregiver; I've always taken a lot of responsibility in the family and have taken care of finances, big decisions, etc. for years now but this is a step further and a difficult transition.

Because of the time needed for mom, I've made the decision to only work part-time for now. This adds to the stress because it really stretches my finances with student loans to pay, increasingly expensive geriatric pets to care for, and the usual stuff like health insurance, etc. To add to all of that, I feel as if I have a huge mountain of stuff that has been put off and that needs attention but that I can never find time to do. Getting to the lawyer for the will revision, for instance. I really need to get this done before she gets worse... If it weren't for the situation with mom, I would be looking for a different job in a heartbeat although I'm so tired right now I don't know if I have the energy to face new people and new places again. It was suggested to me that I should look into assisted living for my mom but I don't think I can do that, certainly not right now. Mom is an introvert and has always been independent. We live on a large wooded acreage and like our privacy. I don't think she would adapt well to an assisted living type of atmosphere.

A good friend of mine recently advised me that I need to find some hobbies that are unrelated to work to help release some stress and help me to leave work at work. I know these options are stupid and not viable at the moment but I would like to get another horse (I REALLY miss my horses) and go back to school to get a master's in English literature. The obvious problem is that it will further stretch my bursting budget and add yet more responsibility to my load. I doubt that's what he had in mind when he made the suggestion. Another friend and I were talking about the fact that his doctor has placed him on Ambien and an anti-anxiety medication to allow him to actually rest while he sleeps. As he described it, he took work home and worked all night while he was sleeping therefore did not really rest. Sounds familiar but with my susceptibility to the mildest medications can you imagine what that combination would produce?? I had a dream the other night that I was 15 minutes late for work, my boss was mad when I got there even though I had an excellent reason then we had a really busy day and everyone but me left at 5:30 sharp while I stayed to finish what was left. It was very vivid down to the details of facial expressions and what was said. No need to say it; I know I ain't right. Which, by the way, is what I plan to name the next dog that I acquire, "Ya Ain't Right!" 'cause I say that so often to most of the herd. There has to be a touch of insanity to live with me, you know.

Last anecdote that I'm going to share tonight. I have a white long-haired cat with a bobbed tail that I named Katrina. I also call her the white witch with good reason. Mom thought it was wrong to name her Katrina so soon after the hurricane hit but it seemed appropriate for this cat. She is one of the sweetest and most lovable cats I've ever met; she loves to sit in your lap and just be loved. Until something sets her off. Like the day that I tried to catch Sprite, my feral cat, and she leaped through the air to attack Sprite who I had in my hands. I got the raw end of the deal that day although Sprite was so frightened that she hid for 2 weeks straight. Today, Katrina attacked Solitaire and bit his ear so that it was bleeding like crazy then would not leave him alone. I think she got mad because the food bowl was near empty... Crazy cat. The NurtureCALM collar has helped but not eliminated the problem behavior for her.

OK, I've complained enough for now and should probably go to bed since I have to work in the morning.


Anonymous said...

Sorry things are so tough. Re. the horses - could you find one to ride without owning it? Sometimes people will share board or something - a lot less cost and responsibility. Just a thought. Hope things smooth out for you.

Anonymous said...

Oh, dear. I'm sorry about your mother. Now for some thoughts from one who has been there.

We (I, my sister, my parents, assorted relatives, and hired aides) cared for my grandmother in her home until we could no longer keep her at home. Our definition of "can't handle this"? My grandmother became incontinent, at which point she entered a nursing home, which was horrible. We had no choice. My grandmother died of Alzheimer's about 10 years after we first noticed she had a problem (her longtime physicians and attorney were useless). She lived alone, and though she lived nearby and we visited often, she was very skillful at concealing her memory loss and we suspect it started at least 3-5 years before we became suspicious. We figured that out when we began to review her financial records and repair the disaster we found, though she'd always been meticulously organized. We were fortunate in that my grandmother never became abusive, nor was she prone to wandering, but we dealt with other issues: stove gas shutoff (she was oxygen-dependent); encouraging her to eat appropriately (nutritious, regular meals, no spoiled/expired food, etc.); serious termite infestation; letting her lifelong-indoor cat out in subzero weather; hiding the car keys, then removing the distributor caps to all of the cars (where was she finding spare keys?); arguing she could not wear stained clothing for days; power loss followed by waking up at 2AM and insisting it was 6AM "time to get up"; agitation when she watched the wrong channel on TV (we had to pull the plug for the week after 9/11). I could go on and on and on.

Yes, my family did the bulk of the caregiving, but after a certain point we had to hire caregivers to ensure she'd eat, sleep and generally stay safe during the few hours all of us were away. We probably went through half a dozen over the years, but they, unlike us, had no problem making sure my grandmother showered, were willing to pop a prepared casserole in the oven and feed my grandmother dinner before we arrived home, and encouraged my grandmother to play cards, puzzles, supervised baking cookies, etc. At minimum, the aides kept her safe and made sure she didn't detach her oxygen or attempt to go for a walk in the woods - uncommon for her, but we lived in the middle of a state forest with multiple bodies of water, and the consequences of even one unaccompanied stroll could have been deadly. They also prevented her from becoming agitated and calling the police, who knew us well.

Assisted living is an idea to investigate now. Collect the information and put it away until you and your mom are ready. If this is Alzheimer's, your mom may come to a point where she doesn't mind the idea, because of the personality changes associated with the disease. Collect information on respite and meals on wheels as well, because there will be days when you can't do everything. The local senior center may offer resources or volunteer programs, and that may be a way to bring it up with your mom that isn't insulting (e.g. "hey, mom, they're offering a music appreciation class, and I know you've always enjoyed the symphony").

In our situation, it took 3 live-in adult family members, more family in the area, and a series of caregivers to manage my grandmother, and it still wasn't pretty some days. I cannot imagine doing it alone, not because I didn't love my grandmother (I miss her every day) but because in retrospect I know it would have been impossible.

I read "The Last Childhood: A Family Story of Alzheimer's" and really connected with what the author, Carrie Knowles, had to say. I think it's out of print, but Amazon or your library may have copies.

Hang in there, and remember: it's not selfish to take care of your needs. As they say on airplanes, apply your own oxygen mask first...