Keeping Perspective

March 30, 2011

Doesn’t it feel like the recent prevalence of natural disasters hitting various parts of our world has caused a shift, a disruption in the course of many people’s lives all over the planet? Lately there seems to be so many people beset by maladies, family problems, and economic woes, much more than the normal ebb and flow of life usually hands out. Here at our house, things have not improved since my last few posts. Just when the family all seemed to be in agreement that my mother needed the care of a nursing home, my father has decided that he won’t go along with that. “No, I can’t do it.” They want to go back to Florida where they will be alone, with no help, no support of any kind. Where a few short weeks ago, if we had not intervened, we strongly believe that my mother would have died from improper care. We can’t allow that. So, in the interim, or should I say, today, they’ve agreed to renting an apartment or house here, near my brother and I, and hiring a caregiver. Of course, now I have to find an apartment, find a caregiver, furnish the apartment, and oversee medical and daily living needs, as well as supervise the caregiver.

This all has to be done while I’m in the midst of getting Lauren’s new home finished (Mother Nature has delayed the start of the home thus far and they are predicting more snow tomorrow.), shopping for furniture, getting things painted and decorated, and organizing the move in process. Lauren has become increasingly irritable lately which I am attributing to the turmoil in our home. Turmoil caused by the number of strangers coming and going - new noises and voices - associated with my mother’s care. And, there has been disruption to Lauren’s normal schedule due to staff needing to deal with the turmoil and strife in their own lives. She is not weathering this all well. There is so much change in her life recently and coming up in the months ahead. I am concerned with how she will deal with it. Lauren has a limited ability to understand what is happening, and I don’t know how to simplify the madness that seems to have descended upon us. Heck, I really don’t understand what is happening or how to deal with it either. How can I expect her to understand?

I can identify with her complaining, her need to voice her confusion and displeasure with what is happening in her life. I may appear to contain my own frustration except for the few tears that leak out every once in awhile. But I have become all too well acquainted with the little person in my head stamping her feet in tantrum at my inability to control my own life, to be able to choose the course I will follow. ....And then I think of those poor people in Japan. I’m sure they had plans too. They’ve lost so much, so very much. I still have my home, my loved ones, the acquisitions and treasures that color and inhabit my world. Instead of looking across the hills in search of the promise of spring, I could be looking in fear for radiation-infused clouds. Perspective is a valuable thing.

Finding Serenity

March 23, 2010

In my last post, I wrote about the guilt associated with relinquishing the role of active, primary caregiver for both my daughter and my mother. In the last few days I’ve been able to come to terms with much of that guilt - with a little help from a friend. Her very timely missive was a copy of a prayer that I’ve heard many, many times, but apparently I needed to hear it again. “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

I am not responsible for the situation in which my parents find themselves. I won’t share the details, but I’ve been taken advantage of for many years by my parents and I do not have to let that continue. My mother will have to accept her current state of health, much of which has been caused by her own non-compliance with doctor’s instructions, and she will have to deal with spending the rest of her life in a skilled nursing facility. My father will have to either make the necessary changes in his lifestyle or realize that family will no longer be able to help him. "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

The changes we are making in Lauren’s life right now are appropriate, timely, and well thought out. We are giving her every opportunity to live a comfortable and safe life. We will continue to guide and oversee the course of her life for as long as we are able. There is no doubt in my mind that we are doing the right thing. It is time to let go. "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

Thanks, K for always sharing the right words at the right time.

Dealing with the Guilt

March 15, 2011

My grandson was visiting last weekend. He hasn’t been at our home for two years – when he was four. I have only seen him once since he was here last because he now lives in Florida. Memphis is a quiet, shy child with a sweet smile and beautiful, long lashed eyes. He walked into the house and seemed to curl into himself in the corner of the room. Concerned, his father asked him what was wrong. His only memory of our home was being left there when his parents would have to go somewhere. He had a serious case of separation anxiety when he was little, and his parents would wait until he was distracted to sneak out of the house. This stalwart little boy would not cry when he discovered them gone. He would curl into a ball on the floor, inconsolable, taking no bribes, and he would not talk or move, sometimes for hours. I would lie on the floor next to him, just letting him know with my presence, that he was never truly alone. Now that he has returned, we find that his memory of our home is laced with fear, overcoming all memories of cookies and milk and grandparent’s hugs. He has clung to the strongest emotion he felt in our home.

I am sure that Lauren feels contentment in our home where she has only experienced wonderful care and constant love. But she is about to move into a new home now – without me. She has heard my voice and known my kiss on her soft cheek almost every day of her twenty-five years. Will she feel abandoned in this place that will take time for her to know as “home”? I have a transition plan all worked out. Over four weeks she will gradually spend more and more time in her new home along with her family and staff. Will it be enough? How do I tell her we’re doing this for her benefit, for her long-term well-being? Can she understand that, even though I may not be with her every day, I will be a significant part of her life for as many years as I have left? Even though I feel that I am doing the best thing for her in the best way I can, I feel guilty that she may feel that I’ve deserted her.

And now my mother is also receiving care in my home. I cannot continue indefinitely to provide the level of care that she requires. We’ve weighed all of our options and realize that a nursing home is the only safe, long-term option to meet her needs. In the weeks since we brought her to my home from Florida she has been enfolded in the warmth and care of her family. She is better than when she first arrived. Her pain is better managed. She is eating better and is more lucid. How do we now tell this eighty-nine year old woman that she needs to go live amongst strangers, by herself, except for visits from her family? We have to have this discussion, but I don’t even know where to start. Mom has gotten increasingly self-involved as she has aged. I know that she will not be able to see beyond what she will feel is abandonment. She will not factor, anyone else’s life or responsibilities, into her reaction. I’m afraid she will shut down and decline even faster than she is right now. Will a nursing home be a death sentence for her? If she doesn’t move to a nursing home, it will significantly affect my health and extinguish the glimmer of the life I was hoping to have once Lauren was settled in her own home. I’ve dedicated twenty-five years to providing total care for Lauren. I do not have the patience or strength to step into that same role with anyone else, even my own mother.

My role has been the protector, the caregiver, the anchor for anyone in my family that has needed me to assume that position. It is hard to admit my limitations, to balance my own need for a life, with relinquishing my life to care for others. I have lost the knowledge of who I am and what I want in order to fulfill the roles of parent and daughter. It is time for me to reprioritize my responsibilities in the lives of my family members. So much guilt goes along with that, though. So much guilt.

Caffeine and Anger

March 9, 2011

I’ve been getting through these last few days on caffeine and anger. Caffeine clears the fog out of my sleep-starved brain and anger gives me the adrenaline rush necessary to get through the day. And, there’s a lot to get angry about. I am angry at my parents for not planning, in any way, for the day that one or both of them would be sick or incapacitated. I am angry that they gave no consideration to my situation – providing all consuming, 24/7 care for my daughter for the last twenty-five years, care that will never really end. I am angry that, now that their circumstances and needs have changed so dramatically, my father is still being stubborn and difficult as we try to meet my mother’s needs.

I’m also angry at the insanity of social service systems. It is insane that we have two completely different systems and points of entry for individuals with developmental disabilities and geriatric care. Much of their needs are basically the same. It is interesting as well, that although services for the developmentally disabled are designed for individuals who will most likely not have any dramatic changes in skill level or health, services to meet the needs of the geriatric population concentrate on those who get sick and need to convalesce and those who get sick and decline rather quickly to the inevitable. They are not designed for those who linger. The services that are available disappear if you do not improve or you do not deteriorate.

I met with the hospice social worker yesterday. She provided a crash course on the service system for the elderly. A nursing home will not provide the level and quality of care that Mom needs, and that we want for her. A 24/7 caregiver would, but will probably deplete their finances in about three years and then Mom would end up in a nursing home anyway. Plus, Mom and Dad have nowhere to live in New Jersey and cannot afford  New Jersey real estate prices (remember that my husband and I need to downsize and my brother has no room.). My parents spend about $4,000 a year for rent and utilities in Florida. That is far below what it will cost to live in New Jersey. And if all of their money goes to care for my mother, what about my father? He still needs to have money to live on, and eventually, will need money for his own care.

After spending so much time over the last few years trying to find a way to provide Lauren with a home of her own where she can receive the care that she needs, I find myself asking the same questions about my mother – How can this possibly work financially? How can we provide an acceptable level of care? Does this really have to be this difficult?

Well, my last cup of caffeine is wearing off, time for a booster cup. I am not going to find the answers to my questions today. Today, I will just continue to ride the wave of anger.

Exhaustion and Frustration

March 5, 2010

This week has actually been worse than I thought it would be. I am beyond exhausted. Suffice it to say that I put my bra on over my pajama top yesterday. I’ve lost six pounds since this began. Mom becomes very groggy and unfocused on the pain meds. It is hellish to try to do a transfer with her for at least six or seven hours after a dose of medication. She can’t figure out how to move her feet, answer a simple question, or eat. Unfortunately this is also PMS week for Lauren. She is having major mood swings and is very irritable. That means that she is very noisy and vocal, doesn’t sleep well. I’m averaging about four hours of sleep a night. I’m a little dizzy with a slight buzzing in my head.

My family has been helping as much as possible this week. My sister-in-law and nieces have been coming in to help me shower and dress Mom as well as put her to bed. But the hours between are filled with bathroom trips, coaxing nourishment, and attempts to provide some stimulation to take her mind off of the pain. The doctor had the Visiting Nurse Association contact us and after some discussion they recommended hospice to meet Mom’s needs. The hospice representative spent three hours with us, a lovely woman who was respectful of my father’s feelings and empathetic with our situation. She said they could provide us with some equipment, twice weekly nurse visits to ensure the best formula for pain management and two hours, five days a week of a home health aide. Not nearly enough to meet our needs, but it was something.

Twenty-four hours later I realized that the service system for seniors functions much like the service system for the developmentally disabled – erratically and insufficiently. The clinical supervisor called to tell me that Mom was not eligible for hospice services. She never came right out and said it, but apparently she isn’t sick enough. An eighty-nine year old woman who requires total care and is in excruciating pain, I guess, doesn’t fit the parameters for hospice. Shouldn’t the woman we spent three hours with have known this? The supervisor said that they would stick with us for a couple of weeks and then probably determine that they could no longer serve Mom. The home health aide will come, but the two hours includes her travel time – they serve two large counties. They can’t guarantee what time she can come. Won’t it be helpful if she is here for all of fifteen minutes watching Mom sleep?

Tonight will probably be another sleepless night. My brother and I are going to talk to my father tomorrow about what to do next. It will be a very difficult conversation. He still thinks they will be returning to Florida – avoidance, stubbornness, delusion? I don’t know. I hope Lauren is feeling better by tomorrow; I don’t need the added stress of knowing I can do as little to address her discomfort as I seem to be able to help my mother’s.

The Long Dark Tunnel

March 2, 2011

The light at the end of the tunnel has been snuffed out. I had thought that after years of endless care, I had finally reached a different point in my life, a time when not only Lauren would achieve independence, but I would as well. But, it’s over before it started.

My parents arrived Sunday afternoon. My mother is far worse than I thought...and I thought she would not be good. The motorhome my brother and sister-in-law rented to pick up my parents arrived in our driveway on a beautiful, sunny afternoon. I jumped in to greet them, took one look at my mother, and my sister-in-law said the color drained from my face. The woman lying on the bed was like a fragile shell of the woman I had been with only six weeks before. Trying to get her out of the motorhome and into the house was difficult and painful. It hurt her even to be touched. We had to put her on a chair and carry the chair inside. She could stand for only a minute at a time and it seemed like she had forgotten how to move her feet.

How would I care for her? How could I toilet her? Get her in and out of bed? She couldn’t move herself once on the bed, and we couldn’t do it for her without intense pain. How would I do all this on top of what I’m already doing? I have two intense months ahead of me. It will be a lot of work to get Lauren’s home ready and her into it. I need to get my own home ready to go on the market. We need to find a new place to live. We want something small and easy to care for. Where will I put my parents?

After a night’s sleep, some food, and more rest, Mom perked up a little. She could move her feet if we told her several times which foot to move, but barely long enough to transfer out of the wheelchair. We took her to the doctor on Tuesday. He gave her stronger pain medication. The doctor knows me, knows Lauren, knows what my life is like. I dreaded him telling me that my mother needed to be in a nursing home, and yet, was crushed when he didn’t.

It was a long morning today. I got Lauren up, dressed, fed, toileted, and in her stander. Nancy is off today. Then with my niece’s help I got my mother up, toileted, showered, dressed, and fed. I then went to take Lauren out of her stander and noticed that she had wet through everything. I then had to change Lauren and get her settled back in her chair with her mp3. I hadn’t even washed my face yet. I had planned to get up early and get myself put together for the day, but there had been too many sleepless hours during the night when I was trying to figure out the future, come to terms with the end of the life I was anticipating. I finally fell asleep in the early morning hours.

And what about George? I promised him that after all these years of my having to put Lauren first, that his time had come. If we don’t have this time together now to travel, to be spontaneous, to simply experience freedom like we never have....when will we? George is seventy-five – it’s now or never.

There are so many thoughts, fears, and a myriad of emotions dragging me through this day that it is overwhelming. Mental exhaustion on top of physical exhaustion....really bad mix. The tunnel that I thought that I glimpsed the end of, has gotten narrower and darker than ever before.