For my first entry in 2008, I am sharing something I find very powerful and profound. These words are from Dr. Dan Gottlieb, a psychotherapist. He shared them in his keynote address at the Frontotemporal Dementia Caregiver Conference in 2005:
"You (caregiver) do not suffer because of them (person with a dementia). They have a disease, a neurological illness, that's a fact. But that's not why you suffer.
You suffer because you love. If you did not love, you would not suffer. And the more you love, the more you suffer. Problem is, when you try to do something you cannot do, or be something you cannot be, the guilt, shame, anxiety and fear makes the love go underground ... and you can't feel the love anymore. Love is learning to live with your helplessness in the face of your loved one's suffering."
I look forward to our dialogue this year. I hope you find some relief in writing your own thoughts and some comfort in the reading the words of others.
Source : By Angela Lunde
Sunday 30 March 2008
YOU SUFFER BECAUSE YOU LOVE
WITH ALZHEIMER’S YOU CAN STILL HAVE A GOOD LIFE
Here at the Mayo Clinic, I, along with my colleague from the Alzheimer's Association, facilitate "Memory Club," a group for persons with early Alzheimer's disease and their care partners. Here is what one of our former participants shared:
I worked as a computer engineer for 35 years. Several years ago I was having some problems. Things were not right. I had tests to see how my memory was. I was told I had Alzheimer's disease. I was 64 years old. I wondered if they could fix my Alzheimer's disease. I wondered how many others were like this. I wondered why me, I was too young.
Things have changed for me over the past couple of years. I spend more time looking for things. I get more frustrated. When I start to say something the words float away — that's the hardest.
I don't mind telling others about my disease. I want them to know why I am struggling. Telling others helps me cope.
I have 4 children and 6 grandchildren. I have 2 sisters. I have good friends. Being with others who accept my disease helps me cope.
When I am around people I usually have a good joke. I can't change the past, and I can't change what the future brings, so I choose not to worry about it. Humor helps that.
I participate in an early stage support group with others going through a similar situation. I find it helpful to be with others like me and see how they are handling it. Alzheimer's, from what I can tell, is not going away anytime soon. My support group helps me cope.
Most of all, my wife makes it possible for me to cope even though I know it is hard for her. She worries about the future.
Someday they will fix this disease. People are working hard on it everyday. I don't let this disease get the best of me. You can have this disease and still have a good life. It is important for people to know this.
Source : By Angela Lunde
SHARING THE PAIN OF EARLY ON-SET ALZHEIMER'S
The responses from my last posting makes it clear that young onset AD is painful beyond belief and there are as many experiences in living with the disease as there are persons diagnosed.
My purpose was not to minimize the depth of the despair you are going through. I have heard from some patients with young onset AD that despite the devastating shock, numbness, and overwhelming sadness of the diagnosis, there was some relief in knowing they were not 'lazy' or 'crazy' and that their symptoms are due to a real neurological problem.
I heard a gentleman diagnosed with young onset AD speak at a conference last year. His words were powerful. He said, "Please do not mourn the fact I am not who I was, or you want me to be, or we both miss this moment when we focus on yesterday or last year or twenty years ago. We miss living together today, we miss the chance to love, and to laugh, and to be all we can be today, when we are mourning who I was."
I invite you to see some men and women with young onset AD speak openly about their experiences on a Web-cast from our "Meeting of the Minds" conference that took place in 2007. You can find the link below.
More than anything, I am humbled by your words and I am grateful for your candid sharing.
Source : By Angela Lunde
LIVING IN THE MOMENT, IS GOOD MEDICINE
We know that dementia damages brain cells, but like many of you I do not believe it destroys a person's humanity or the need to be in relationships with others and valued as a person. Dementia does not erase a person's individuality; it is one aspect of a person with a rich history that came before the diagnosis.
In collaboration with the Alzheimer's Association, I facilitate a support group for persons with early stage Alzheimer's disease and their care partner called 'Memory Club'. One of the most meaningful activities comes when each member is asked to bring in something about them, past or present. It is at this time when we are deeply aware of the unique individuals within our group.
The time they spend sharing their photographs, art work, model airplanes, awards, poetry, music (just to name some) reconnects that person to who they are and affirms for all of us that what defines them as an individual is far greater then a diagnosis of dementia.
Yet, the group is not about ignoring what brings them together. They talk about their disease and fully acknowledge that at the present time there is no cure. They candidly share the changes and losses they are experiencing, but in a safe and supportive place. I believe for each of them, the quality of their life is best reflected in the experience of the relationships they share at any given moment on this undeserved journey. The most important moment for a person with dementia is often the present moment.
I was touched by a recent posting that went something like: I could have had more 'semi-quality' time with my husband if I'd lived more in the moment. But it's very hard when you ARE mourning who the person WAS, what could have been, and worrying about the future. These well spoken words reflect that living in the moment in the midst of fear, anger and loss
Source : By Angela Lunde
INTIMACY IMPORTANT FOR ALL
The news of Sandra Day O'Conner's husband with Alzheimer's and his romance with 'another woman' probably struck a chord with many who heard the story. I believe this story is less about romance and love, and more about one's basic need for connectedness and human contact.
Obviously, people with advancing Alzheimer's have basic needs including good nutrition, a safe environment, and adequate hygiene, but other things are needed to be reasonably happy. These include a community to belong to, a sense of purpose or meaningful activity, and intimacy.
Intimacy provides a feeling of belonging, comfort, safety, and reassurance — feelings often lost or fragile with Alzheimer's. In fact, a person with Alzheimer's may need intimacy more than ever.
To me, connecting with 'the other woman' was indeed innocent in part because he lacks the ability of intentionality. That is, he is certainly not intentionally harming his wife. He has lost the ability to cognitively understand that this is not his wife, or possibly he has forgotten that he has a wife. Nevertheless, it seems impertinent for anyone to judge the ethical nature of his acts.
He truly is expressing one of our most basic needs, that of being connected to other humans. In one sense, he is displaying the most human element in all of us. Perhaps we should be inspired by this demonstration that we are all truly 'wired' to be connected to others, and even take comfort in this essential human truth.
Source : By Angela Lunde
HELP, SUPPORT CRUCIAL FOR CAREGIVERS
I facilitate a men's care-givings support group. Twice a month 5 to 10 male caregivers gather around a table finding support in one another at a time when it can feel like no one understands. It is here they find companionship when isolation can be a problem. The men listen and learn from one another.
I remember Joe. Joe had been a caregiver for his wife in their own home since her diagnosis of Alzheimer's disease. Joe frequently looked to the men in the group for answers to the difficult situations that impact all caregivers. I imagine Joe was apprehensive at first, as are many men.
He was a quiet and reserved gentleman and probably felt most comfortable handling his affairs privately. But somehow Joe found his way to the group and continued to come for several years.
I clearly recall valuable lessons that Joe taught all of us. He reminded us that to care for a person with dementia meant helping them to maintain their personal identity and sense of dignity. I remember Joe telling the group that when it came time for him to help his wife with her hair, makeup, and clothing, it was important that he do it 'just right' because his wife was always particular about that sort of thing.
And when Joe started looking at day programs for her to attend so he could have a break, he looked for a place that was "pretty" because Joe said his wife always liked the things around her to be pretty. For Joe, caring for his wife meant respecting her for the person she had been and the person she was at any given time.
What I valued most in my time with Joe was observing the transformation that took place within him. Over time, he learned something very important in the lives of caregivers. Joe accepted that asking for help and support was not the same thing as being needy or dependent.
He recognized that it was only by asking for help and making use of available resources that he could provide his wife the best possible care. Joe is a reminder of the humble and caring act of accepting help.
Source : By Angela Lunde
FACING DIFFICULT TIMES
From time to time I receive updates from families on their journey with Alzheimer's. What follows is a letter I received from a care-giving wife during a difficult period. This piece may feel uncomfortable to read; however, the writer's open and sincere words remind us all that we are not alone.
I am sending the latest progress report with a very heavy heart. My husband Rob is having catastrophic outbursts every time I try to bathe him. This happens in the morning when I get him dressed, and it happens in the evening but less often. At the present time, I have morning help from a strong gentle male nursing student along with the staff at day care he attends. But even with three of us, it is almost impossible to get him into the shower.
I am learning not to push Rob to do anything he doesn't want to do. I let him sleep in the mornings and I sponge him off rather than using the shower. He sleeps in his clothes at night or spends the day in his pajamas. In every other instance he is his calm, gentle self but when someone tries to change his clothes he can become like a caged animal, wild-eyed and ferocious.
He has dreams or hallucinations at night. It appears like he is talking to someone in the room. Rob does not seem upset by this presence and sometimes he wakes up laughing.
I am way past tired and I'm a little scared. I realize the time has come for Rob to be moved to the Alzheimer's Unit. In a way, it is a relief to come to this realization because I never knew how I could make the decision. But now, even with help, I can no longer care for him at home.
I was shocked today to get a call that there is a space for Rob and he can move to the Alzheimer's Unit on FRIDAY. As you can imagine we are feeling all sorts of mixed emotions! Of course, I am feeling deep sadness and regret. However, I do know that I did the best I could ... and so did Rob!
Source : By Angela Lunde
DEPRESSION COMMON AMONG CAREGIVERS
I am frustrated, full of anger. Sometimes I lose my temper and blow. Then I feel guilty. Even when I don't lose my temper, I feel guilty. I am grouchy. I have lost a sense of who I am these days. I grieve. I am sad and I cry, uncontrollable at times. I do not sleep well. I am lonely and I am fearful. Who am I?
I am the spouse of someone with Alzheimer's.
Does this resonate with you? For some of you, I know it does.
Think about it, many of you 'work' as a caregiver 7 days a week, 24 hours a day. And even if care-giving is something you think you do reasonably well, it can be hard to find satisfaction as a caregiver when your loved one's condition only declines. It is difficult to feel good about yourself when everything around you is unpredictable and unreal. It is tough to feel happy when you can no longer find the time to do the things you enjoy and that bring meaning to your life.
According to the Alzheimer's Association, more than 80 percent of Alzheimer caregivers report that they frequently experience high levels of stress, and nearly half say they suffer from depression. It's not difficult to see why.
All of us certainly experience negative feelings from time to time. But according to the Family Caregiver Alliance, "when these feelings become more intense and leave caregivers totally drained of energy, crying frequently or easily angered by their loved one or other people, it may well be a warning sign of depression."
Many of you have written on this blog and shared concerns about yourself, or expressed support to others related to the challenges of care-giving. I want to offer my genuine appreciation. Circles of support, of all kinds, are incredibly valuable. If you have signs of depression, I hope you seek the medical attention you need.
Depression amongst Alzheimer's caregivers is more common than most of us realize and deserves to be treated with the same attention afforded any other illness.
Source : By Angela Lunde
Alzheimer's: How To Help The Caregivers
Alzheimer's caregivers need all the help they can get. If you'd like to help, but don't know how, here are some tips.
Everybody says the same thing when a friend is going through a difficult time: "Let me know how I can help." But such offers are often difficult to accept — primarily because they're not specific.
It's much easier to accept concrete offers, such as:
- "I'm going to the grocery store. May I pick up a few things for you?"
- "I've got a couple of hours free tomorrow afternoon. May I sit in for you while you run a few errands?"
- "I made an extra big meatloaf so that I could share it with you. I brought enough to last you for several meals."
- "Do you need some laundry done? I can come over today and do it. Or maybe I could help you sort medical bills or do dishes."
Even sending a card or making a phone call means a lot. Often visits are even better. Sometimes a caregiver just needs a little contact with the outside world. Caregivers can feel trapped in their own house. It's all too easy for them to become enmeshed in the duties required to care for a person with Alzheimer's, and sometimes it's difficult for them to even recognize that they need a break or help.
In addition, some caregivers have a difficult time accepting help. They may believe they should do everything themselves. This attitude can be harmful not only to the caregiver, but also to the person with Alzheimer's.
Signs and symptoms of caregiver stress include denial, anger, social withdrawal, anxiety, depression, exhaustion, sleeplessness, irritability and lack of concentration.
Be gently persistent in your offers of help. Remind caregivers that they can't take care of someone else if they don't take good care of themselves first.
Source : Myco Clinic
