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Caregiving for Alzheimer's Disease: Flower's for Julia

Alzheimer's disease brings a completely different set of emotional and financial issues for families caring for aging seniors. The disease progresses slowly on some days and quickly on other days. Family members experience their loved one leaving them emotionally as they witness the physical decline. Many seniors with Alzheimer's disease will eventually need around-the-clock care and these senior care costs will become a challenge for our nation as we fight the disease. The Shriver Report found the societal impact of Alzheimer's disease on government, families and business totals about $300 billion per year.

Identifying Alzheimer's disease early helps families to better prepare for the progression and plan for caregiving services. The following story is an interview with one of the spouses of a woman my senior home care agency provided senior care services for on days when family caregivers could not be there.

My Interview with Caregiver Jack McHugh, as Told by Jack

Many couples have affectionate names for each other. The one I hold dear for my wife Julia is "my rose." I started calling her that shortly after we met at a floral shop over 45 years ago. A chance meeting that day at the shop my brother owned led to our first date and two years later we were married. Since it was through flowers that we met, I've kept a tradition of bringing her roses on a regular basis. But one day when I brought her a bunch of fresh roses she responded by saying, "Why did you bring me roses? You know I love pink carnations." I gave a confused laugh and let it go, but it was just a sign of things to come.

I was like most people in wanting to believe the best. When Julia started showing signs of confusion over common things such as where she was at a given time or how to do something that she had done thousands of times before, I chalked it up to aging. As we age our minds become less clear, I thought. But her confusion gradually got worse and she began showing a disinterest in daily activities like housework and cooking; things she previously found some satisfaction in doing. At first, I simply carried the load but it finally sunk in: there was something more going on than just normal aging. We talked about it and decided we should check it out.

I found a neurologist and made an appointment with him. He did a full evaluation that included a memory test, medical history, CAT scan and X-ray. On our follow-up visit he told us what the tests indicated: that Julia had moderate dementia of the Alzheimer's type. By this time, I had seen enough of Julia's behavior to know that something was not right, but I was hoping that it wouldn't be Alzheimer's. It was tough news for both of us to digest.
I then shared this news with the rest of our family and it confirmed what nearly everyone else had also been observing. Our 5 children and a number of grandkids who visited regularly had also noticed some changes in Julia's personality.

For a time, she was stable and went about her daily routine without much trouble. But a turning point came when Julia awoke one night with a sharp pain in her abdomen. We immediately took her to the hospital and found that she had a urinary tract infection, a blood clot in her lung and a leaky vein in her intestine, which was hemorrhaging. After one month in the hospital, the doctor sent her to a nursing home to recover. At the nursing home the effects of Alzheimer's disease became more apparent. In this new and strange environment she became paranoid and was afraid of people.

After one difficult week in the nursing home she was finally allowed to return home and the whole family pitched in to help. We moved our bedroom from upstairs to a downstairs room and made the first floor of our home into a studio apartment so Julia could move around more easily since she now had a regressed gait and suffered from significant memory loss. My son, Tim, a doctor in Madison, Wisconsin helped with the medical side of things and my daughter, Mary Eileen, took a sabbatical from her job and devoted a lot of her time to us.

During this period I began searching for information on Alzheimer's disease so I could better understand what was happening. One particular book that was very helpful was called, The Forgetting : Alzheimer's: Portrait of an Epidemic by David Shenk (see the October 2002 issue of Chicago CAREgiver for a review of this book). In one section of the book it indicated there were stages of Alzheimer's. I had not seen this before. But what I was reading was the exact progression I witnessed in my wife and it started to make more sense. At around the same time, I also attended a 6-week caregiver seminar that focused on Alzheimer's disease, which I found to be very beneficial.

But as Julia was changing, so was I. How could I not? The dreams that we shared for our future had been turned upside down and in the process required both of us to make many adjustments. Two of my biggest challenges have been losing Julia's companionship, along with my freedom. Being her primary caregiver restricts my ability to do many of the things I once did. She has become almost my sole focus in life and it has altered my entire way of living. Yet, I am not bitter about this. In fact, as I have accepted these changes I have become more relaxed and learned to be more realistic in my expectations.

One of the things that I did do for myself is join an Alzheimer's family support group at Resurrection hospital. The loss of my ability to communicate meaningfully with Julia and the passing of several good friends in recent times, made a support group seem appealing. A number of the members of this group had loved ones at the same stage as Julia, so we could all relate well with and support one another in the challenges we faced. I initially went to the group to get my needs met but soon found great satisfaction in supporting other members who were going through tough times also. I felt a relational connection with a number of these people and realized how important outside friendships were to my sanity.

During most of our 45 years together, I was the one who was more quiet and reserved and Julia more verbal and outgoing. But I've had to learn to be more talkative and reach out to her and others. For example, one day I decided to go to a local flower shop to buy flowers for Julia, instead of buying them at the grocery store. As this was one of my few times to be out of the house, I started a conversation with the shop owner, whose name was Barbara. It turns out her father also has Alzheimer's disease. As a result of our common situation, I make a point to stop in frequently and talk. Over time, she has become a great friend to me. I have found that by sharing my story with others, I am able to make new and meaningful friendships.

Another example is when I called our local fire station to inquire about a non-emergency number that I might call should I ever need help with Julia. I was told to stop by a particular station and talk with the battalion chief. We had coffee as I explained my situation to him. He graciously offered their help if I ever needed it. But one of the other firemen, named Barry, overhead our conversation and introduced himself as I was leaving. He showed an interest in my situation and now regularly drops by the house to visit me and I also try to get over to the station to say hello when I am able. He is another new friend I have found because of Julia's illness.

About a year ago our daughter said she thought it was time to get some additional help from a professional caregiver. This seemed like a good idea. So now we have a paid caregiver that comes in to help with Julia's personal care each morning and evening. And one of our adult children stops in every day to also lend a hand. I have never had to ask any of our children to help. These caring hands allow me to get out of the house and take a break from my caregiving responsibilities, which I need on a regular basis.

Julia's personality has completely changed and she no longer is able to hold a conversation with me. I miss her smiles. But I just accept her in her own way. We communicate now by holding hands and that is our only true way to connect. But even though her personality is different, I know that behind the mask of this disease she is still the same person I have known and loved. I think about all that she has meant to me and our five children and how we could never forget all she's done for us.

I've never looked at our wedding vows as a contract but I do feel blessed that I can fulfill my part of those vows now in her time of need - to be there for her in sickness and in health. And even though I now buy pink carnations for her, she is still the one and only person I call "my rose."

Senior care costs vary in each state of the U.S.A. Medicare does not pay for long-term care and this makes it important to research the costs of senior care before you need caregiving services by submitting a request for a senior care plan in your area.

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