Caregiving Special Focus

Solutions To Your Caregiving Situations Throughout Your Caregiving Years

When Caregiving Causes Debt Caring for the Two Most Important Women in his Life We asked Patrick, who cares for his wife and his mother, to share his story. Our questions and his answers follow. Caregiving: You're experiencing a double-whammy--both your mom and your wife currently reside in assisted living facilities. Can you tell us about their situations? How long have you been caring for them? Patrick: My wife had her first signs of Alzheimer's five years ago at the age of 61 when she began to speak repetitively and refused to believe it. Her father and his two sisters also had similar problems but they were in their late 70s when it emerged. And she has two older sisters who are in normal mental health. Since this began shortly after we moved from one coast to the other, we had no chance to develop new friendships. Then when she learned she was no longer allowed to drive, she was devastated as she came to realize her independence was eroding and there was nothing she could do about it. She struggled to make friends but her inability to move on to new conversations and instead repeating herself made this impossible and no one would return her calls. And for someone who had a large group of friends in her past life, this affected her the most. About four months ago, she was diagnosed by her neurologist as being in the advanced stages. For the past six months, because she is in a care facility, my care for my wife has been financial mostly though I still take her to all her five doctors for appointments. My mother only recently (last month) had a stroke at age 94 and had been in reasonably good health caring for herself in a senior living facility. Only recently has her care been a financial one. Caregiving: How did you choose the facilities in which they live? Patrick: I began taking my wife to day care in January, 2006. She seemed to very much enjoy the 8 hours she spent being entertained there. Early this year, she began to cry on weekends as day care was not offered then. She would cry for hours and say I know what's wrong with me. The day care place was also a 56-bed assisted living facility and since she had become familiar with most of the staff, it seemed like the best choice. My view is that she is happier there than at our house likely because of all the people there and how friendly all the staff are as contrasted with our place where I'm the only other person. Plus she was always expecting me to be her full-time entertainment director and in that capacity, I felt totally inadequate and this is part of the care offered there. My mother lives in the same town where she has spent her entire 94 years and since I have a sister nearby, as well as my mother's insistence on being cared for by her doctor of many years, she is moving into the only care facility within 65 miles. It remains to be seen whether this will work out for her. Caregiving: Finances are a huge worry for you. What's your greatest worry specific to the finances? Patrick: Since my wife and I are only 66 and the annual costs for her care is $78,000 now while she is only evaluated at care level 3 (out of 5), she will eventually slip into level 4 and then 5 in which the costs will exceed $100,000. Add inflation as well as her young age, and there is no way we'll be able to handle these expenses 10, 20, or perhaps 30 years from now. And, as I've been advised by an Elder Law Attorney, Medicare provides nothing for this type of care, only for skilled nursing care. (Editor's Note: Medicare pays for short-term care in a skilled nursing facility after a qualify hospital stay and as long as a patient qualifies for skilled care. In order for Patrick's wife to be eligible for Medicaid, she would have to reside in a facility that accepts Medicaid; most assisted living facilities do not. For more information about Medicare and Medicaid, read Resources to Help You.) With assisted living, a nurse on staff part-time provides medication delivery. My wife is not ready for skilled nursing in which people are often confined to their room and receive no entertainment and I'm sure she could not be admitted at this time even if I felt otherwise which I do not. My mother's expenses at least have some closer probability of finality given her age but she has proved to be extremely resilient having had triple bypass surgery 12 years ago and, God willing, could live many more years. Caregiving: What are your options going forward? What do you wish your options were? Patrick: After much thought this year, I do not believe there are any options. If wishes could be granted, I would like our lives to be as they were prior to the turn of the century. Alternatively, I wish I could get on with my life though certainly not at the expense of either my wife's nor my mother's lives. Caregiving: How do you stay sane under such enormous pressure? Have you met other family caregivers in similar situations?  Patrick: I try to keep myself busy during the day by going to the gym, volunteering in a number of activities, and seeing my three local grandchildren a couple times a week, as they are in school. I don't go out to restaurants anymore as eating alone and seeing other couples laughing and conversing is difficult to handle. When my wife lived at home, her recent incontinence made it difficult for us when we were out as she would stand up and say loudly someone made her all wet. And most public restrooms are multi-occupant so it was impossible for us to both walk into a restroom so I could clean and change her with fresh clothing. My most difficult times are from 5 p.m. until 9 a.m. every day, a span of 16 hours of loneliness with no one to talk with, no one to share the day's experiences with – just silence in the house. What I really long for is adult companionship. It's not getting easier as I realize this will likely be my state in life for many, many years to come. Surfing the web, I discovered that men who were previously attached (widowed, divorced, separated, etc.) have their live span cut by up to five years unless they become attached again. Apparently this is not true of many women as some may never become attached again and are able to move on contentedly. In my quest to find other men as potential friends, I find this to be true. They are all attached to a first, second, etc. wife. In other words, they don't stay detached. This is also borne out by the fact that by age 70 (my age in a few years), there is only one unattached male for every 10 unattached females. Further, it's very difficult to break into a group of couples and become friends with them unless you also have a spouse/girl companion. A guy I used to have contact with for many years, even though he moved away long ago, had a wife who developed cancer three years ago. We talked often about our situations as we both had spouses who were slipping away. After his wife died just six months later, he called often and grieved about it. Then about six months later, I lost contact for awhile. Then recently he called to say he had gotten back to dating and was currently seeing three women. He said he never thought he could be this happy again and felt like living again. Then he said he felt very sorry for me as my situation prevents me for years to come from being able to move on with my life and drive the loneliness out. I guess because we have little in common any longer, he is not returning my calls. A psychologist who spoke at a seminar I attended last year said men in my situation need companionship to prevent their lives from being shortened and should even consider bringing a girlfriend into the house even while the spouse is still living there. The Alzheimer's patient will come to view this woman as her friend in time as well. The doctor said a person should not feel guilt about this and that no one would condemn him, though it's usually difficult to gain acceptance from the children. At a male caregivers group I found, I learned there were a number of men who had done this and now lived alone with their friend ever since their spouses moved into a care facility. Others whose wives were living away were seeing other women and traveling on vacations with them. My religion is too much a part of me and church elders confirm such behavior is never condoned. The psychologist was of a different faith and said her god understands and would condone. My daughter says I should advertise a room for rent by another man so I'd have company. I would only do such a thing if he were a friend. I just don't know--it's going to be more of the same for me far into the future. Caregiving: What advice or insights can you offer to other family caregivers who worry about the finances? Patrick: If possible, make sure many other family members live in the same house so that care and entertainment can be shared among many and with little financial burden. Also, this way everyone has some time away from it all to get respite. I cannot think of any alternative. The problem with this solution, of course, is that by the time this disease hits a family, only the spouses are still living in the house. Having to instead hire others to perform this function will cost as much as assisted living in an Alzheimer's facility. About Patrick: Patrick is 66-years-old with two children and six grandchildren and has a masters in electrical engineering. He enjoys good health, although has been recently diagnosed with high-blood pressure. He and his doctor are working to control it. Index of Articles Caring for Two Most Important Women In His Life Surviving to Find a New Life The Choices Sometimes Mean a Financial Hardship How I Survived My Dark Days Resources to Help Your Care Recipient Resources to Help You Caregiving Forum: Speak Out About Our Stories and Your Financial Worries Tell a friend about this article:

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