Old 08-23-2007, 11:10 AM #1 (permalink)
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Default MND and being single or alone

Since the issue was brought up on another thread, I am wondering whether there are others on these boards who are single or alone and are facing a neurological illness? How are you managing and what plans are you making for the times when you will become unable to function on your own? I am also willing to entertain suggestions from the married types on these boards.

On the one hand, living alone makes it difficult for me to meet my daily needs (cook, clean, etc.). This is becoming more difficult as my disease progresses. Yet, as annmarie says, if married, then one worries about the spouse who will be left behind. In addition, I'm sure the PALS worries about the CALS and the unfairness of the CALS having to shoulder the burden as the PALS becomes further incapacitated. We all agree that having young children and MND is extraordinarily painful. I am faced with that situation and I fear my daughter growing up without my support.
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Old 08-23-2007, 12:25 PM #2 (permalink)
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Hi VMD -

I am a CALS, not PALS. My friend lived alone in California and managed, even worked, for a couple of years. Eventually, my husband and I made the decision to have her live with us. She has been here over 2 1/2 years and we are fine - she is a pleasure.

I think you will either need to hire help over time, or live with someone. I understand that people have set up networks of care within their churches and communities, but I have no experience with that. My biggest concerns are your falling, and eventually help at night.

My friend is the most independent person I know, but we respect her independence in our home, now her home, also.

Sometimes things change- despite our best plans. Maybe your network includes people who would care for you. Trust in those you love. Pat is not a burden on us - I have fun with her every day.

Pat sold her home and lives with us at no cost. She used the proceeds from her home sale to purchase adaptive devices.

I know that the thought of having care from your friends feels unthinkable - but from the perspective of a caregiver - I have a very good life, and do not feel burdened. I have a sense of relief that my beloved friend is in a safe place, and that we have this precious time together. My husband is also very helpful - he thinks the tree of us make a very nice family. We have no children, and she has no family at all - but we are doing just fine.

Have faith - somewhere in your network I believe you have touched someone enough to be brought into their lives. My experience is that the PALS has to come to grips with dependency - a very difficult journey.

Other than my experience as a caregiver - I do not have any knowledge to offer - I am not sure how you could stay alone - you will need assistance.

Good luck!

Beth

PS - I have heard of Neuro patients who live alone sharing their home with a caregiver - the patient offers free rent, food, furnishings, etc, and the helper helps at night and on weekends. Does shopping, cleaning, transporting et. Sometimes they are students, sometimes recently divorced women, sometimes singles who are willing to do this. They helpers sometimes work during the day for cash, while the patient pays in offering a place to live, and possibly a vehicle.
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Old 08-23-2007, 02:07 PM #3 (permalink)
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Beth:

Thank you for the suggestions. Yes, I remember reading about your caring for your friend. You are an excellent example of Christian charity.
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Old 08-23-2007, 02:17 PM #4 (permalink)
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annmarie:

Your sister sounds like a God-send.
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Old 08-23-2007, 04:21 PM #5 (permalink)
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Well I certainly could have used her yesterday. I woke up at 6:30 am and did not have an opportunity to rest until 8 PM. By this time I was completely exhausted and wondered how I will survive this semester at school. I don't think I will be able to make it through the semester. It's a matter of taking life for granted, but I recall planning for the next year or two, while now I think in terms of weeks.

I think of you Leslie and wonder how you make it with having to also be responsible for the care of your children. I am with you Leslie, even though it's only in spirit. I know you also have tremendous fatigue problems. Of course, in your case, it's not ALS according to the medical people, but this is probably only a small comfort to you.
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Old 08-23-2007, 06:54 PM #6 (permalink)
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Get intouch with your insurance co. Tell them the problem you have and need ot and pt in the house because you are unable to get around. That entitles you to an aid who will come two to three times a week and help you Also ALS will give you up to 1500 for a aid to help you per year Also call you local hospital first they will sent up in house therepy and they will call you ins. co Good Luck Pat
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Old 08-24-2007, 11:36 AM #7 (permalink)
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Pat:

Thank you for the suggestions. I don't think the insurance companies will help without a diagnosis, will they? My plan is to go to an ALS specialist sometime in December. By then, the progression will become apparent and considering my symptoms, I would be very surprised if the examination was normal. Given the appearance of my tongue, I would think an ENT would be able to diagnose me as of today. On the other hand, I would like to work as long as possible in order to minimize the amount of disability payments I would draw from my pension. The more I draw, the less the amount available for my daughter when there is a final settlement in case of death. It's the old between a rock and a hard place issue for me.

Leslie:

Like you, I don't see anyone else taking care of me in the present situation. In addition, I feel as though I would not want to inrefere in the lives of my relatives. After all, they also will have their problems. I do know a woman, who for some unknown reason has taken a liking to me. While she doesn't know what is actually wrong with me, I have told her that I could progress to being in a physical vegetative state. While she has offered to take care of me, I can't see burdening her this way. She is much younger than I am and has 2 children. Interestingly, she is in nursing school and will have her nursing degree in one year. We see each other as friends and spend time together talking, but considering my physical state and the energy required for a relationship, I just don't see it.
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Old 08-24-2007, 12:22 PM #8 (permalink)
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perhaps you would be a good candidate for this 10 bed ALS place? This should be for people like you. Why don't you ask the guy that is designing it?
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Old 08-24-2007, 12:43 PM #9 (permalink)
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jamie:

This could be an option, but I wonder about the cost. Also, they would have to build one near where I live because I cannot relocate without my daughter. She lives with my ex-wife.
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Old 08-27-2007, 08:45 AM #10 (permalink)
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I think it is absolutely terrible that insurance won't help with what they call "custodial care." People don't need custodial care unless they have a medical issue that makes caring for themselves impossible. It is so expensive. My father is always trying to cut corners for cost, and it just makes his condition worse. I understand that the people who provide this kind of care are definitely worth the money it costs, but it seems so unfair that the insurance won't help. He saves a lot of money having me come help him every single day, but it is exhausting, and I have 2 jobs and a family myself. Unfortunately, I happen to provide the best care, maybe since I do it so regularly that I know what I'm doing.
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Old 08-27-2007, 10:50 AM #11 (permalink)
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Bless you for being so kind.
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Old 08-27-2007, 06:55 PM #12 (permalink)
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I gave up trying to solve the "what if" problem weeks ago. According to my brother-in-law, I am not exactly married to Forence Nightengale. I have watched my hubby sit on the sofa for hours, ignoring the dog waiting by the door. If I ask for a glass of water he sighs and acts like I am asking him to climb a mountain. I honestly don't know what I'll do. Maybe he will rise to the occasion. Maybe the State will offer help. Maybe I'll go to a nursing home. Maybe I will be OK. I wish i had a crystal ball! Cindy
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