A country-dwelling newcomer

Discussion in 'ARCHIVE FORUM: Support discussions' started by Sheepish Man, Oct 30, 2007.

  1. Sheepish Man

    Sheepish Man Registered User

    Oct 21, 2007
    2
    Colorado, U.S.A.
    Hello to All,
    I’m new. I’ve read the old posts and, as many other newcomers have said, I’ve learned enormously. Thank you all, including the fine moderators. I apologize for the length of this first posting.

    My wife is in an early stage of what is almost certainly a vascular dementia. (Most of you cope with far more advanced problems.) Her short- and long-term memory are fine. She goes downhill in a step-wise way. She is also early-onset: We noticed problems two years ago, when she was 61; some must have been present years earlier. She took early retirement–at age 55–from a fine career as a professor of chemistry in a nearby college. Our excellent, sympathetic GP had been one of her students.

    Her main symptoms are–
    --Near total loss of math and money skills. This scientist can no longer write a check or count her pills. She still cooks fairly well (though I’m taking over more and more), but can’t time multiple dishes. She often can’t read a clock. She loves tv sports, but often can’t follow the score or other numbers.
    –Spatial problems, galore and increasing. She can’t fold a paper sack. She wears shirts backward. We stopped her driving the day she moved one lane too many, in front of on-coming cars.
    –Balance and walking problems. She takes slow baby steps, and her posture is terrible–she moves and carries herself like a woman of 85.
    –Increasing stammering and also loss of words. (Yet her vocabulary remains large and often witty.)
    –Increasing times of confusion or inconsistency; great difficulty in making up her mind.
    --She does less and less automatically, such as reaching for common kitchen tools.
    –Increasing clumsiness. She used to be our “handyman,” but now can scarcely use a can opener.

    Her behavior wobbles by the hour, as well as over longer stretches. Just now she’s in a passive phase: She accepts my help easily and often requests it. At other times, all the anger, pain and frustration of a once highly independent, professional woman boil below the surface or burst out.

    Her dream was to retire to a farm, and we’ve done that–we live on 40 acres in a fairly remote part of Colorado, U.S. Of course “her” farm is now mainly mine. My forum name doesn’t reflect my personality, but refers to the 33 woolly beasts (plus 2 llamas, 2 horses and 40 ducks) that wander our pastures.

    While I’ll be grateful for comments on anything above, I’ll close with 2 specific problems.

    1. Are any of you true rural dwellers, who can share thoughts, musings or advice on the special rural problems? For us, these range from my wife’s difficulty in closing gates to the puzzle–sometime down the road–of how to make use of (say) a day-care center when we live 17 miles from town. I should mention that for now I can still safely leave her home for hours when I choose to run town errands alone.

    2. I would greatly appreciate all thoughts, rules of thumb, etc. regarding the border between optimism and denial, and how you’ve dealt with it. On the whole, her optimism seems a blessing. Yet it also means that she only sometimes faces or grasps the headaches of continuing to farm and the burdens she has dumped on me: Wheedling her to reduce the flock from 50 sheep to the current 33 took real effort. There are times when she can’t or won’t see me as her caregiver, or face how much she needs one.

    I want her to participate--as much as she still can and as long as she still can--in major decisions regarding her own life and future. But her frequent refusal or inability to face her condition and the likely future forces me to be more of the boss than I wish to be, and to do more behind her back than I wish to.

    Thank you for your patience.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,731
    Kent
    Dear Sheepish Man, welcome to TP.

    I`m sorry I can`t help you with your two specific questions, a] we are not rural dwellers and , b] if you have browsed through posts you will have seen how everyone, with the same or similar conditions, is different.

    I think your comment , quoted above, is common to all carers. As far as I`m concerned, my life is played by ear. There are no rules, there is no order and what works at this moment, might be a disaster in half an hour.

    I`m sorry I can`t be more constructive, there may be others who will be able to provide more helpful information. But I`m pleased you have found TP and hope you find support, information and frienship here.

    Take care xx
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    Hi sheepish and welcome to Talking Point.

    As you're probably aware most of our members are from the UK so as a small island with a large population truly rural is somewhat unusual. Which is not to say that many wouldn't like to be within 17 miles of a day care place - you don't have to be physcially isolated to be practically isolated, sadly. We do have an australian contingent, one or two of whom have a rather more rural existance.

    I think though, although your problems are going to be compounded by the distances involved, the problems that everyone faces are very similar. It's all about managing a situation that is unmanageable; persuading, sometimes by deception, people to do things that they don't want to do; protecting them from themselves and their environment.

    One thing I would be concerned about, particularly as winter comes up. You say that you feel she is OK to be left for fairly long periods of time. I have to say that I would be very wary about this - when you live a long way from anyone else, there is no one to notice if she suddenly takes it into her head to wander off. Have you considered getting some form of tracking device for her? In the temperatures that are common in your area during the winter, even 10 minutes outside without adequate clothing could be fatal. I'm sorry if I'm making you worry unnecessarily, but the first time she does something like that could be the last time.

    Best wishes
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Welcome from me too!

    Well, rural is a term that can be very relative.

    In the US distances are of course much greater, but I consider that at the time I was caring for my Jan at home [she was at that time from 51-60 years of age, with mixed dementia including vascular], we were rural.

    We were only 38 miles from the centre of London, and 2 miles from the villages at either end of our single track road. For someone with increasing dementia, I don't think for them it matters whether it is 2 miles, 200 miles or 2000 miles to the nearest town. [see attached photograph where X marks the house]

    For someone trying desperately to hold a shared life together it matters a heap.

    There are benefits to being rural. There may few dangers from traffic near the house, smaller danger of social problems in the streets. In sundowning episodes I would not have wanted my Jan in the main drag of the place I live now.

    But of course, access to doctors, day centres, pharmacies etc all depend on transport, and a rural location may mean that any of these are many miles away, or simply not accessible.

    Jennifer is so right about tracking devices. Jan several times threatened to strip off and run out into the road, or the nearby woods, but even clothed, in less temperate places than the UK it would be a worry.

    My best advice is for you to approach each day with as much strength and enthusiasm and love as you can. If strange behaviours happen, go with the flow.

    Record the time in a diary - over time it may prove useful in helping you judge the speed this thing moves at. Later still you may look at it in wonderment of how on earth you managed, and it will show you did as good a job as is humanly possible.

    If things start to get beyond your capabilities to understand, come here to TP and speak to friends, as well as contacting others locally in the US.

    Good luck, and sorry I can't be of more practical health.

    By the way, whereabouts approximately in Colorado? I was once sick as a dog through altitude near Boulder. [well, the bottomless coffee pot at breakfast, followed by a king-size strawberry thickshake didn't help, but it was probably the altitude..;) ]
     

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  5. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    I lived in Spain on a small farm which was quite a distance from everyone and everything when my husband first showed signs of impending dementia. There was just too much for me to do by myself and I couldn't manage. I didn't have the physical strength. We sold up and moved to the edge of a town.

    I never knew whether I had made the right decision or not as we both missed our animals very much and did feel 'hemmed in'. We never really got used to having neighbours close by and to this day, I look back with nostalgia to the time when I could have my music on full blast out in the open without bothering another soul. Also I do think that the move pushed the dementia that little bit further down the line.

    A few years later we had to move not just from country to town, but from country to country as I felt it best to move back to the UK. No matter where you live, I think that the disease has an isolating effect. You can feel quite alone in the middle of a crowd. Having neighbours close by doesn't always mean that help or assistance is also close by! Take good care of yourself and your poor partner. I'll be thinking of you.
    xxTinaT

    xxTinaT
     
  6. Sheepish Man

    Sheepish Man Registered User

    Oct 21, 2007
    2
    Colorado, U.S.A.
    My thanks to all four of you who have so far replied. I hope more will do so. Please remember that the second problem I raised has nothing to do with rural life: I would appreciate all thoughts on how you have dealt with (pardon the trite word:) denial in those in the earlier stages who might have more say in their own lives if they faced their dilemma more squarely.

    Now replies:
    Though I had already thought of tracking devices, I thank Jennifer and Brucie for the nudge on that one. It’s an important idea. Please let me know if there are devices you recommend. Or steer me to other posts that have discussed same.

    I clearly misled some who replied, and likely others who read my post, by speaking of “a remote part of Colorado.” I should have said “we are distant from large cities.” We do have neighbors, including some directly across the road. I don’t know the UK equivalent of “subdivision,” but we all cherish our farm neighborhood because it’s one of the few nearby that hasn’t been shattered into tiny “ranchettes.” Should she start wandering, my spouse is likelier to be hit by a vehicle than to vanish.

    Brucie, your question made me grin. I know that even today there are still remote areas near Boulder, and your picture shows how true that was some years ago. Even so, Boulder itself is Colorado’s main university town and virtually a suburb of Denver. So overall you are speaking of our high density population “corridor,” which sprawls along in the eastern shadow of the Rockies.

    We live some 320 miles from there–a 6-hour drive. We’re in southwestern Colorado. In the U.S., our region is sometimes called “Four Corners,” because it surrounds the only spot where 4 states touch. If you wish to go atlas sleuthing, our nearest small city is Durango, Colorado. We’re close to Mesa Verde National Park, which protects “ancient” cliff dwellings that are in fact no older than some of your cathedrals. We are closer to Albuquerque and Santa Fe, New Mexico than to Denver.

    Tina, I want to thank you especially for your moving reply. Surely you are right in saying that all of us–wherever we dwell–are “isolated.”
     
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    Sheepish Man - I'm moving your post into the main support forum because I think you might get more responses there.

    Tracking devices are unfortunately very country specific and all the discussions we have had are related specifically to the UK.

    However, verizon offers several cell phones with what they call chaperone which allows you track someone from another phone or a computer. You can also set up a zone so that you're notified if the phone leaves a specific area. However, I'm not sure if this is using GPS (good) or the cell phone towers (not so good), nor whetehr it is available in your area. It is, in any case, just a suggestion or a starting point.
     
  8. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Sheepish Man,
    My husband was diagnoised with A.D. at the age of 58. I had already experience of A.D. Peter at the time of diagnoises was actually relief they knew what was wrong with him. Keeping them safe, warm, yes if you could get a tracking system it is a good idea. As everyone is an individual it is so difficult to give specific advice. Here on talking Point it is a god send that we can share and perhaps find a different way with dealing with situations. Is it possible for a Carer to come to your home? I know that Day Centres are good so they can make friends and activities. I just wish you the very best because when we are caring for our loved ones that is all we want. Best Wishes. Christine
     
  9. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    #9 blue sea, Nov 1, 2007
    Last edited: Nov 1, 2007
    Hello Sheepish man and welcome to TP, where I'm sure you will find considerable support and help.
    My own experiences only link in a few ways to your own ( I am a city dweller in England and my experience of vascular dementia is through my father and aunt, both of whom were very elderly). I am contributing to this thread,however, because your post struck some chords. My father, of the second world war generation and from a working class background, had only limited formal education, but was very intelligent, well read and articulate. As the dementia developed in the early stages he managed to compensate for some of the losses through linguistic 'tricks' and other strategies. This clouded for some time the true degree of his problems. However as the illness progesssed of course his ability to do this diminished. My own way of coping ( and we each find our individual, personal route) was to continue to include him as much as possible in terms of decisions and choices, but I gradually adapated my language, as you would with a young child, and reduced questions / choices (when he was unable to comprehend them), into a sharing of what was happening. Even when he clearly could no longer understand, I still told him of important events in our lives, in a simple, clear, calm and short way. That way I felt that if there were any residual understanding going on - at a level he couldn't show, at least I had given him that information. As an example of this, when I told him that our daughter, his grandaughter, had qualified as a solicitor and showed him the newspaper cutting, a smile came to his face and tears to his eyes. I know that by this stage he did not comprehend what we were pleased about, but he knew something good had happened and I felt he was able at some level to share in the family joy. He kept the newspaper cutting as a treasured possession, even though he really didn't know what it was about. Sometimes I felt I told him things to help me more than him, but this is part of your survival route as a carer. As to the optimism / denial - I feel that one of the very few blessings of dementia as an illness is that as it progresses the sufferer is less and less aware of their condition. Gradually you reach the stage where it becomes cruel (and futile) to try to force the person into an acceptance of your reality. Their reality is different from yours, and is as strong. You just cannot logically convince them that their behaviour is odd or dangerous etc. I think that as the illness progresses you as a carer gradually adjust to this, but it is only natural that in the early stages you strive to bring them back into your world. My best advice would be to accept the flow of change - you cannot delay or restrict its progression. Love the person for who they are, not just who they were. Bruce's advice to keep a diary is very good. Recording your reflections could be a way of shaping the experience you are going through and may help you to feel some control of what is happening.
    Sorry if this is rather a long post!
    Blue sea
     
  10. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
     

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