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Let me try this again!

Discussion in 'I have dementia' started by Jaffy, Aug 16, 2015.

  1. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    Ohio USA
    Living alone:

    What happens when sundowners attacks and there is NO ONE to keep you from walking off into the sunset?

    What about remembering to take meds, eat meals, etc.

    Remembering to try something besides staring into space and rocking?


    What happens when there is no one even if I know feel that :no one is of no help and is more of an agitation at least he is here? He has improved to remind me of some things but He wants out of the responsibility of me when I am bad off because it BOTHERS HIM! Guess what it is doing to me!!!!
  2. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    you sound really upset jaffy. I don't know that I can help but I couldn't read your distress and not comment.

    Could you get him to go with you to the doctor as maybe he needs some help. I am sure sundowning is a terrible thing to go through, I have seen my mum with it often. It was very difficult to know what to do to help her with it, we just used to have to wait until it passed.

    Could you come to an agreement with your husband about what you would like him to do?
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Jaffy

    Sometimes it has to be faced that not everyone is a natural carer and some people just cannot cope.

    I know if our situation had been reversed, with the best will in the world, my husband would not have been able to care for me. He was always anxious if I was ill, even in the years before dementia, especially as he was getting older.

    In our early years he was good but still very anxious. It was his nature.

    I think if I had dementia or any other serious illness and knew I couldn`t depend on my second half to care for me, I would try to find an alternative while I was still able.

    I had a taster of this when I was losing my sight and know how frightening it is so I do have some idea what you are experiencing.

    I`m really sorry you feel so let down.
  4. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    Ohio USA
    Thank you for your kindness. Yes, waiting until sundowners passes is all there really is, while every other thing is tried sometimes changing every 5 minutes to FIND something that works. But who would help me try something different, etc.? He has been to the doctor with me, altho not dx'd my doctor says that us being apart is the only thing that will help me, in many ways and even help hubby too. So I'm sure the doc HAS dx'd him to a degree. Our plan (and hubby is against it and for it! that is how we have lived for so many years!) is him have a camper and me have a camper and when I'M not so bad off we can be together! Our grandson and wife will buy our very inexpensive home. He will take me a drive and that helps more than anything at the moment but, as his best friend told me yesterday = that is because HE likes to take drives and only goes and even eats where HE wants! I said "Yes, I didn't know you knew that!"
  5. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    Ohio USA
    Thank you, I (and our 4 children) can't think of any other way but to separate. I can live alone (when not having sundowners). He can't! He has to have CONSTANT contact with someone even by phone. I hate to do this to the kids and neighbors we will have! True he and oldest dau are not caretakers. Youngest dau is and takes care of every teen, senior adult, animal that crosses her path! Oldest son will welcome us with open arms but still do his own thing and we would be on our own in his home; 2nd son will LET us move in but the restrictions will be similar to living here! We own lovely land out in country, and will live there (separately/together), if it doesn't work, we will move 1 or 2 campers, elsewhere until we need more care! That is the present plan. So I guess i will just HAVE to get over dementia and sundowners! But please let me live alone, I think even my own careing days have fled! I can't forget the memories!
  6. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    Ohio USA
    So, sorry, I am causing you all concern. I am not a worrier Hubby is. But I like to know the worst then everything else is better, than the worst would be. But I know the complaints that I listed are true and don't know what to do, but what will be will be, thank you all. Jaffy
  7. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Oh my goodness jaffy - I do hope your children can sort this out so that both you and your hubby are OK
  8. Barry

    Barry Registered User

    Oct 14, 2006

    Oh Dear Jaffy
    I wish I knew what to say to help you, I can give you some tips for Sun-downing but the other problems are something that I've not had to deal with
    Sending you my deepest support

    “Some Sundowning Tips to ease the anxiety”​

    "Sundowning" is a state of increased agitation, activity and negative behaviors, which can happen late in the day through the evening hours. It used to be thought that Sundowning was caused by the lowering light and shorter days. However, research now indicates that being overly tired may have more to do with Sundowning. Here are some suggestions on how to minimize the negative behaviors associated with Sundowning:

    Make sure that your Loved One is well rested: I know that this is easier said than done. It does help though if you can get your Loved One to take a nap just before their normal period of Sundowning. If they cannot or will not nap, an hour quiet time (reduced stimulation and activity) will work. Turn off the TV, turn on some soft music and then sit and do a quiet activity such as painting or sketching. Sit and talk quietly with you loved one for an hour as it can help to make them relaxed.

    Limit outings and activities to the morning hours: Generally the individual with Alzheimer’s disease is better able to tolerate outings, activities and increased stimulus during the earlier part of the day. Plan your trips to the grocery store, involvement with kids, visits to day care and so forth during the earlier part of the day. This should be followed with a time of decreased stimulus and quiet time to allow your Loved One to wind down and relax.

    Decrease the length and amount of stimulus: Even during the earlier part of the day the individual with Alzheimer’s disease can only tolerate so much stimulation and commotion. Take steps to eliminate over-stimulation such as television, children, and any noise making item, quick movements and many things going on at one time. Sometimes excessive stimulation cannot be avoided. When that happens, allow your Loved One to have a quiet area to retreat to.

    Identify and minimize physical discomfort: Other types of physical discomfort can also play a part in Sundowning. Hunger; being wet or soiled, feeling cold/hot and other sources of discomfort can increase agitation, especially in the late afternoon and early evening. Light snacking during the day can be helpful. Apples and other fruits can help replace lost energy – even if your Loved One is pacing back and forth, that does not mean they have an endless supply of energy. Make sure that your Loved One’s personal needs are attended to and that the climate is at a comfortable level.

    Identify and treat medical ailments: Many ailments can contribute to Sundowning and agitation. Arthritis can be one of the most common causes. An over-the-counter painkiller as recommended by your Loved One’s physician before the time of Sundowning might be of great benefit. Urinary Tract Infections, flu / colds, asthma, allergies and other conditions are all medical ailments that can contribute to Sundowning. It is always a good idea that when your Loved One first begins to exhibit Sundowning or when Sundowning becomes common to take them to the doctor to make sure that there is nothing ailing them.

    Be observant to possible causes: Many times there are triggers to agitation leading to Sundowning. I now find that the noise from a hand phone tone can affect me more when I’m Sundowning so It’s best to set the phone to just a vibrate mode. Provide your children with a separate area to play as quietly as possible. Mirrors can also become a trigger as well due to light reflections. Watching to see what is going on, what events are happening and who is present prior to Sundowning can help reveal some causes (and solutions).

    Sometimes no matter what we do Sundowning will happen. If we cannot prevent it we can help lessen it or at least make it less unpleasant for our Loved Ones and those around them.

    Provide a private "time out" space for your Loved One:

    Keep the house as quiet as possible to avoid aggressive Sundowning episodes, turn off unneeded lights, turn off the TV/radios and either go to a quiet corner or go and sit outside for a moment but always be close at hand.

    Check with the doctor: If Sundowning is particularly troublesome; you may need some extra help with prescription medication. Talk with the doctor to let him know of the behaviors, time of day and how you’re Loved One is behaving before Sundowning. He may be able to help you by prescribing a medication to help ease the symptoms.

    Medication is a last resort and may take several attempts with different drugs and doses to find the right one that will work for your Loved One.
    If medication does not help, do not become discouraged, relay the information to the doctor and he may either adjust the dosing or change the medication.

    Keep things simple: Keep the surroundings as simple as possible. Be sure your Loved One’s walking paths are clear from clutter and obstacles. Low furniture such as coffee tables and footstools can make it difficult for your Loved One and become a source of frustration. Keep knickknacks to a minimum and the tops of tables, television shelves and other surfaces as clear as possible.

    Mirrors and pictures can often become unfriendly visitors that the individual with Alzheimer’s disease cannot understand. Complicated, noisy appliances are also frustrating to them.

    Avoid changing things once you have things simplified since changes of any kind can be extremely frustrating for someone who has dementia.
  9. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    Ohio USA
    Thank you all for your concern. And Barry as usual, you are right on. THEN around 9:30pm last night IT hit Harder than ever! I told Hubby to go read the paper on my door, he did and it helped, meaning he shut up with all HIS worries and complaints about Me! Both of us having Parkinsons and dementia is bad enough - just have to be thankful that he doesn't have Sundowners, too. One of us is TOO MUCH! You are all the greatest. Jaffy
  10. Barry

    Barry Registered User

    Oct 14, 2006
    Hi Jaffy
    I'm pleased that it helped! ;);) Stay strong of mind and spirit

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