Discussion in 'Fibromyalgia Main Forum' started by rwins, Sep 6, 2006.

  1. rwins

    rwins New Member

    I need to find someone who is in the same spot I find myself. My husband has AD and I need someone who is going through the same problems. Maybe we could share ideas. I live in a very rural area so can't go to regular support group and I don't know anyone else with the disease. Help.
  2. ruby711

    ruby711 New Member


    It can be very difficult to deal with depending on how it affects personality. My mom has it and I did go to a support group until I cud no longer attend due to cfs.
    It is generally adviseable to see a specialist along with a primary care doc who is a geriatric specialist.
    You may need to shop around for a specialist because from my experience some grossly underestimate the problem. It seems to be a common error in medicine perhaps because of the very limited time spent with the patient.
    I am not on the net everyday but I will try to respond if I see any questions or concerns expressed by you.
  3. rwins

    rwins New Member

    I have asked about special tests but the doctor said that there is no doubt about the Alzheimers diagnosis. I just need to find someone who is dealing with someone in this stage of the desease. At this point, he is able to function very well to do outside work around the house and manage his personal care.
    There can be no meaningful conversation as he can't rememb er the subject being talked about, he can't go to the store by himself or do anything that requires concentration. His memory is very selective, past years are more clear than today. He can't describe anything as descriptive words are totally forgotten. He has paranoid thoughts about some posessions and knows that someone is trying to steal them.
    Do any of these behaviors sound familiar?
  4. rwins

    rwins New Member

    I just knew someone out there was or had been in my shoes. Did you discuss the Alzheimers with your mom? As far as meds are concerned, my husband has tried two different ones and could not tolerate either one. He is about to have knee surgery and I am concerned about how this hospital stay is going to affect his awareness. He will be 84 next week and at 81 I am the sole caregiver. We live by ourselves and manage very well. Sons don't live very close but keep close tabs on us.
  5. Kayleen

    Kayleen New Member

    My mother has AD. I understand completely. My mother can't remember anything short term. Just recently she doesn't know my dad. She keeps calling me and telling me she has company. One of my dads relatives. It's always my dad. She calls her brother and sister and tells them she doesn't see anyone for weeks. My mom and dad are actually divorced. Four years ago my mother was locking my dad in the basement, hitting him and even tried to poison him. She ended up in the psych unit(one week) and was diagnosed as paranoid pscisophrinic (sp?). She got on medication but was still obsessed with my dad she wouldn't leave him alone. He ended up living in an apartment but takes care of her during the day. At Easter time she ended up in the hospital and had to have her gall bladder out. This last month she has really gotten bad with her short term memory. We are having her tested in a few weeks. The scary thing is she still has her keys. It is so disheartening to have someone you love be so confused. My dad will leave her at 5pm and at 5:30 she calls me and says she hasn't seen him for weeks. Wants to know where he lives, his phone number and why they got divorced. You have a long road ahead of you I'm afraid. My thoughts and prayers will be with you.
  6. rwins

    rwins New Member

    Thanks for sharing your mother's alzheimers problems with me. I know things will get worse but I needed to know someone who understands how difficult it is to keep ones'sanity. For instance, last night R. came out of the bedroom at 9 p.m. all ready to go to the hospital. I explained, for the thousandth time, that he doesn't go until Wednesday and it was only Sunday night, not Monday morning. He just laid on the bed all clothed until sometime in the night he got undressed and into bed. This kind of thing happens all the time and right now we laugh about things a lot because I know that the future will bring many situations which laughter won't help.
  7. Kayleen

    Kayleen New Member

    I'm sure it is very difficult for you. My dad says my mom will start talking to him like he's someone else. He'll ask her "well who do you think I am?"...she'll laugh and say oh I guess you are Dick. She has been calling us kids a lot and telling us she has had company. Some of dads relatives she says. It's my dad.

    Do you have FM or CFS? If so that has to be very wearing on you. I know in my case I'm tired and worn out after working all day and then I have to deal with mom not remembering that's she's divorced and she's looking for my dad.

    I tried to make her an appointment with her doctor. She called and cancelled it. We are meeting with a Dementia Team in October. I hope they can help.

  8. happycanuk

    happycanuk New Member

    Hi. I know exactly where you are coming from. My Mom had Alzheimers Disease and it was the most devasting time of my life. I can deal with others that have it, but that one was just too close. Since she was also diabetic and had Angina, she was admitted into a nursing home, where she was well looked after. It just broke my heart to see this once active lady, become so terribly broken.

    I know how it is to try to carry on a conversation, as it is very one sided. My hubby's cousin is now in the throws of this, and it has been going on for years. At least my Mom was 78 when it was apparent she needed to be in a home, and she passed away just before her 82 birthday.

    I don't think there are any meds that help a lot, only for a very short time. They are making progress however, so prayers never hurt.
  9. victoria

    victoria New Member

    There is also a messageboard at this site for Alzheimers - just click on the 'messageboards' up above... it is very helpful altho I've not posted much myself, but got a lot out of reading it.

    My inlaws came to live with us a little over a year ago after we evacuated them from Gulf Coast hurricane - FIL was 95 and totally cognizant, MIL was 88 and we knew she was having problems, but she was pretty clever/smart at covering up her deficiencies... it really showed up when she asked my DH (her son) if he had his birth certificate and did he know who his mother was a week after living with us...

    Since then my FIL has passed away and she is now 89. At this point, she has really declined physically and mentally -- she has vascular dementia (MRI shows dead areas in brain) and sadly none of the meds recommended for dementia have been of any help. While technically vascular dementia is different than Alzheimers, it has the same effects:

    She doesn't remember anything more than 3 seconds, honestly, much less who we are or where she is; and yes, lives in the past. altho one second it is 75 years ago and 2 seconds later it is 50 years ago. Questions are usually repeated ad infinitum unless you divert her attention. Paranoid too about 'people' coming into the house.

    At least she knows we are somebody 'nice' altho I really think she thinks she IS in a nursing home most of the time. Keep in mind we are living in the same house as 19 years ago, they used to visit us every couple of months up until about 6 years ago!

    The only way she can maybe occupy herself is to read something to one of us. That and watch some of the old musicals if there isn't too much 'story'. . . otherwise she babbles on and on to us and makes absolutely no sense... we try to act as if we're really having a conversation (well, at least I do) but makes it impossible to even watch anything on TV.

    Oh, and she thinks people on TV are 'real' --that they are in our living room and can literally see/hear us. Since we have her use a potty chair as the bathroom is not accessible by wheelchair, we have to turn off TV as otherwise she thinks people can see her and is greatly upset. Also, I was trying to watch a DVD about Lyme - ie, a 'talking head' - and she started whispering comments to me about the speaker's appearance ... made it impossible to listen as I couldn't convince her it wasn't 'real'.

    In one way we are 'lucky' she cannot walk around without help (she is becoming very frail/wobbly), as she'd be into big trouble if she could; she was never one to 'sit' long, was always busy and had worked full time. However, sitting outside always seems to calm her.

    She is in stage 6 dementia, sliding in and out of stage 7 (when she has to be fed etc)... at stage 6 most docs will RX hospice, this is a BIG HELP!!!! - perhaps earlier. PLEASE talk to your doctor! The person does NOT need to have a terminal diagnosis... it just needs to be a dx where a person is not able to do daily tasks, take care of one's self, etc.

    I don't know what your finances are, but if they're very limited, Medicare will pay for a hospice CNA to come in for more than bathing/feeding. I know someone who has no money, Medicare does pay for someone to come in and be with her 5 hours/day.

    My MIL doesn't qualify for that but even so, a Hospice CNA comes in to bathe her 3X/week, plus a nurse-practitioner visits 1X/week and can write RXs and is on call 24/7, plus a social worker, chaplain, etc., anything that is necessary -

    There's even a doctor that can pay a HOUSE CALL if you can't get the person to their regular doctor. All of this plus RXs and equipment necessary because of the dx of dementia is paid for by Medicare, even diapers or pads for bed.

    There are also volunteers who can come sit and talk to the patient and help to entertain, altho they don't do any actual 'work' as most are older anyway. But at least they can give you a break.

    I can't say enough good things about Hospice, it is a Godsend for sure! And from what I understand, they cover very wide areas - so being in a rural area shouldn't be a problem at all. I believe I found a site that listed hospice agencies by state, also her doctor gave us a list.

    One last thing... the people at the Alzheimer's board here talked about the agitation and paranoia that occurs so often especially as night draws near... it's called 'sundowning'.

    They told me seroquel is used quite often. My MIL has just started using this, and it has helped greatly in keeping her from getting over-agitated - at times she was literally vibrating from worrying! Also, we don't give her any caffeine any more and that has also helped.

    Hope some of this is of use. I know it is tough, especially with the DDs we are dealing with, and I admire you for keeping him home with you.

    All the best,

    [This Message was Edited on 09/11/2006]
  10. rwins

    rwins New Member

    I want to thank everyone who replied to my request to share experiences with a loved one with alzheimers. I realize there are many options open to most caregivers but in rural areas they are usually out of the question. Mostly you deal with situations by yourself and it does help to hear from others who are knowledgeable. Thanks again and I will keep checking this message board for news.
  11. victoria

    victoria New Member

    But the hospice agency we're using told me they have about a 60+ mile range from their centerpoint location... I hope you check with your husband's doctors about the possibility of it. You may be surprised by what is available and what he qualifies for.

    all the best,
  12. rwins

    rwins New Member

    There is a hospice org. in the next town but they only deal with terminal cases. At this point I am just sitting here wringing my hands in dispair. Husband had knee surgery yesterday and no is totally disoriented and probably needed to be restrained last night. Not for being violent, just trying to get up and pulling on tubes and needles. Has had no narcotics so I hope today will see him in a more rational state. I am just grasping cyberspace looking for the strength and understanding to deal with this terrible situation..
  13. victoria

    victoria New Member

    So sorry that the hospice near you won't give you help, I thought it was their policy all over the country as that was the info I read on the Alzheimer's board here... have you gone there and read and posted? Someone might have some suggestions and more knowledge there.

    Perhaps you could also call your doctor again - if he can't keep the iv lines in, it isn't doing him any good. You can't be the only one in this situation. in your area... perhaps a county mental health clinic/social worker could be of help if no one in the doctor's office can?

    You are in my thoughts, I know it is so difficult!

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