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So glad I stumbled on to this site...all comments, answers, information and need to share has been so helpful.
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When we met with the neurologist he said that nearly 1/3 of all suspected dementia patients improved with anxiety and depression meds. And read this about hearing: . Hearing is linked to decline in cognitive function. Your brain has to work harder to hear, and it takes those extra brain resources away from cognitive/memory functions. It's pretty eye-opening! We should all start getting regular hearing tests as we age. I don't even want to think about the generations after us who have been using earbuds to listen to music!
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Lol.kazaa and neatfreak,ithout a sense of humour we cant get on.
In thr beginning when i was cleaning out her room (it was smelly from the pee going under the lino and dried up faeces),i was amazed at all the stuff she was hoarding,books,clothes she no longer had any use for, newspapers older than my grandson(3),my childrens toys and some baby clothes,and lots of other useless stuff.
She watched me every day and said the same things over and over(dont throw anything away)and i said yes mum.
The more i tidied up,the more she "tidied up".Every day i find shoes on top of the kitchen cupboard,knives under her pilow,kettle,sugar and milk upstairs,butter and milk in the cupboard,haha,ned i go on?
I used to get very angry,but now that we have help, i can laugh at theses things.
There are still times when i feel that i cant go on,when shes walking barefeet ane we cant find all her shoes,or when shes just eaten and she says shs very hungry and hasnt eaten all day or when she has tantrums because she doesnt want to bath
Hang in there,all wil be well angela,hugs

e doesnt want to bath.
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We started with a neurologist with our Mom. He sent us to a top ENT for a thorough hearing test (followed by great hearing aids), then to a behavioral health provider to treat anxiety and depression. Addressing these two issues greatly improved Mom's engagement with others and her disposition. She still has to be reminded to wear the hearing aids though. The dementia still remains and progresses slowly. I asked her primary doctor if I should be making regular visits to the neurologist and he said no. They don't do anything else for her at this point (and medication is really not going to help). Her behavioral health provider told us the most important thing to do was to keep her physically and intellectually active. Even if she can't remember she had a great walk today and read a book, she still did.
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P.S. One more thing. When my mom was really low (literally she had no thyroid function and we didn't know it) and I was trying to help her shower, the ONLY way I accomplished that (she was crying and screaming at me that she didn't want to shower) was to cry myself. I got her feeling bad that she was making MY life hard. Would that be any kind of motivator for your dad? That he's worrying you sick? Would he care enough about you to get some help, to ease your mind? It might be worth a heartfelt discussion once you have some kind of help lined up, so he doesn't refuse.
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I wonder if you first need help for his depression before you even try to figure out what else is going on. I think some of his stuff may be pure depression. If you went at it from a mental health standpoint, I wonder if you could get some home help?

Call the Mental Health Association of Alameda Co - cost is free. Try giving them a call! And let us know what's happening - we care!! Their address is: 954 60th St. Suite #10, Oakland, CA 94608
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Neatfreak - looking at it one way, you don't need a diagnosis, but you do want to rule out treatable conditions that can cause reversible dementia. I would NOT use the words dementia or Alzheimer's. Call it "getting forgetful," and stress the possibility of getting that problem fixed. It would be terrible to let his brain get worse and worse if all he needs is thyroid medicine or vitamin B12.

The reality is that it probably is irreversible dementia. My husband, 68, is getting worse, but he did improve a little with Aricept. I think he knows what is happening, but just doesn't want to have his nose rubbed in it.

As you learn more about dementia, you will learn how to communicate with him, and more importantly, how Not to. Arguing is a waste of time and causes extra problems. A large part of problem behaviors are just the disease, and he will be more and more powerless over them.

I am still able to have some life and some love and laughs every day. Let us share your journey, and maybe it will be a little easier.
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I think what the nurse told you was bogus. He CAN'T drive any more, and I've never heard that as a condition.

This is what I found on the web.
Adult, Aging, and Medi-Cal Services
Alameda County Social Services Agency
6955 Foothill Blvd, Suite 300
Oakland CA 94605

Tracy Murray / Assistant Director, Area Agency on Aging TMurray@acgov.org

Keep us up to date on how you're doing. Especially if this Tracy Murray doesn't help.
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Thank you. My dad would not be happy in any type of facility; he has stated that forever; and he said they would have to take him out in handcuffs to ever get him to go. I don't want that. He was active until the past few months; he's going down fast. We need care for him here at home. Relatives are thousands of miles away and will not help; I've asked everyone. Pop and I have to do this alone; there is nobody who will help. About a month ago; my own talk therapist called my dads doctor and told her about our situation. His doctor was surprised; she didn't know of this and has only seen him as healthy; but he is Unwilling to go see the doctor any more. His doctor did send a nurse to evaluate him; BUT, because my dad still CAN drive (he hasn't, for almost 2 months), the nurse said they were not allowed to evaluate him and left. He said Medicare will not pay for any care if the person still drives. (The last few times my Pop DID drive; he got lost; and he crashed the car in our own garage. I doubt he will drive again; but he won't say that he'll give it up). I have talked to Adult Protective Service but because he is not deemed a danger to himself or others, in his bed 24/7; they said they are not the right place to get involved. My dad CAN get up and chat and even order some food to be delivered; but it takes a HUGE effort to get him to do it; several hours of begging, pleading, crying to get him to get up. I know a lot of this is depression; but he refuses to be treated for anything. I desperately need someone to help. My own depression and mental problems make it all the more difficult. We are in Oakland, California. I am so grateful for your replies; and I read a lot on your website last night; about people who are in similar situations. My heart goes out to all of you; I never saw this coming and I'm so unprepared. I pray for all of you to have the strength you need to get through your situations. Thank you very much for allowing me to be a part of this dialogue; and I hope in the future, I will learn something that I can add to help others.
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Angela, start by calling either your Area Agency on Aging or Adult Protective Services. If your community has a township office, they may have senior services. Explain what's going on and see what kind of help is available. You might be able to get a visiting nurse to come (my mom has that) as a starting point to speak to your dad and see what services are available. Good luck and keep us posted. If you have trouble with any of this, just post again and we'll help you figure it out. But start reaching out to agencies for help. Or tell us what town/state you're in and I'll look up numbers for you and post on your wall.
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Littlebitangela, that is an awful situation poor you I dont know how the helath service in us works but he should be getting alot more help and you too. Here the Doc works with the health board then a nurse comes and evaluates and decides how much help is needed. As im here I get 3 half hours a wk we dont pay as mum is a pensioner and im not working. When her dementia is diagnosed hoepfully we will get more help but the country is in big trouble fianancially and things may get worse.
Ill tell you when youre looking after a sick elderly paperwork is like an added torture theres lots of things i have to get around to but it just heaps on the stress BUT take sometime and get this sorted for your own sake surely you must be entiled to more help. Do you have other family? I really feel for you as im here mopping up a horrible mess everyday in fact all day every day. My mum just pees on the toilet floor or her bedroom floor its awful. I just wish my family had one week of what ive to put up with its just overwhelming.
I know you dont want it but do you not think he should be in a NH maybe around others might take him out if his shell a bit?
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My father refuses to see a doctor any more. He's 83. I won't (and can't) force him. 9 years ago, my mom died. Dad got depression then; spent a few weeks in the mental ward; but refused talk therapy and medication once he got back home. He was fairly active until a few months ago; he now stays in his bed nearly 24/7; only gets up to eat and use the bathroom. Pitch dark; silence; wrapped in flannel sheets. Has shut out the world. I've tried everything to get him up; a bit active; he wants nothing to do with it. He's comfortable and content in his bed; sad for me to see but he won't change. We've had a long time "mild" hoarding problem; paperwork of every type is years behind; we do have a helper for organizing it now (may take a year to sort it all out). Meanwhile; Dads memory decreases rapidly. He's always had a weak bladder; every 15 minutes in the bathroom is normal for him; but he gets more on the floor and himself than in the toilet. I'm in there constantly mopping up after him; its exhausting; besides having to clean the toilet seat of brown residue each time as well. He rarely showers; twice a month. The smell is more than I can bare anymore. I got him to wear Depends this last week; he won't take them off for several days until they are completely soaked. I desperately need help with his hygiene. I know all the risks he's facing, being this way. I don't want to have him forceably removed to see a doctor; nor be put in a facility. We need care at home. I'm on disability; I'm struggling to manage all of this; its way over my head. Begged friends and relatives for help; nobody will. I don't have time to try to research dozens of places that provide care; figure out what is available; what we need; there's just too much and its overwhelming to me; I'm barely hanging on to the chaos we already have. How can I easily find a trustworthy place to contact? What types of help can these places provide? Am I going to be mopping the bathroom for the next 20 years, every 15 minutes? He's so weak from his refusal to get up; I doubt he will be able to walk much longer. Is there any type of person or place who is familiar with stubborn Seniors who can help me understand what type of help is out there; what we might need; and also teach me what I need to do to keep helping him myself. I can barely leave him alone for an hour now; I can't imagine that someone coming once a week to get him to take a shower is all that is available; is there nothing more? I'm exhausted; I've given up everything in my life these past 9 years; I'm miserable; I'm alone; I'm scared; I'm lost.
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Neatfreak, I see that it is your husband you are caring for. Is that the loved one who you want to have tested, or is it a parent. I have dealt with both a spouse and a parent with dementia. I agree with ann1958's comment that at age 91 it may not be important to try to determine which kind of dementia. But it can make a great deal of difference in the care plan for a younger person.
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Ha! sorry but cant stop laughing "neatfreak" now would that have anything to do with her hoarding!!!!!!!!! I was going to call my name "butter in the breadbin" boy do you need a sense of humour here its what keeps us sane!!
YES to everything youve described was hoarding now its cluttering? shuffling about making a mess BUT shes tidying up (god help me!)
Ok in 3 yrs LOST: 3 hearing aids, false teeth almost a weekly thing now but cost her abit she now has 3 pairs!
Wearing odd socks? wearing only one shoe or slipper and dosnt know what my problem is?
You think its her hearing but when you shout she still dosnt get it?
In constant danger leaving things in her way and not understanding WHY its dangerous?
You go shopping and shell just head off in which ever direction shes wants OH but dont tell me.
Arrange to meet her in one shop spend 2hrs stomping around all the shops until you find her then shell say "that wasnt the plan"
I had a whole city police dept looking for her one day as i lost her at train station but she didnt look for me she went home boarded with no ticket meanwhile im a lunatic looking for my mum all over the city and she was already at home having tea!!!!!!!

Ah the joys of dementia! of course they are all perfectly logical and always right and dont ever forget that!!!

Did I mention butter in the breadbin and milk in the cupboard!

Sorry sometimes its funny! Please god your mum dosnt have this but we are all here to advise! GULP!
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Thanks for your input. Really relate to "shes intelligent but then would do crazy things at home." That's so understandable...no one, even doctors, would suspect. I have enabled the hoarding, losing things, having to repeat information, forgetfulness, compulsiveness. I feel so disloyal and a traitor for even writing this, but realize all of the above is getting worse as health is deterioating.
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We simply stressed our concerns with the doctor, and then brought FIL to the doctor for a regular appointment. He asked him all kinds of questions while my husband sat behind his father so he could gesture to the doctor. For instance, the doctor said to my FIL, "I hear you've lost your wife. I'm so sorry, how long ago was that?" My FIL answered, "A month ago". His wife had been gone 17 years. My FIL can make perfect sense and seem OK, but obviously there is dementia involved. The doctor told my husband that it was not really worth further testing as no matter which type of dementia it was it was progressive. We agreed. He was 91 years old at the time, and to put him through extensive testing would have been confusing and tiring for him. However, if you need to know which type of dementia, you can bring her to a specialist. You don't have to tell her what the visit is for, just that she has a doctor's appointment that day.
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My sister and I did this with my mom about 3 years ago. Her mom had AD, so when she started to have memory issues, we said we wanted to get her checked out. We made an appointment with the nearest neurologist, wrote the appointment on her calendar, and showed up to take her. I think she was actually relieved to have us take some of that burden off her. She was diagnosed with Mild Cognitive Impairment and put on meds. Now she is in the moderate stage,but she always tells us "I'm so glad for the (Exelon) patch, because my mom couldn't do anything when she was my age."

It will be well worth it to get your loved one to go. I would suggest you make sure you get him/her to a doctor who specializes in neurology, someone you like, and someone who will be there over time. That first neurologist up and moved away with little notice and we had a very hard time finding mom's records for the new doctor.

In my dad's case, it was not dementia, it was physical (very bad knees and a family history of diabetes). He's always avoided going to the doctor but we made him an appointment and took him. We told him, "We made this appointment for you because we love you, and you are going to the appointment because you love us." The good news is that he has no serious medical issues other than his knees. Best of luck to you!
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Hi i dont know if this will help BUT heres what I did. My mum has had a carer for ten years who retired she only did one hour a week which was fine when mum was just here on her own and coping. The carer retired recently so I told mum although not too far from the truth that she needed to see a specialist doc for old people to determine how much more FREE care she could have a week and that she needed to do tests to get this! It worked and she was quite happy to go NOW I did not tell her he was a private and paid behind her back then took it out of her account later she didnt notice. HE ordered a brain scan and she now has an apt to see him for results in 2 wks. I am sure this is dementia and this forum will be able to answer any questions you may have. They will usually do a memory test but dont let this fool you as my mum passed as shes intelligent but then would do crazy things at home. I would be interested to know how you get on and in same boat here and dreading the outcome but fear the worst. Good luck and I hope this helps even sometimes a nurse can call and just examine her and sneak in a memory test but my best advice would be a geriatrician.
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