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Old 11-03-2011, 03:00 PM   #1
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Dementia is scaring me!

I am a caregiver for my aunt in the last two weeks she has been doing some strange things she was diagnosed in 2009, she is taking her clothes off and also her depends. She sleeps a lot and is moaning all the time lately. She still eats but only wants sweets and soups.She has started to try and walk without assistance. This is scaring me. Is anybody else going thru this?

Thanks
Gail

Last edited by milesg123; 11-03-2011 at 03:07 PM.

 
Old 11-03-2011, 10:13 PM   #2
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Re: Dementia is scaring me!

Gail, know that many of us have gone through similar experiences. Our loved ones with dementia will not act as we do. They do things we consider bizarre when in reality it is just demented behavior caused by the disease.

Many will take off their clothes especially if they are uncomfortable. Make sure the clothing is right for the temperature. They will take them off if they are too warm. Opt for soft fabrics with elastic that is not too tight or long gowns or dresses. Make sure there are no tags inside the clothes to irritate. Try clothes that are more difficult to take off like shirts that slip over her head. Most of all just know it is normal demented behavior. It is a phase that she will pass through. It was nearly impossible to keep clothes on my grandmother and keep them on properly. Mom does not do this as much but has from time to time

As the disease progresses they do sleep more. This is usually a gradual change. If there has been a sudden change you might want to discuss this with her doctor. The moaning can be from any discomfort either physical or emotional. Be sure she is pain free. Moaning is one of the non-verbal signs of pain. Does she also fidget, wrinkle up her forehead between her eyes, or ball up her fist? If so you might want to make sure she is not in pain.

Two of the last taste sensation to leave us are sweet and salty. Most dementia patients prefer sweets because they still taste right. Mom loves ice cream, chocolates, cakes, cookies... you know! Soups are easy to eat. Cream soups are easier to swallow than liquids or foods they have to chew. They may also be salty tasting. As the disease progresses they do forget how to chew, and swallow correctly and it does make it more difficult for them to eat. Make sure whatever you feed her is soft and easy to chew and swallow.

They will forget that they can not walk without assistance. In their minds they are fine so if they want to get up they do. They have no idea they are not able to walk by themselves. Ask your doctor to prescribe a chair alarm if your Mom doesn't have one. It clips on her back with a string attached to an alarm unit. When she tries to get up it sets off the alarm so you will know and can help her before she falls. Just know that again this is normal demented behavior

Do you keep your Mom at home? Do you have any help with your Mom? You might want to consider contacting Hospice. They are wonderful at helping you understand what is happening and why. If your Mom is sleeping more, having trouble eating, can not walk without assistance, and possibly in pain... you and your Mom would benefit from their help. My Mom has hospice even though she is in a facility and they are WONDERFUL!!!!!

Don't be scared.... all the your described and more is behavior very common with dementia. I am so sorry you needed to find us but I am glad you did. This is a great place to vent, ask questions, and learn from the experiences of others. Please stay and type for a while

Love, deb

 
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Old 11-04-2011, 03:50 AM   #3
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Re: Dementia is scaring me!

Thank you Deb for replying. This is very trying at times. Its my aunt that I am caring for and not my mother. My Mom is not living. and my aunt was her only sister. Their parents are also deceased. Yes she is at home with me, and no other assistance is given. Other than monthly Nurse visits. Because it is to hard to get her back and forth to the Drs office by myself. As far as clothing its gowns that she keeps taking off at night along with her depends this is causing soiling a lot to the bed! Urggg!! She is not in pain that I can tell just fidety a lot. The nurse was just here on monday and said she was okay?? She justs sleeps all the time no matter what. She can still eat solid foods but is very picky about what she will eat then a lot of food is wasted! urggg Not good!! Thank goodness she can still feed herself but gets a lot on the floor! lol Yes her trying to walk by herself is scary though! At times she acts like I am the patient its too funny...I didnt know that i could call Hospice for her I always thought that was an end result? She does not have enough income for a nursing home care so i am stuck! Thanks for allowing me to vent.

Love Gail

 
Old 11-04-2011, 03:56 AM   #4
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Re: Dementia is scaring me!

Gail

Try going through Medicaid to get your aunt admitted to a nursing home. You say that she does not have enough money herself, so she should qualify.

If you can find a suitable nursing home for your aunt, they can help you in the right direction for Medicaid. You will find that there is a lot of help for you out there. Just start asking, you can't do this alone.

Last edited by kenbob71; 11-04-2011 at 03:57 AM.

 
Old 11-04-2011, 07:00 AM   #5
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Re: Dementia is scaring me!

Thank you for responding I am also in the process of relocating to Dallas In January and will have to wait until then to get her into a nursing Home. The problem is she seems to be getting worse. I dont know what to do. I cannot put her in a nursing home here because there is no one here to look after her! Ugggg My head hurts!!!

Thanks
Gail

 
Old 11-04-2011, 07:09 AM   #6
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Re: Dementia is scaring me!

In that case, go ahead and get on nursing home lists in Texas, and you can at least start the Medicaid process now, so it's all taken care of ahead of time.

Be aware that taking a dementia patient out of their normal surroundings can be problematic in itself. They don't usually respond to change very well. So, If you can move her just once that might be better.

good luck . K

 
Old 11-04-2011, 01:59 PM   #7
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Re: Dementia is scaring me!

Ken is right... do the leg work now and have a place ready for her when you move. Many do not do well with moves so if you can accomplish this in one move rather than two it will be beneficial to you both. Sorry I commented on your Mom when it was your Aunt.... a brain blip on my part!!

Instead of the gowns try sleep pants with draw strings. Tie them and tuck the bow inside the pants. You can even put them on backwards and tie them in the back. That will make it much more difficult for her to disrobe during the night and probably save you a lot of time and effort. Many times they will do that during the night when they are wet or soiled.. thus uncomfortable. If nothing else her attempts to disrobe will wake you and you will have an easier clean up.

Call your local Alzheimer's Association for help with what is available to you locally and where you are moving. They are a wealth of information. It is possible for your doctor to request temporary help for you Mom until you move.

As for Hospice, they are not just for the last few weeks of life. They are for terminal illness of which Alzheimer's is one. They will do an assessment and let you know if your Mom qualifies. It is worth calling and checking.... even if not now, then when you arrive in Texas. Mom has been with Hospice for the last 5 months and was just renewed. She is still ambulatory though with falls, has some difficulty eating though can feed herself some days, is incontinent, and has to have help with just about everything. So don't ignore the potential there

One thing you need to do is look at the possibilities rather than the negatives. Get on the phone and ask her doctor and other agencies for help both where you are now and where you are going. Find a facility and start the medicaid process if that is necessary. The more proactive you can be the less weighed down by the negative you will be

Love, deb

 
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Old 11-04-2011, 02:39 PM   #8
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Re: Dementia is scaring me!

Thanks Guys for all your responses I have spoken to a facility in Texas already, but they stated that she would have to be texas resident for 30 days before she can get into one.
I do have a residence maybe I should call back and give them my new address, but then they will probally want me to come i and speak with them :-) Another catch! I wish it was as easy as calling ahead and reserving a spot! :-) And she has been to respite over the years so she transitions well. I am going to call back down to texas and speak to some one else. What do you think guys? And deb I will try what you mentioned. Thanks

Thanks
Gail

 
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Old 11-04-2011, 05:12 PM   #9
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Re: Dementia is scaring me!

good luck and i know how hard it is.

 
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Old 11-04-2011, 07:13 PM   #10
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Re: Dementia is scaring me!

Thank You Deb!

 
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Old 11-04-2011, 07:15 PM   #11
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Re: Dementia is scaring me!

Keep calling until you are satisfied you will not get a different answer. I have never had to move my parents across state lines but I know a few have in the past with success. It may be a matter of state laws or protocol as well. It might be worth touching base with a lawyer in the area you are moving. They would be knowledgeable in local medicaid laws and resident requirement. It is hard to believe there is no way to move a loved one without taking them home for 30 days first. I would also ask if the care facility would put your Aunt's name on the waiting list so there will be a place there when you need it and she can move in

So many complicating factors but there is a way to where you need to be

Love, deb

 
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Old 11-05-2011, 10:20 AM   #12
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Re: Dementia is scaring me!

Thanks Deb I am gonna call on Monday to see if there is a waiting List. This might work. I guess its just a law when you move from state to state? I am not giving up :-)

 
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Old 11-05-2011, 11:22 AM   #13
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Re: Dementia is scaring me!

Quote:
Originally Posted by milesg123 View Post
Thanks Deb I am gonna call on Monday to see if there is a waiting List. This might work. I guess its just a law when you move from state to state? I am not giving up :-)
I don't think it is about a law. It is about wanting to make sure you have space at the time you are ready to move.
We waited 9 months for my FIL's private NH for memory impaired and finally someone died in this private room and we were able to move him there last year in end of July. It is a very nice home and there are many people who want to go in. So there is a long waiting list. It is not about the laws.

It does not hurt if you put your Texas address for her. When they ask for you to come, you just have to fly there, I guess...
Just let them think she lives with you in that state. I don't think they care so much about it. Just need 30 days...

I am sorry your aunt has dementia. I don't know which type? It makes a little difference as to what type it is. However, in the end stage, they all look similar. They don't know how to clean themselves, they sleep longer and they get more anxious. They would stop walking/talking and will have to eat pureed food given choking problems. My FIL has stopped walking this year and uses his wheelchair a lot (not chair-bound yet.) He is to be 91 in Nov. (He has stage 7 Alzheimer's.)

It is hard and scary if she is at home and you need professional caregivers to help you out. Sometimes the doctor can prescribe antidepressant or antipsychotic drugs so she can calm down. My FIL now takes both drugs with low dose for antipsychotic drugs.

My FIL used to take off his t-shirt or rolled it up above his chest for sun tan in the yard. He does not do this anymore in the nursing home. But once he took off his pants to urinate in the hallway because he is incontinent and had no time to walk to the bathroom. If he is too warm, he would pull up his shirts. Now he is more dependent so people have to do it for him. When he is very cold, he would be very upset screaming "cold cold" like a baby and then we added another sweater.

It is a long shot and it is emotional. He is acting like a mentally retarded person now and yet he thinks he is the elder.

Hope you will find help soon.

Hugs,
Nina

Last edited by ninamarc; 11-05-2011 at 11:28 AM.

 
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Old 11-05-2011, 05:30 PM   #14
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Re: Dementia is scaring me!

Thanks Nina for your response as i stated i am gonna call down there on Monday and see about the waiting list. I will let them know what my texas address will be maybe this will get better attention. And yes this is a terrible disease. Its overwelming at times. She sleeps all day and then when shes in bed she is awake all night? Hopefully by next week i can get her a nursing Home list.

Thanks a lot
Gail

 
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Old 11-05-2011, 05:53 PM   #15
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Re: Dementia is scaring me!

Gail, it sounds like she has her day and night switched which is typical of dementia patients. They circadian rhythm that tells us when to be awake and when to sleep gets all confused. My Mom did that! I solved it with a dose of Melatonin at bedtime. Melatonin is the natural chemical that is made by our bodies which starts out sleep cycle. As we grow older we lose some of our natural Melatonin. Those with Dementia have even less. Recently there was a study published that a dose of Melatonin at bedtime promoted more regular sleep and also seemed to help with Sundowning. Mom gets a dose of Melatonin 15 to 20 minutes before she is put to bed. It only took a few days to see a dramatic difference. We have been doing this for several months now and she is now sleeping at night and more wakeful during the day. Yes, every once in a while she will have a wakeful night but they are now rare So it might be worth giving it a try. It is actually an over the counter compound but you might want to check with her doctor first. Mom's doctor's only comment was... "It can't hurt"

Just keep being proactive and looking for the answer you need. The answers will come....

Love, deb

 
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