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    Old 06-26-2009, 08:55 AM   #1
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    Mother Dementia Questions (Meds, Doctors, Home vs. Nursing)


    My mom has been suffering from Dementia for about 2 yrs. She is somewhere between the early/moderate stages. She still lives at home and I go over there every day for at least 3 hrs and sleep w/ her 4 days a week. She has 0 short term memory, is confused about dates/times, and is lonely. Her strengths are that she can still dress and bath herself, still has good verbal skills, and because she has bad knees - she does not wander. My questions are this.

    1. How much/what kind of medicine should a person w/ Dementia be on?

    She currently takes Zoloft (aniety) and Namenda. We have tried a combo of Namenda and
    Exelon (Gave her headaches)
    Reminyl ER (Makes her dizzy and light nausea - plus shows slight signs of more confusion)

    At one point before Namenda, she was on Arricept but that made her paranoid.

    Does anyone know why do that put Dementia patients on combinations of medicines? If so, can you guys share some potential combinations?

    Mom's mood seems OK w/ just the Namenda. Here short term memory is already gone so I am not sure if the progression of the disease would be slowed down w/ a combination. Need any advice...

    2) When do you know you have to either bring someone into the home or consider other alternatives - like assisted living or nursing. Mom does pretty good by herself during the day. I set up her breakfast and lunch on the before I go. She only has breakfast pills and takes those OK. She only uses a coffee pot/microwave which both have auto turn offs. My only issue w/ her during the day is her not picking up behind herself - I do that when I get there after work.

    Nights, however, are really hard for her. I sleep there 4 nights a week and stay the others till 7:30-8:00 p.m. On the nights I go home she calls every 15 minutes - scared, lonely, mad, you name it. She is NOT a social person so I don't know when/how to move to the next step or even to know when it is time.. Would appreciate any advice.

    3) So far, my Mom's treatment has been through a primary care physican and physcharist. Should she see a neurologist? Pro's vs. cons...please....

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    Old 06-26-2009, 10:47 AM   #2
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    Re: Mother Dementia Questions (Meds, Doctors, Home vs. Nursing)

    Welcome to the board Pricha. Sorry you needed to find us but glad you did. We all are or have been where you are now. I can only speak from my experience with my parents, both of which have their own dementia. Mom has Alzheimer's and Dad has Vascular Dementia.

    Dementia patients are put on a coctail of medications because there is nothing that will "fix" the problems. Namenda and Aricept are supposed to slow the progression of the disease. It is not a miracle cure all. It seems to work for some and not for others. Some have side effects and others tolerate it well. It is trial and error to see what works and if anything works. The Namenda is not only supposed to help with short term memory but also the process that make activities of daily living (bathing, toileting, etc) easier for your Mom to accomplish so short term memory is not the only consideration. Mom was given the mini mental several times. When her score reached the single digits they deemed Namenda and Aricept no longer useful and she stopped the medication at that time. At that point she was sporatically incontient and had lost her ability to understand auditory input and was losing her ability to speak coherantly. These medications do nothing for the anxiety, paranoia, delusions, depression, or other psychological side effects that dementia causes. So each of these has their own medication. Both of my parents are on a litany of psychotic medication for behavior problems.

    We also attempted to keep Mom and Dad at home after Mom's disgnosis. We had a sitter with them 10 hours a day five days a week. Mom hated having somebody in "her" house and eventually ran off the sitter. One of the daughter's was with them every weekend. We spent Friday and Saturday night with them and a niece stayed on Tuesday night. Those other four nights a week were a nightmare. A small fire when a batter back up caught on fire where Mom and Dad didn't know to call 911 or get out of the house. Mom's broken arm when Dad (who was not supposed to drive) drove her to the hospital and home. We still don't know how her arm was broken. Dad's overdose of medication that required 5 days in the hospital. Mom told everybody it was a heart attack. Pots burned and hidden in the back of cabinets or thrown away. Spoiled milk poured on cereal for supper. We would take them nuke and heat meals only to find them spoiled in the fridge on our next visit. Don't count on that bad knee to stop Mom if she has delusion and decides she needs to "go". Dad limps on a good day but managed to get away more than once. They "functioned" ok with the normal day to day but any emergency threw them into chaos and they had NO idea what to do. It is those times that you have to worry about if Mom stays home.

    You didn't mention if Mom was driving. Taking my parents driving priviledges was the hardest thing we had to do but also necessary. I just wish we had done it sooner rather than later. Mom thought she could still drive even though she ran other a yard statue beside the drive and had no clue she had done it. I am glad it was not a child playing in the neighborhood. She would back out into the street without stopping to check for traffic. She would get out of the van and leave it running then wonder why she couldn't find the keys in the house hours later. When it was brought to her attention her comment was, "It would eventually run out of gas!!" A normal 5 hour drive back from our cabin that she has been to 100's of times took her 13 hours because she got lost on very familiar roads. And she didn't have the awareness not to drive an hour to a doctor's appointment in the middle of a catagory 3 hurricane!! So if MOm is driving... please be aware of the possibility.

    As for the other options. In home care needs to be 24/7. Some tolerate strangers in their home and some do not. There is the problem of finding dependable honest help. Thieft is not uncommon and you have to remember that you are entrusting your mom, who can't remember what happened, to the care of a stranger with nobody else around. You also have to remember that Mom will make up stories about the caregivers. So you have no way of knowing what is real and what is not. Some adjust to Assisted Living, especially those designed for people with dementia, and can live out their lives there. We did try that with Mom and Dad for a while. Mom has too many psychological problem in conjuntion with her dementia to be happy anywhere and Dad is prone to delusions which create wandering. We have recently had to move them both to a locked Alz unit. This does give them freedom within a confined space with a smaller number of patients. If properly run it is an amazing solution. It has been the answer for us. The other options is a nursing home. The need for nusring care is at the disgression of the physician and probably not necessary for early stage ALZ. A lot would depend on what you have availble in your area then trial and error.

    As for us, we had to try care at home first because both Mom and Dad wanted to stay there. With Mom's reaction to the caregiver and their deterioration it didn't work well. Then we tried Assisted Living which worked well for a little while but with further deterioration it was no longer suitable. Now we have them in a locked ALZ unti and for the moment that is working. It is very possible they may end up in a nursing home before it is over. You do need to remember that each move is traumatic. There is a major adjustement period because they have no learning curve. Your Mom is functioning on her long term memory of where she is. When she loses that familiarity she will have to revert to her short term memory to function and it's not there for her. So expect a preceived deterioration if she is moved out of the home. Each level of care has it's own pluses and minuses. You should be aware that only Nursing Home qualifies for medicaid reimbursement.

    I do hope you have a durable power of attorney and medical power of attorney for your Mom and your name is on all the checking, savings, and investment accounts. There is no way to express how important this is. We just had to use our POA to change the address on a power bill. Nothing can be done in Mom's name without the durable POA and no medical decisions can be made without the medical POA.

    I have probably raised more questions in your head than given answers but these are all things to consider. From experience I would recommend that you come to a decision sooner rather than later. Also remember that you can not count of your Mom for logical input. The disease effects their ability to make rational decision. Beyond that even if she makes a dicisioin, she will forget it and it will all have to be done over and over. Also remember that nothing is forever. A decision that works today might not work next week. There is not guilt and no looking back. There is just doing the best you can, with the information you have at the moment, and then going on to the next day and doing the same.... even if the decision is completely differen from the day before This is a diease that changes daily and has no instruction manual.

    Keep typing. I am sure others will chime in with their words of wisdom as well. Know I keep you and your Mom in my thoughts and prayers that you find the answers that will work for you.

    Love, deb

    Old 06-26-2009, 11:17 AM   #3
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    Re: Mother Dementia Questions (Meds, Doctors, Home vs. Nursing)

    You might look into taking her to see a specialist that deals with geriatric care, especially AZ. Most primary care doctor exposure to this disease is limited. Deb is correct in saying that you need to get your affairs in order, Power of Attorney and Medical Power of Attorney. You may even go see an Elder Care Attorney to get all this in order. Also driving is a definite no. AZ patients can make up all the excuses in the book like my MIL who said she never had and accident in her life and how dare we question her ability to drive. She hit a parked car and the police told her not to drive anymore.

    Keep reading the boards and you will find alot of answers and support.

    Old 06-26-2009, 12:26 PM   #4
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    Re: Mother Dementia Questions (Meds, Doctors, Home vs. Nursing)

    use the older threads like a library. Go back and read some of the other threads. There are questions similar to yours that were answered and problems that arose that was shared.

    We are here for you. You are not alone. Are there siblings in your life? if so, are they much help or are you the only child?

    Thanks and keep writing.

    Old 06-26-2009, 01:12 PM   #5
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    Re: Mother Dementia Questions (Meds, Doctors, Home vs. Nursing)

    hi, i had these same questions months ago and now my mom passed away. she does need to see someone else. this seems like an awful lot of work for you which leads to something has to be done for your mom. in home care 24/7 or a nursing home. i realize she cant wander, but she can harm herself in other ways. i so know how horrible this situation is. you have to do whats best for your mom. this current situation is not working. good luck to you and post again.

    Old 06-26-2009, 04:21 PM   #6
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    Re: Mother Dementia Questions (Meds, Doctors, Home vs. Nursing)

    I was my Mom's caregiver for 5 years, moving in with her. I did work during the day but I was in charge of her from 3PM to the next morning, and all weekend. No medications helped her at all. As she got worse and worse, we had a home health aide come in to stay with her. I would judge that she was in the beginning/middle stage when I came, and by the time 5 years were up she was in late middle to late stage. By then it was impossible to leave her alone. She burnt pots, threw out good food, put dirty clothes in the drawer, threw out important bills, was an easy target for unscrupulous life insurance salesmen, etc. My brother got POA over all her affairs at the last possible minute; luckily she didn't understand quite what was going on but made a lucid enough impression on the Notary so he stamped it.

    Thus my brother was able to take care of her financial affairs and later her nursing home bills (also involved getting her on Medicaid when her money ran out.)

    Mom wound up in an excellent nursing home. I wish she had gone there a year earlier. There she had 24/7 care, always with a well rested nurse, not a totally exhausted daughter. Also she was treated lovingly but with authority, so she did what they told her (like wearing Depends) whereas with me she fought tooth and nail to keep on pretending she was not wetting herself and defecating on the bathroom floor.

    Those were 5 hard years for me, but I am glad I didn't let Mom stay alone, that would have been a disaster.

    Mom passed away 18 months ago after 2.5 years in the nursing home.

    I watched her lose first her short term memory, then all her memory, her ability to walk, eat, swallow, have a conversation, and recognize me. It was sad. But I am glad I did it.

    God bless you as you start off down this path, and God bless all caregivers.



    Old 06-26-2009, 09:08 PM   #7
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    Re: Mother Dementia Questions (Meds, Doctors, Home vs. Nursing)

    I would also suggest that you take your Mom to a specialist. The GP's that I have dealt with do not have the expertise to deal with the dementia or the psychological problem it can create. Dad was misdiagnosed by his GP with ALZ for years. He actually has vascular dementia. Mom's GP kept tell her she was ok. I took her to a Memory Asessment Research Service and she was diganosed with moderate to sever dementia consistent with ALZ. When I took the diagnosis back to her GP and ask for her driving privilages to be taken away, he patted her on the shoulder and told her if she would just pay more attention she would be ok!! Neither Mom nor Dad have responded well to the dementia drugs. They are not even designed for vascular dementia but Dad was put on the anyway. It did nothing to slow Mom's Alz and I firmly believe it was what started her behavioral problems. We have had doctor's that throw meds at behavioral problems and others that refuse to prescribe. We finally found help for Mom at a Senior Behavioral Medicine Hospital Unit under the care of a geriatric psychologist. They are now both under the care of a geriatric specialist. Yep, I absolutely recommend a doctor, in whatever specialty, that has an extensive knowledge in dementia/ALZ, and connected beharioral problems.

    Love, deb

    Old 06-27-2009, 04:57 AM   #8
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    Re: Mother Dementia Questions (Meds, Doctors, Home vs. Nursing)

    pricha2...welcome to our little world. I sure agree with caringsister...there is a WEALTH of information to be learned from past posts...make yourself comfy and start checking back!

    I have lost 3 loved ones to Alzheimer's in a little over a year...each had been put on a different med specifically for this dementia........and I'm not sure we would even pursue that again, if given the chance to change things. The progression of this disease still happens. I agree Mom and MIL seemed to be "with it" a little while longer...but I'm not sure if that benefit was for us or them. The meds they were all put on to help with the depression and personality changes took a while to adjust...but actually did seem to lessen the fear and confusion for them somewhat.

    Sometimes, that decision of where to put them is taken out of our hands. For Mom...she broke her hip and never returned home. For both inlaws...we made a much-needed dr. appt for MIL...talked FIL in to going with us...and both never went home again. I HONESTLY don't know how families are able to get their loved one placed without a doctors' help.....and greatly admire those who are able to take this step! We have to set aside guilt and really come to terms with what is needed for our loved one.

    Some decide to care for them at home...a challenge many of us are not able to do...and they surely have my admiration!

    When you mention the nights being awful for your has to be because often, that is a tough time for the Alzheimer's person. It is called "sundowning"....and a common frustrating time for them. She IS scared...she IS lonely...and she is more irratable during this time! I can see the sadness in your post about having to stay with her during the night. You are a responsible person...and I'm glad you've found your way here to this forum.

    Long road ahead, I'm afraid.....keep posting and asking questions. Sending positive vibes your way........Pam

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