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Details: My mom's always had depression, and for the most part, she's been able to fight it back with all of her strength. "If life kicks you down, it's time to start kicking back" was her favorite saying after a good cry. But now, she just can't get out of the funk, understandably.


She has moderate stage dementia. She was doing just fine, and her symptoms weren't nearly as severe, up until about a month ago. It was a sudden decline. She's having difficulty with pretty basic things, like calling up her bank to get her balance (she doesn't do any of her bills - I've been handling that for the past four years, but she does like to know her balance and withdrawal whatever left over money is to buy snacks from her local store). She's scared of trying anything because she doesn't know what to do. I couldn't imagine how frightening that would be, to suddenly forget how to do what you consider basic things that you used to do all the time.


What's made things worse recently is that the doctor started her on medication to help with the dementia, but the side effects are awful for the first few weeks. She's nauseous, can barely get out of bed, just wants to sleep all day. When I call her, and I call her easily three times a day, all I hear from her now is how sick she is and how she just wants to die. It's not her trying to get attention or to guilt me. I know that. She genuinely wants to die, and she feels lonely and all by herself in this. "I go to sleep every night and hope I don't wake up". It's so, so hard to hear that, and I cry every single time she says it. I feel so damn guilty, but I'm moving back in asap. In the meantime, she gets tons of calls from me, hour long conversations over the phone, and I spend my weekends with her. I'm just trying to get my ducks in row before moving in to take care of her. I need to find a part time job to quit my full time job because I have debt, and I need to work on getting my license, because I've never had access to a car to learn until now in my 20s (and as luck would have it, I've learned I have a fear of driving, so it's been a slow process, but I got my permit!!). My brother is there to offer help, but he can't do it often because he works 12 hour days with a wife and three kids under the age of 5. He does take her to all her doctor appointments, which is most important.


In the meantime though, we're in a stressful situation. She has antidepressants, but we took her off of them at her doctor's okay because as soon as these pills "kicked in", even though she was noticeably less depressed, my mom had this decline in her memory and abilities. So we were suspecting maybe they had something to do with it. We're starting her on it again. I don't know how to make her feel better. Even if I could take her out of the house, she feels so sick, she doesn't want to leave. How can I help her? How can I make her happy and help her through this? She has no hobbies other than her pets...I can't be there all the time right now, not with this job and running around trying to arrange POA and get her signed with Medi-Cal, and so on...I'm just so last right now...

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My wife's memory loss first became noticeable thirteen months ago. Six months later, she was diagnosed and had all the classic symptoms of mid-stage dementia, i.e. depression, sleeping late, crying, hallucinations, sundowners, shadowing, withdrawing socially, and weakness. Imaginary people were in the attic, and she often thought that I was my exact double. (She was already taking Melatonin and Aricept.) Then, I took her to a neurologist, who added the anti-depressant, citalopram , and said that it might reverse some of the symptoms. I thought he was nuts, but in a few weeks the crying stopped. Now, just three months later, the memory loss is still there, but the above classic symptoms are 85% gone. She is stronger, laughing again, and re-engaging socially. Note: the doctor said, that the citalopram can only improve her quality of life by treating the symptoms, but the memory loss will continue. It is like treating someone with pneumonia, who has a cough. Treating the cough does nothing for the pneumonia.
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Rinnytintin, all the discussions about your mother are good. I am concerned about you. First, you are very young to be doing this. I wonder what effect this is going to have on your own future. Will you have to give up getting married and having children? How will it affect your career and retirement? You are in debt at the present time. If you are not making much money while you are caregiving, how will you care for yourself in the future?

You need to make sure you are caring for yourself when you care for others. Caregiving now is often a 10-20 year commitment. We can start off as part-time caregivers, but soon it takes more time. Make sure you have yourself covered so you don't end up in poverty on the other side.

I know it seems selfish to think of ourselves when our parents need us, but we do have to. How will caregiving affect your dreams and your future? Will you be able to work them together? I usually advise young people to look for other options in caring for relatives. This is because the 20s are such important years for building your family and career. I sense, though, that you are devoted to your mother and would make sacrifices willingly. Still, I would think about these things.
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All of these responses are on point. As soon as we got the diagnoses, I set things in motion with my dad i.e. adding my name to his accounts, POA, Health Care Directive, etc. He was still pretty lucid then but we knew what was to come. I'm also going to shrink these docs and laminate them to keep in my wallet. The obsession with money is normal, it's the one thing they think they can still control. I've learned from my church support group not to explain, rationalize or argue with our loved ones. It will only wear you down. Since depression has kicked in, I've requested an antidepressant for him. Hopefully, this will give us both some relief. In the meantime, his care taker convinced him to start keeping a gratitude journal. In his dark moments, we sit down and review everything he's thankful for and it seems to calm him down. Be encouraged.
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You mentioned she had a sudden decline. Please have her checked for a UTI. A urinary tract infection can and will cause sudden decline, confusion and delirium. It is very common for dementia patients to develop UTI's. This should be the first step you take when a loved one has onset of disturbing behavior that happens quickly. It is a simple urine test and the first thing that should be ruled out. I have been down this road. When my mother reached mid stage dementia she was constantly plagued with UTI's. They are devastating to someone with dementia.
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My father became very depressed and cried . I used edible chocolate medical marijuana. It worked. When you are desperate you will do whatever it takes. It worked for him and many people with dementia and Alzheimers. I did research before I did it, im so glad I did. He was happy and laughing until the end. his doctor would never say its ok, they want to pump him with anti depressants which dont work. Medical Marijuana is the only thing that worked for my 80 year old dad.
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Rinnytintin ,My heart goes out to your and your mom. There are excellent comments here from a community of people who know what you are going through.

The one thing that I would stress is that many people can't take the drugs that for Alzheimer's. Yes, they are worth a try. I've read different estimates but apparently around 30% of the people who take them have positive results. Even with plenty of room for error, that leaves well over half of the people who try them find they don't help, and most of them find that the side effects are too much.

Taking too many drugs can make take older people on a downward spiral. If your mom had an antidepressant that worked well, then maybe should should take it. However, confusion can be a very real side effect of some antidepressants so you were right to try to see if she is better without them.

Work closely with her doctor. Drugs can be the right call in many instances, but the older we get the more likely we are to have problems with them. Pile then on and we're looking for trouble.

All the best to you both. We'd love to hear how things are going when you have the time and energy to check in.
Carol
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I want to add, that for my parents, what I did was put together a Resource Book, a binder with dividers. So that when I needed to look something up, it was all in the same place. A section for all their IDs and to keep xeroxed copies of their insurance cards. All the id numbers needed to access their accounts, passwords etc. Then a section for all the places that I had to pay bills. I set up as many as I could on auto pay and others as a bill pay so I could do it via on line banking, rather than remembering to write checks and mail. Then a section on Medical...with all their MD and other health agency contact numbers. My parents lived in a different town, so I didn't go to all app't with them. Initially, I would fax my concerns and questions to each doctor before the app't and also add questions that each parent had, as they talked to me, because they would forget to ask on their own as their dementias got worse. As they told me a health complaint, I would take notes while on the phone...and then add all that in a fax. Later, when they had caregivers who went to the dr appts with them, I would plan to be home, and caregiver would call me on the cell phone when the docter came in the room, and we would have a 'group' meeting. Where I could, I also had doctors and other agencies email addresses or we texted info back and forth too. In that section on medical, I added a section where I kept all the faxes and notes about health care just for references. As I was handling all their money and investments, I had a section for all those I needed to contact about those items....their IRAs, the lawyer, the investment firm etc, all had a section in the binder. I even put plastic pockets in it, so the actual contracts could be stored in the binder too at certain points when dealing with cashing in money and stuff. Just make such a tool with the sections that you see you need. I took the binder whenever I traveled to see them, so I could work from it whenever I needed to. Perhaps you and your brother would each need one, that contained the parts each would be responsible for handling? It just saved me from having to constantly look for something...in the file cabinet, in the piles on my desk...whatever....it just made my life easier to have one 'go to' book, most of the time!
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If you are moving in with her to try to keep her safe and at home, you may quickly get totally overwhelmed. You need to make a list and work from a list on all that has to be done, in order to stay organized. Yes....start with which of you....you or brother, will have POA and Healthcare directives signed for your mom. Get it done while Mom is still able to be considered competent because if you wait too long, it will be more expensive, going to court for guardianship. POA or guardianship are the only legal ways you can have control of her money and discuss things directly with her doctors etc. Just having your name on the checkbook, doesn't cover things if dementia gets worse, and you need to make decisions that Mom does not like and is not competent any longer to argue about. THEN, next on the list is getting her meds right. You can't fix depression if Mom is feeling physically bad. There are several meds for dementia, including a patch now. Once you find a med that is not upsetting her system, then you look at depression meds to add. Also, even if she doesn't want to 'go' anywhere....in good weather, sitting outdoors in the sun for 15-30 minutes a day, will help depression...focusing on nature, the sound of the birds singing, and just the sunlight alone are all helpful. Sometimes, when a person is competent, just being more clear in your conversation can get someone out of a depression state. As in directly stating that there are things we CAN control and things we CANNOT....so let's focus on how to make life more enjoyable within the limitations that are coming to her. Perhaps, if doc would order some home health evaluation, that would include a social worker coming by to talk with her for awhile. Being out and about and around other people is also helpful for those with depression and dementia. Sometimes, seeing that many others have to deal with the same things in life is good to get a change in outlook going. My thinking is that the next thing on your list, after you get your life rearranged so you can move in with her, is to start team working on her care with your brother...so there are not any conflicts down the road. On that list, take a look at ALL her assets and finances, to determine if you are going to need to get her qualified for Medicaid down the road. An eldercare attorney who would help with the POA and other final documents could advise on this and get you started. With dementia, the reality is that there will come a time, when you either need to pay for helpers coming into the home to care for her, or she will have to be placed in memory care, or a care home of some kind. That needs to be paid for. It's important that Mom's money only be used totally for Mom's care for 5 years before needing Medicaid...and excess money can only be spent for certain things to be considered OK. You need these rules to live by....even if you don't think you will need Medicaid for her. You need to develop a long term list and a short term list, and as you take over her care....you will only be making progress with a daily list. Also develop a resource list of sites and people to go to for help and ideas as things happen that are new to you! This site is good. The Alzheimer's Association is good. Your area Council on Aging is good. You may need help from places like a Day Care Program, Meals on Wheels, Group homes, assisted living or memory care homes....Just make sure that all facilities you would ever consider, WILL accept Medicaid if you think you will ever need Medicaid help, so that you don't have to move Mom in and out of care places because of money. Dementia and depressed people do well with a clear daily routine ....up at a certain time, get dressed daily, eat at certain times, meds at clear planned times, activities, diversions, snacks and a calm, quiet late afternoon into evening time. No chaos in their lives...and social activities that they enjoy....rather than forcing them into activities that ultimately upset their minds. I have been doing this for 4 years now, for both parents....and my husband. AND no direct care of either parent. Plus I am a retired RN....and this is still the hardest thing I've ever taken on in my life! You cannot do it all by yourself.
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I have almost the exact same situation with my mother. I had to put her in a assisted living memory care and now she is much better.
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If your mother is still having side effects from the dementia medication it might not agree with her. My mother took 5 mg donepezil (generic aricept) for years. Her doctor doubled it to 10 mg and she had terrible side effects so he took her completely off it. There's a chance that your mother might improve like my mother did if it is side effects from the dementia medication.
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You don't mention what medication the doctor put her on. That is important. When you realize you have dementia and things are changing like you mention,depression is a common occurrence. It is one of the worst stages because the patient is tortured with the reality. My mom went thru that. What helped her depression was I fact anti depressants. She takes that as well as aricept. A senior psychiatrist would know better how to treat than a regular doctor.
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Depression can cause you to loose focus and can be even cause memory problem. Please trust the doctor and get her back on her anti depressants. I have truggled with depression my whole adult life and am currently in a excellent place. I take anti depressants ,exercise daily , use behavior modification and spend time outside. The first step is for her to get back on her meds. It will take about three weeks to kick in. Don't take her off of them once she's doing better. Remember it's the meds that's helping. This is so important. The doctor knows best.
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It is a stressful situation when you are trying to help a loved one who has dementia. I dealt with it with my cousin, who I was responsible for, but I know it's different when it's your mother. There are a few things that I would consider.

First, do you have her signed Durable Power of Attorney and Healthcare POA? If not, is it too late to get her to sign them? Is she still competent enough to sign them? I'd discuss it with an Elder Law attorney immediately. It's very difficult to be her advocate if you don't have those documents. If you don't, you will likely need to get legal advice on what to do next.

I would also discuss her meds with her doctor and report all threats she has made. Sometimes, the meds that are designed to help put the symptoms of dementia at bay for a while cannot be tolerated. And, there are a a lot of people who don't see that they are that helpful, when compared to the side effects. If her prior meds for depression/anxiety were really helping her, then I would discuss how they may be more important with her mental health. Inquire about the dementia progressing, with or without those new meds.

I would put my primary focus on trying to protect her right now. Having her handling her own finances past a certain point is risky, since she could get conned or make terrible decisions. I'd try to redirect her from banking and money issues. I'd get that out of her hands for her own protection.

Also, after the early stages of dementia, leaving the person alone for any amount of time is risky. As she progresses, it will likely take shifts of people to care for her. Is doing that in the home alone feasible? Does she have funds to pay people to come in to help? You can't work 24/7 for 365 days a years.

For dementia patients that's the care that is needed. Do you have reliable family members who can come and help? I would research all that is involved to see if quitting your job is a wise move. There are so many ways this could end up causing you grief. I would research all of your options, depending on her resources and see what makes the most sense.

I would keep in mind that dementia patients are often anxious, confused and discontented. That's the nature of it. Often medication is needed to help when there is mental pain. Often providing a favorite meal, giving a hug or smile can make them happy. I'd focus on simple things and understand her limitations. I wish you all the best.
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Oh lord, I know that feeling. I was the live-in caregiver for my grandmother when I was in my early twenties and she was in mid-stage Parkinson's. I would hear her telling my uncle on the phone half a state away that she would go to bed at night and not want to wake up. I tried for a long time to get her on antidepressants--I begged my mom and aunt, her legal guardians, to at least take her to a doctor for it, but they told me it would just mess with her Parkinson's medication and to this day I don't know if they ever talked to anyone about it.

Ultimately what helped was when I went back to college and she moved in with a retired couple who wanted to rent out a room. They had four little dogs that she loved like grandbabies and the man was home most of the day to chat with her or fix her snack or just watch movies with her. She was still depressed but at least functional and could enjoy herself a little bit before she had the stroke that ultimately took her away from us.

It's hard to think about because I see things all the time like "Dammit Dolls" or iPod therapy and wonder, what if I tried that with her? But that doesn't do anyone any good. At the end of the day you just have to live with the fact that you can't will her into happiness any more than she can will herself. When you try something that doesn't work it's sad, but it is a little freeing to remember that.
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Have you considered going back to the Dr. who prescribed the meds and explain that the side effects were too much for your mom? Maybe there's something else the Dr. can try.

You asked how you can make her happy. Unfortunately you can't. There's nothing you can do to cure her depression. You have no more power over the depression than you would if she had heart disease. Depression is an illness that needs to be treated. There's more to it than finding something that makes your mom happy. Don't put that pressure on yourself.
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Rinny, as to the calls to the bank and other tasks with steps that are repetitive in nature...you could try writing down each specific step, such as:

1. Call bank at 800 - xxx - xxxx.

2. Press 1 on telephone keypad to get info on balance.

3. Enter account number...and so on.

Be very specific, and go over it with her a few times; help her build her confidence in being able to do this.

Program her phone for speed dial and print out a list of the speed dial numbers and contacts. I usually put 911 first, then myself as second, and so on.

I can't imagine how much anxiety and fear your mother must feel, as if her faculties and abilities are slipping away and there's nothing she can do about it.

As to long term depression, I don't know of anyone's who's experienced it, nor do I have experience with specific medicines. But I always like to try safer remedies first. What did she used to do that she enjoyed? What kind of activities did she like? Does music soothe her?

If she likes animals, are there any neighbors who walk their dogs and would stop by for a visit? Would going to a pet store to see animals help, even if she doesn't want to go outside? Actually, getting outside now that the weather is nicer would probably be very good for her.

However, if she feels too sick to leave the house, perhaps there's something physical going on - might even be related to the new meds. Could you ask her doctor to script for home care? At least a few visits by a nurse could help determine if there are physical issues to address.

And if the meds seem to be contributing to memory and ability loss, ask about trying a different med.
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