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I have been caring for my grandmother for the last 4 years. She has been battling cognitive dementia. Her short term memory is declining rapidly. She just recently moved in with my husband and I, until I can figure out what to do. My mom is not in the position and doesn’t really want the responsibility to care for her. I took control of the primary care giver. I am unable to care for my grandmother full time, because I work full time. What should I do?

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Britt93, please try to not feel guilty...you have nothing to feel guilty about. For some problems there are just no satisfactory solutions. Your gramma needs more care than anyone is able to provide but there are options. Picking the best options and helping her is the most anyone can do. No one is obligated to provide forever care to any of their LOs. Not providing hands-on care does NOT mean you don't love her.

Who is gramma's PoA? This is the person who has the legal authority to make care decisions on your gramma's behalf.

What are your gramma's financial resources? In-home caregivers can be hired by her PoA and paid for from her own assets.

If she doesn't have an assigned PoA then the options are to pursue guardianship through the courts (this can cost thousands + time + effort) in order to manage her care, or the county can pursue guardianship, in which case gramma and family lose all control over where she lives, what medical care she receives and are permanently locked out of all her accounts and assets until she passes.

If she has assets, she can go to adult day care until such a point where she requires the full-time support and safety of a care facility.

If she doesn't have assets but needs LTC or MC then someone can help her apply for Medicaid and hopefully she will qualify. Some states' Medicaid will pay for some or all of AL so you will need to check what your state offers. I wish you all the best in finding what works for her, and peace in your heart that gramma is loved and you are doing everything you can to protect her.
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Britt93 Aug 2020
My mom is primary on PoA and I’m secondary
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I think guilt is the wrong word and I fight it on the forum all the time. Semantic matter. You are not a felon. You don't do injury to people for joy. You are not evil. You have nothing to feel guilty about.
To me it is grief pure and simple. There is honestly no real answer to what happens to us when we are old and helpless and it is loss after loss after loss, but certainly the answer is not that our children and our grandchildren give up their lives for us. Do the best you can to get grandma placed in the best place she can afford, and do the best you can to support her. She might have a short time only, but she might have many years. You don't mention her age. We have a caregiver caring for a 101 year old parent.
You are doing your best. You have a limitation. My own limitations would not have seen your Grandmother through four years. I could never take on this care. I was a nurse and I loved it very much, but it was one shift, and at the end of my career one shift three times a week. Well paid. I never was special at being a parent, I think, but I would have failed completely at in home care for an elder.
You are doing the best you can. This is your one life, imho. You won't get another. You need to live it.
So sorry for the grief. To me guilt is a way to suggest that everything can be fixed. It can't. It is a way to stop the mourning and the moving forward. To me, guilt should have no entry in this.
I remember the brief shining moment when my beloved bro was diagnosed with probable early Lewy's Dementia, that I stood and said "If you were any kind of person at all, you would move in with this man who was the best man you ever knew and you would take care of him." As I said. Shining moment. Very brief.
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Britt93 Aug 2020
Thank you!
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Totally agree with Alva Deer. Think of the senior living facility as a safe place for your grandmother. When my father in law started to regularly wander off from home, in the late afternoon in the middle of winter, we knew it was essential that he be moved to a facility specialising in dementia patients, for his own safety. I was so worried that he would get lost on one of his walks and die of exposure in the cold evenings, and just wanted him to be safe and treated with respect and dignity. Now it sounds like your grandmother isn’t doing this, but there will be other behaviours that will make caring for her a real difficulty for you. Placing her in a safe and caring environment suitable to her condition is an act of love and kindness on your part and you have nothing to feel guilty about.
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Don't look at it as you failing, look at it that this is in the best interest in the person you need to place. It is very difficult to make this choice, but, you must act in the best interests of the person you are placing.
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I had this problem, my mom lives with me since 2011, check with the Department of Aging and Disability in your state under Community Base Assistances CBA program. The state pays for full time caregiver, while I work and provides respite hours as well.

My mom was in a nursing home for a year and it was horrible, so I took her out. You can put your grandma in, but visit often and at different times to see if she is being taken care of. Sometimes guilt only means that you care, but recognize your limitations too.
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There comes a time when we have to face the reality of a situation and not just sit and wish things were different. Because they aren’t. Yes it is sad that this is the choice to be made, but she will get care that you are unable to provide. You love her and that is evident because of what you call "guilt" (I prefer to say "wanting things to be otherwise"). Guilt implies you did something wrong but you aren’t. You do the best you can with love. That’s all any of us can do...we are not perfect humans.
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deblwalker Aug 2020
Well said. My daughter almost daily has to remind me that my Mother is in a safe place where they ensure she takes her medicines timely, eats well and doesn't fall. While she was home with my care and caregivers, she was falling at least three times a week (often more). It truly is sad given the current COVID crisis, but a reminder that nursing care centers give the care to our loved ones that we ourselves are unable to.
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My mom had dementia from a traumatic brain injury. She lived with my dad for five years until her paranoia and wandering was beyond exhausting and too much to handle. I cried interviewing memory care facilities. We found one nearby that smelled clean, had cheerful carers, and nice activities and a garden. Then I felt like the worst daughter and my dad like the worst husband ever. We moved her in and within a week she was at home at “college” and “helping”. Oh my gosh. My dad could be a husband again, not a nursemaid, sitting and holding her hand at activities. I could be a daughter and do the same. I had cried for nothing. It was AMAZING. Sure there were moments and frustrations but she was with people who understood what she needed mostly and had compassion. I recommend It if the parent can afford it. Also we were able to get tax deductions for my dad as it was medically necessary. I had cried for five years. Now visiting I knew she was safe and content overall. She had aphasia so that made it very hard. But I agree with others. It’s not guilt as much as extreme grief. When she passed we both felt so glad we had done everything we could to ensure she was safe and loved all her life. Plus my dad didn’t have the heart attack which was likely with her at home. They had two years with him visiting almost daily and doing the exercises art and music together!!
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Sremember a shame that your mom dumped all the responsibility off on you.

What goes around comes around and she'll be getting to the age of her mom soon enough and will need help.

The best solution fir your Grandmother is to not go in to a Senior Living/Nursing Home, especially at this time with the Covid.

The Best solution for Grandma is to continue living with a loved one.

Why don't you ask your mom to help watch her, take turns letting her stay with your mom, divide the Care between you and your mom.

Are you able to have a Care Giver to watch her while you're at work?

Does Grandma have the funds to hire 24 7 Care?

Dit's Granma have a house she could sell to help out with finances?
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IsntEasy Aug 2020
"Senior Living" and "Nursing Home" are two very different things. I disagree that the "best solution for Grandma is to continue living with a loved one." Would you like to be babysat or live an engaged life with lots of social interaction?
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This one I hesitate to get into bc of the cultural difference- your very kind to have her life with you since it sounds like she is a nice person ( seen way too many posts on jerk seniors to be honest and have known a couple personally) assisted living is a relatively recent concept birthed by upper middle class socioeconomic Caucasian American culture, it’s not something that many other cultures do unless the person has a true medical need to be in a facility, my own mil was the sweetest kindest selfless person despite her medical condition and having a moderate degree of pain and being uncomfortable physically she never acted like a jerk to anyone around her, in fact she was always concerned how we were doing, very loving woman, it was never a consideration to place her anywhere. Now that she passed away her husband is being cared for and lives with one of his sons - it’s never been on the radar about assistted living - he was in a nursing facility for a brief time when he had true medical issues that couldn’t be managed at home. He also does have dementia but it’s something that family helps him with. I feel for you bc your young and have to work, can you have another relative (s) can cover for you when your at work? I know on this forum where the culture is mostly different than mine this probably won’t be a popular belief but my own views hopefully are respected as much as anyone even if they disagree and I think it’s helpful to have other perspectives rather than the lock step automatic “time to put them in assisted living” approach, I have known a couple people who automatically placed their senior parent in AL despite them not even having dementia it’s just like the upper class white thing to do I guess for many, I am totally empathetic to your situation though and it definitely seems like you love and care about her so I wanted to suggest the idea we don’t need many times to go towards an al, if you can have a small network so to speak of one or two relatives or friends who can help her whike your at work if you want her to he able to stay with you, there can be a great benefit and love of inter generational living. The only times I would say placing a relative is the only or best option is for a true medical need that cannot he managed at home OR seniors who engage in verbally abusive malicious behavior towards those who care for them as shown many times in this forum. I hope you let us know how it goes with your grandma and that you can find a way to have her continue to be with you ( if that’s what you want with the right plan of another person helping when you work type of thing
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phalen1 Aug 2020
Sarah, in the current climate, or any climate, I find this racist, sorry
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My MIL refused to move in with us or my BIL and she lives in Hawaii while we all live on mainland USA. She currently has 2 live-in caretakers that split shifts for day and night to care for her. Prior to COVID, she went to an adult day program and only needed 1 caretaker. All of this is paid for by FIL's life insurance (he passed a couple of years ago) and steadily liquidating their assets.

I suggest doing a little research in your area.

Do you have the support of family, friends, a community of faith...? Often those who know and love you will step up to help while you are at work.

Are there home health care agencies or adult day programs? Sometimes family and friends are not available to cover a loved one's care while you work. Paid help can cover those times. It is less expensive that fulltime residential care.

Does Gram do ok but needs a little assistance with her medications? Is living with you putting a strain on your marriage? Assisted living apartment may be a solution. This is more expensive than home health care but less expensive than full care residential facility.

Does Gram need lots of hands-on care? Does her behavior, especially night time habits, make it difficult to meet your own needs or disrupt relationships with your spouse? It is hard to accept, but most dementia sufferers get to a point where they need round the clock, awake caregivers and lots of hands-on care. A few people with a huge network of family and friends can do this without paid help. Usually, full time memory care placement is needed at this time.
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Why would you feel guilty about giving your grandmother a better life?

At an assisted living or memory care community, her needs will be met by people who are trained in dementia care. Her participation in engaging activities will be tracked and encouraged. She will have the opportunity to connect with other residents who will meet her where she is right now cognitively, not mourn for who she used to be.

Get a clear picture of your grandmother's finances and start shopping for and AL or Memory Care community. If that's not financially possible, call your county's office for aging and find out what programs are available that could pay for home care, day care, etc. If your grandmother is 'on the bubble' financially, it's worth a few hundred dollars to consult with an elder law attorney to plan a spend down and look at what assets can be shielded.
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Why on earth do you feel guilty? She has dementia and it will get worse. You have a job and your mother doesn't want to be the caretaker. You must take care of YOU first. You can't do it all. Do not keep her at home if she has dementia. That means you must put her into a facility where she will be cared for and you can have a normal life. Don't wait and don't be guilty - you are doing the most sensible act.
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You just have to ask yourself 'can I take care of her properly if no one else in the family is going to help me?'. If the answer is no, you have nothing to be guilty about. If you work full time, someone has to be in the home with her. If there is no someone to do that, you really have no choice because your primary concern should be you want her safe 24/7 and her needs taken care of. Failing to do that should create the guilt, not placing her where she is safe.

Then go visit and visit often. Pay attention to her care. Be an advocate for her to ensure she is not neglected. When you can say that you did everything to help her and keep her from harm, there may be regret that you couldn't do it yourself, but there should be no guilt.
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Well, if you can sort through the nonsense here in the comments to find the pearls of wisdom, then you're all set. Blanket statements saying it's 'always' best for a loved one to live with a family member are flat out wrong. One size never fits all in life. Even with clothing, have you noticed that? :)

Dementia normally reaches a point where in home care becomes literally impossible. When grandma is smearing her feces all over the bathroom walls, you will then understand why. Memory Care ALFs hire people to care for these residents 24/7, in a safe environment where they're fed, entertained, bathed, and allowed to socialize with people their own age who are suffering the same issues as they are. It's a win-win situation for all concerned, and nothing you should feel guilty about. My mother is in a Memory Care ALF herself and she's alive to this day BECAUSE she's there and getting such a high level of care. I have no doubt about it at all.

Others here on the forum who feel the need to be martyrs and like to tell the rest of us why we're 'wrong' by placing our loved one in residential care may haven't even cared for a loved one, ever. Remember; this is the internet and wherever anonymity is at play, liars roam free to say whatever they want. And to lay on the guilt, nice and thick. We have a few who come back to leave the same guilt ridden comments over and over again, like broken records. Just take what you like and leave the rest, okay?

You work full time and have enough on your plate without adding to it. 4 years is enough and I applaud you for all you've done to date. Placing grandma in care does not mean you'll never see her again, or that your role is finished. It isn't. You'll still have plenty to do for her as a granddaughter again instead of a full time care giver.

Best of luck!
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Sarah3 Aug 2020
I feel this is disrespectful of the fact there’s other cultures where things have a different perspective- I was hesitant to post that bc on the Internet some like karsten remarked are apparently so fragile they cannot respectfully allow other views or cultures to weigh in.
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You should NOT feel guilty of having to place her. You are doing what's best for her. If you are working and you have to hire someone to come in and stay with her until you get home, then she's not really with family anyway. Just once she's placed check on her as much as you can. She may not remember the visits but the staff will. Be as kind as you can to the staff.
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As others have indicated, guilt should only come into play when you have done something wrong. Wanting to ensure your grandmother is well cared for is a GOOD thing! Being young and needing to work, you can't be there for her all the time. You could explore getting help to come in, but it really is dependent on whether this can be accomplished without impinging on your own life and needs. Having to care for her outside working hours can be a major detriment to your own health and well being. If you became disabled, then what?

Sometimes finding a good, safe environment IS the best solution for everyone. Explore all options and abilities. Clearly your mother wants nothing to do with all this. I would highly suggest that you recommend she, in writing, relinquishes her POA. Since you are 2nd, this would enable you to take over all the necessary details. If your mother is willing to manage finances, sign paperwork, etc, generally being the overseer of all grandmother's needs without providing the actual care, then work with her. Many people don't understand that having POA means this is what you do - you can manage finances, make some decisions for her that she would have wanted and oversee everything. Having POA does NOT mean you must provide the care. If one can and wants to, there is no issue with that, but no one needs POA to do that!

Others have noted that giving over the care to a facility was a huge benefit - it allows you to be the loving granddaughter again, who advocates for her grandma and sees to it that she gets quality care, but also gets to have your time and love! It lets you spend quality time with her, rather than becoming her nursemaid and maybe eventually begrudging the care. Some with dementia even come to dislike and abuse the LO caring for them. Letting others do the hands-on in no way reflects badly on you - it is a sign of love that you want what is best for her!!

Although I was on the cusp of forced retirement when my mother needed someone to oversee everything (dementia, she had been living alone), I could only do so much. Take her shopping, or provide supplies, take her to appointments, etc. I tried bringing in aides, only for 1hr/day M-F to check on her and see that she took her meds from a locked dispenser. As her needs increased, the days/times would be increased. However, this wasn't to be. Less than 2 months went by before she refused to let them in. I was not able, physically, to take her in, so I did the next best thing - I found a VERY nice place for her, I manage everything for her that the facility doesn't cover, visit with her, etc. It allows me to keep some sanity, not injure myself (or her) and ensures she has the best care! Guilt would have come into play if I had neglected to see to her needs. I have NO guilt for being unable to provide the hands-on care she needs. I knew I would not be able to do all that is needed. THEY can do so much more than I ever could!

So, explore all your options. In-home care, day-care, AL/MC. You'll need to be aware of all her assets/finances to know what she can afford. If she doesn't have assets and/or low income, you will need help applying for Medicaid. Some funds are available for in-home care. Some places, but not many, do accept Medicaid. Finances will be a very important need in making decisions about her future care. You may need to consult with EC atty.

Focus on doing the best you can for your grandmother and leave the guilt by the wayside. You are a caring loving granddaughter and should not feel guilty!
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Dear "Britt93,"

You already have been caring for your grandmother for the last 4 years, your mom as you say is not in the position and really doesn't want the responsibility to care for her. I'd really be curious if your mom feels any guilt because if she doesn't, why should you? You've already shown what a responsible person you are - you have a full time job, you take care of your husband and your grandmother.

My parents never took care of their parents and my husband's parents didn't take care of their parents. Although, with my FIL he already had lost his own dad when he was 12. But, my husband and his older sister took care of their mom's mother and my husband was the one who found her when she passed away without anyone's knowledge.

When my dad passed away in 2004, my mom was 79. I ran back and forth from our house to hers for ten years. I couldn't do it anymore. I tried but, it was no longer practical especially when my mom was getting lost while driving, went missing one night where it ended up being a police situation and I could see she was no longer handling her finances meticulously. She wanted to stay in her house for the rest of her life. I felt guilty for moving her out of the home we lived in since 1968. She had been diagnosed with Alzheimer's in 2014 and we moved her into an ALF in early 2015. It would be the beginning of many, many hard decisions I would have to make.

She is now in a different facility in their memory care unit. There is no way I would ever be able to give her the type of ongoing, round the clock care that she needs. I have no problem admitting that I am not good at the physical aspects of caregiving. I do all the other tasks on my own and of course my husband pitches in. I'm an only child so there is no one to share in the responsibilities. She is 95 and has five siblings who are still alive but, who all live in other states and do not have anything to do with her care. Also, they are not a support system for us.

So I look at the guilt aspect in two ways - 1) I really am still my mom's caregiver it's just now she "lives" somewhere else but, I still do a lot of the things I did before - just not the meals, laundry, medication handling and the physical components of caregiving and 2)honestly, I'm so busy with the rest of the caregiving responsibilities that I actually find I don't even have the time to "feel guilty" so it's not like I spend all my time when I don't have hands-on caregiving to do wallowing in guilt.


In essence, it take all parties to make an adjustment which is true of any type of change - good or bad. I sure hope you can come to a place where you realize it's ok to turn over the responsibility to a good care facility. I've watched my life pass by quickly from the time I started the caregiving journey at the age of 41 to now nearing 58. You just have to ask yourself if you want to do the same. I wish you and your family the best as you try and make a decision that will work for everyone.
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I dont know if you necessarily can. Obviously you have done all you can and it sounds like it has come to the point where you no longer can provide the care she needs without compromising you and your husband.

Even your mother, her daughter will not help

But while all that is true, you can tell yourself it over and over and it will not eradicate all guilt, in the short term anyways . I think over time you will be able to fully see you did all you could and you did the right thing by putting her in a home

But while it would be nice to get rid of the guilt, as an emotion you cannot logic it away.
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Sarah3 Aug 2020
Thank you for your support and reminder to some others here who responded to my sharing of my culture with hate and bullying that we should respect others cultures and the differences in caregiving rather than being so fragile they can’t have a respectful exchange. I also received some private messages supporting me and sharing their disappointment in the spiteful responses to me openly sharing the different perspectives that come w other cultures
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Imho, you were a stellar caregiver to your grandmother! I used the past tense because it's very clear that it was never your responsibility to care for your grandmother from the onset. Let alone that your mother is not in the position and doesn't want the responsibility is almost a moot point because your grandmother needs the care of a medial professional in a facility. You are to be praised. :)
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This decision is one of the hardest things that most of us will ever have to do.

I bawled like a baby when I had to place my dad, for a month every time I visited, it was so difficult. So bring lots of Kleenex when you go visit her.

I got through it because it was the best solution for his needs and care to be met. It sounds like it is the same with your grandma.

You will still care give for her. It will just not be the hands on 24/7/365 that you have been doing. You will make sure that she has enrichment activities with you, you will bring her favorite treats and you will make her feel loved in the moment. Then you will go home to your family knowing that she has caregivers that are well rested and available 24/7/365 to ensure that she is okay.

Learn to pick your battles with a facility. They won't respond just like you, but most of them really do the best they can and do take reasonably good care of our loved ones. So be prepared to adjust to her having to wait for her issues to be addressed and learn that she is not going to be happy about being there, most importantly, learn to put the biggest smile on for her and act as though it is the best place in the world to be, this helps their perception of their new home. Speak up if you see something wrong and follow your gut, if it feels wrong check it out, but never let her see or know what you are doing behind the scenes.

Remember that caregiving is a thankless, hard job, so smile to her caregivers, say hello and ask about them if they have a moment. Do something special that tells them how much you appreciate all they do for her. Homemade goodies are always appreciated and they say so very much to the people that receive them. Remember that you wouldn't want to only be spoken to when someone has a complaint, so try to keep your balance in dealing with any concerns.

I have had 3 grandma's that have ended up in care and I know how hard it is to see them fail. I found that just loving them in the moment and doing things that brought laughter was some of the best times ever. Best of luck finding those moments with your grandma.
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NobodyGetsIt Aug 2020
Dear "Isthisrealyreal,"

Your comments were good reminders as well as reassuring that I've been on the right track over the past five years with my mom being in two different care facilities.

Just like you said, I've learned to pick my battles when it comes to dealing with the facilities. Also, I've always been thankful and appreciative to the staff doesn't matter what position they hold - receptionist, dining room staff, maintenance man etc. But, I also do stand up for my mom when necessary. On those occasions, I've tried to let them know I understand their position to the best of my ability but, they need to understand where I'm coming from as my mom's advocate.

Thanks again, for the reminders!
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Find a nice or comfortable place near you. Look on internet. Look at the front doors. Are homes one story with permanent wheel chair ramps? Take down the addresses, or walk up and ask if it is a facility. Or, take address and look online.
Talk with people in geriatric stores, hospitals, adult day cares..
I literally saw one, walked up, knocked on door.. Ron was such a sweetheart. It took him and me 6 months to convince I was doing the right thing...
Pray.. pray pray... ask for guidance, and the path to where mom should be...
do ask quesitons. Don't just fixate on one spot... look at a few,, walk in unannounced.. SURPRISE !!!

What does the place look like? what does it smell like, are people in their rooms or on couches watching tv with others?
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DO NOT FEEL GUILTY... KEEP FAMILY CLOSE
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Guilt is the Light/conscience within telling us 'you can do better than this".
Listen to it.
There is no rush.
Give it a few days. Healthy meals, warm epsom salt baths & deep sleeps for you
Let your subconscious work on a solution that sits comfortable with you.

What lasts longer... Feeling deprived?...or feeling guilty?

Feeling guilty every single time.

Sage tea is wonderful for clearing the mind of the dementia sufferer..
You can buy it in tea bags & fresh organic in boxes at trader joes.
I put 3 or 4 tea bags & a tablespoon of fresh sage into a 4 or 5 cup tea pot. Pour boiling distilled water & let it sit Serve with honey & a dash of fresh lemon
My grandfather resisted at first...Now i leave the pot out while im at work, & he will have drunk it all by the time i get home. It brings back his normal witty self...even if only for a while :)
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When you know that you have done all you can do.
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