What can I do with a person with advanced dementia?

It sounds like you're doing a terrific job! If she's still able to, something that I did with my Dad was to put family pics on one of those frames that change pictures every few seconds and just go thru them with him and tell him who they are and whatt was going on during that pic. He remembered more than I thought he would and even if he couldn't talk alot, he smiled!

RR, my heart sank reading the 'quit going' recommendation, too; but this is a school of thought, and a point of view that - I suppose - deserves as much respect as any other. Here in the UK a high-profile sports personality went public recently about how he'd chickened out of visiting his father (I think it was his father); which to be frank I did despise him for, but mainly because he hadn't supported his mother who continued to visit. He wasn't proud of it, but he was honest about his feelings - which I think is the point. You have to know what you can handle, then do your best to meet the challenges.

But we can still wish for people - especially big tough guys like him - to man up a bit..!

Rachele, you are doing very appropriate things with your mother. You are feeling very appropriate feelings, too. You have suffered great losses, and there are more to come.

If you are a reader and can take comfort from books, I highly recommend "Loving Someone Who Has Dementia" by Pauline Boss. This therapist talks about "ambiguous loss" -- the fact that we mourn for our loved ones while they are still living. Their bodies are there but their minds and personalities are not completely there.

Hugs to you. Keep hugging Mom!

Quit going? So just let your parent suffer alone with no love? omg you are kidding! It doesnt matter if they know you or not. In fact no one wants to be alone, they are lonely, confused, depressed and so scared! They need touching and loving! The NH's dont have time for comforting them. I am so upset to think someone would do that. We get what we give, thats all I can say, and deservingly so!

I have been taking care of my mother's older sister, who is 84, for two and a half years now. She has incontinence and has many memory problems. She takes just one medication, a diuretic. She is skin and bones and is approx. 5'7". I bought her a three-wheeled Winnie Walker six months after I went to Porland, OR from my home in Florida to get her. She was a real opinionated, know-it-all, firm in her beliefs type lady. To the point of alienating all of her family members. I am the only one that ever spent any time with her. She has been estranged from my sweet mother for many, many years. I read all of your posts on what you are going through and it makes me realize I have easy.....just cleaning feces off of her butt twice a day and wherever else she gets it. Just had to put her in the shower because she was so messed up. People with incontinence are in a constant state of denial, too. Never admit your Depends are soiled! Ugh. She will probably live longer than I will.

I would not go to the nursing home so often to see my family member if he/she no longer recognized me and they were well taken care of. Be at peace that you have done all that you could and that she/he no longer "needs" the relationship you once had.

I would quit going. That simple. Take your life back. You have done all that you can. She does not know you. Be at peace with the fact that she no longer "needs" the relationship you once had with her.

During times of high antibiotic-use and diabetes, we often get a bad fungal infection in the tummy that can spread throughout the body. I know it happened to one of my grandmothers in her last 3 years, and everyone brushed it off.
I have experienced it, and it gives you severe brain-fog. I couldnt remember why I walked into a room and it made my eye glasses useless on some days.
With this said, I also have the grandmother who lives with me tested for it every now and then when her dementia gets stronger than usual and recedes on some days.
Just wonder if checking for and treating this might take the edge off the symptoms.

Then give yourself a break and don't visit as often. You will need to start pulling away anyway because she will be gone soon. Start preparing for the inevitable. Don't get yourself depressed because you will need all the strength you can muster when she passes. I've been there already...

Please continue to do what your doing, you'll never regret it later. I used to visit my father daily, and he had severe dementia. Most times I never thought he even knew I was there, but I was told by one of his visitors once that when he saw me through the window walking in, he told them "Here she is" and his face lit up. That was enough to make me want to continue to go as much as possible. Take your mother outside as much as possible, bundle her up when its chilly and still take her out. I think looking around outside at the different scenes, not at the four walls, is the best thing for them mentally.

Rachele,

You are living through one of life's most insidious diseases and my heart breaks for you. I lost my mother 4 years ago and I still beat myself up with the I wish I had syndrome. In our home, we cared for three of our parents until their final days. All had Alzheimer’s and accompanying health issues that were very unpleasant and difficult. One thing I found worked wonderfully, until my mother was beyond comprehending, was playing Bananagrams. She could play at her own pace while my mind was still stimulated. That is often very tricky when you find yourself repeating and answering the same questions every two minutes. I actually timed it once and my mother asked me the same question 12 times in 15 minutes. We did all the towel folding, family picture reviewing, going for rides and getting an ice cream cone and everything I could find to keep her feeling valuable and both of us stimulated. You start feeling brain drained and question your own sanity and thought processes after just so long too.

From you last statement about what topic to list your inquiry, I have the feeling you are struggling and hurting. You sound like a beautiful, loving and caring daughter. Your mother, although she may no longer have the capacity to let you know, I am certain feels and appreciates your devotion and love. Be gentle with yourself as well as your mother. Often the only thing left they can understand is the gentle touch of your hand holding theirs, a soft caress over their tired face and soothing kiss on a confused brow or your arms around them in comfort and love letting them know in their fear and confusion they are safe and someone cares.

Sorry this is long, but I want you to know you are not alone. What you, and everyone on this board, are going through is hard, so very, very hard. I understand, for I too have been there.

My mother-in-law and mother lived with us until the final two weeks of their lives and my father-in-law passed away here, as well. At the same time, we also cared for our infant grandson. I slept two hours a night for years because my mother was up at all hours trying to go to imagined places, picking up a brother who had died 12 years earlier and going to see her parents who had been gone for over 20 years. We tried every thing imaginable from music to medications to grant her some peace from the torment of activities her mind told she needed to attend to. My father-in-law and mother-in-law also demanded 24-hour care in the final years of their lives. I was totally burned out and exhausted, but putting any of them anywhere else was more than either my husband or I could conceive of doing.

However, two days before Thanksgiving when there was absolutely no way of getting through to my mother anymore, I was forced to make the most painful and heart wrenching decision of my life. She no longer recognized me and I couldn’t control her. She was fighting to get out of bed, yet too weak to stand and I feared she would hurt herself. I was facing the holiday and houseguests. With deep reluctance and extreme guilt and hurt, I had to call the hospice nurse to come and she told me Mom was beyond my care, so we took her to the Hospice House. She not only had Alzheimer’s, but was suffering with failing kidneys. The next day she fell into a coma and sadly, never got up again. My son and daughter-in-law were coming the next day with my two young grandchildren to spend the Thanksgiving weekend. Plus, we were also caring for our 6 month old grandson and my aged father-in-law was still alive and he was becoming more and more dependant, as well. I had every intention of bringing her back home after the holiday because I wanted her with us when the end came.

I was stressed, exhausted and at my wits end. I knew my mother would not want her grandson and young great-grandchildren to have the memory of her the way she was and I didn’t want her condition to frighten my grandchildren either. They live in another state and would visit as often as possible, but Mom had both mentally and physically deteriorated significantly in the two months since they last saw her when she could still talk and recognize them. I felt it was best the wonderful memories of years before remained in their minds vs the illogical, wandering shell she had become. I gave my son and daughter-in-law the option of visiting her, they elected to keep the beautiful memories and not be left with how they would see her now. All her life my mother said she didn’t want to be a burden and I know she wouldn’t have wanted the children to see her as she had become, it wouldn’t have benefitted anyone or honored her wishes.

When they were here two months earlier, we thought we would lose her one day. The hospice nurse came out and told us to prepare for the worst. We all gathered in her bed to say our final good-byes. Miraculously, she perked back up and was at the dinner table that evening. I knew that wasn’t going to be the case this time. So, it was a positive thing they had said their good-byes, including my mother, and felt the love and warmth together that day.

The following week a very close aunt passed away and it was important I attend her funeral, something I knew would be impossible if Mom were here, so elected to leave her in the very caring and competent hands of the hospice staff. I did spend time every day with Mom, although she didn’t realize we were there. Even bringing our 6 month old grandson, whom she adored, in to see and snuggle with her did not get a response. I laid with her, cuddled her and told her I loved her. All the while my heart was breaking seeing her like this and feeling such overwhelming guilt for not having her home with us.

Sadly, after the funeral, Mom had reached the final hours of her life and passed away before we could bring her home. To this day, I wonder if I was selfish not having her with us those last two weeks, but then I tell myself I know that is how she would have wanted it. Life had to go on and I couldn’t have done anymore than I did. My children, grandchildren and relatives deserved my love and attention too, something I couldn’t have done spending 24 hours a day caring for Mom. I had Thanksgiving dinner to prepare and wanted to spend quality time with them as well.

It is still hard today because I feel in the final days, I wasn’t with her 24 hours and she died without us at her side. Yet, my father-in-law died here two years ago and, in reality, I’m not sure it was all that different. He quietly slipped away one evening when we stepped out to the dining room for dinner. I wonder, when our loved ones reach the point of total mental disconnection in preparation of moving on, if they know where they are, only that they were deeply, deeply loved all their lives and we cared for them the very best we could. My husband and I gave up our lives so they could be surrounded by love and family. I know they appreciated all we did for them by keeping them with us.

Yet, what I truly want to say is no matter how much you do, how much you care, how much you give of yourself, in the end, you will still ask yourself could I and should I have done more? I would beat myself up through total and utter exhaustion trying to do what I could when they were alive and continued beating myself after they died. Sometimes, the guilt is compounded by others who offer their suggestions, and condemnations, even though they are on the periphery. My point is, you do the very best you possibly can at the time and as difficult, almost as impossible, as it is, you need to give yourself credit and go easy on the chastising. It is especially hard once you have said that final good-bye and you have had time to recover and rest. The bad memories of horrible health, sleepless nights, cleaning up accidents, not sure you can live through another minute, let alone another day, and wondering if you will ever be normal again, gradually slip away and you are, gratefully, left remembering the good times of who they were before everyone’s life so drastically changed. That is when you wish you could have just one more hug, just one more I love you and wish things could have been different. Monday mornings always make the decisions seem simple.

Go easy on yourself. Believe me, we ALL make mistakes and wish for do-over’s. We ALL have feelings we wish we didn’t at times. If we are honest, deep down, there are even those moments no one mentions when we wish it would all end and we could have our lives back. The mental and physical exhaustion of the caregiver is overwhelming and there is very, very little relief. You push and push and push trying to make them comfortable and happy, giving every ounce of love you have, even if it is imperfect. I honestly believe monies should be established giving relief and allowing caregivers, who shoulder the 24 hour a day responsibility, time away every week for the desperately needed R&R they so richly deserve.

Eventually, the day will come, when we will have said our final good-bye and it is over. Once we are rested, then the guilt sets in again. When I was with my mother, I would try to make myself truly see the struggles she was going through and realize there was no hope of her ever getting better, only continuing to watch her slide down the slippery slope of Dementia Mountain, growing weaker and weaker with each passing day. I pulled her away from deaths door four times, because I never wanted the time to come when she would leave. I wanted to keep her healthy and vibrant forever. Seeing her frail and failing was not an option I wanted to face. The times she said she was ready to go, I said no and fought for her to stay, maybe letting go is the kindness thing we can and need to do. Finally, I forced myself see how difficult her life had become and what a struggle it was for her. Once I accepted that truth, there were days I prayed our parents could be granted the peace of passing on instead of enduring the torturous realities of Alzheimer’s.

Today, I am holding and, thankfully, granted the memory of my mother as she was before the ravages of Alzheimer’s set in and stole her from me. It was the mother I had known and loved for 95 years I so desperately tried to keep with me. None of us want to be left with overwhelming loss and guilt when our loved ones final day comes, but seems no matter what we do, we still question ourselves. We all love our parents and don’t want to be without them, however, medical science, at times, has the ability to keep them alive when maybe, even they, would like to be allowed to leave this life. When the guilt begins to wash over me, I look at some of the pictures we took and listen to the recordings, then I realize her time had come and, even though the loss will forever be there, it does absolve some of the self-reproach. Looking back, I carry the same feelings for all four of our parents. I guess that is what caring and loving boils down to in the end. You love them so much you do the best you can, but wish you could have done better.

So, what I am truly trying to say is, do the best within your power at the time. Don’t beat yourself up for not being perfect or able to do more, don’t beat yourself up because you are too exhausted to do everything you want to or feel you should, don’t listen to others who tell you what you are doing isn’t what they would do when they aren’t even helping, don’t listen to that little voice inside telling you that you aren’t doing enough, and above all, don’t miss the milestones in the lives of the rest of the family, for they count too. Do take time for yourself, family and loved ones who also need you. No matter how deeply you love the person you are caring for, remember you need to be strong to enjoy the rest of your life. Your parents have lived their lives and you deserve to live yours and remain healthy. Whether in your home, their home or care facility, if you genuinely share your love with them, they know it and that gives them the security and joy they need.

Life does go on and you will look back later with so many mixed feelings. That is normal because you loved so deeply and so much. You are doing the best you can under incredibly trying and heart wrenching circumstances. You are human, you are flawed, there is only so much you can do, there is so much that is not in your hands or within your control, a higher power is making those decisions. Always remember and keep reminding yourself, you are a beautiful person and you need to love yourself and go easy on the guilt. When I was going through it all I wasn’t sure I would ever see the light of day again and, at times, questioned if I would even survive. Yet I have and my life is beautiful and filled with sunshine once again. My parents are, and always will be, with me in spirit. I feel their love and presence surrounding me every minute of every day. I also know they loved me through all my imperfections because they know I did my very best, no matter how inadequate. And in the end, that is truly what matters……….you did the best you could at the time under indescribable circumstances.

I know your mother feels your presence and IMHO you are a wonderful, loving, caring daughter, Rachele. There comes a time when all you can do is hold them and love them because that is all they can still feel or comprehend. I don’t know if my mother knew I was there holding and loving her in the end, but I knew it and that brings me the comfort I hope she felt too. Many times, unspoken love is the greatest blessing for everyone. God bless you, Rachele, and all who read this, my heart and thoughts go out to you and are with you. May you and your mother find peace

I am approaching this stage with my Dad who is in a facility. I've noticed that hardly any of the other relatives get visitors regularly and I imagine this is why. It's just too difficult to go daily and watch the slow decline and try to know how to communicate. Visits do not have to be long, or daily. I live out of town from my parents. I send my dad short letters, cards, pictures, funny jokes. He can still read simple things and loves to get pictures...visual things are still good for him. During visits, just remember that you are making memories FOR THE MOMENT! You are adding to your Mom's day, right now while you are there. Even if she cannot remember, she may have a trigger that something pleasant happened today. Also, even though going is so negative for YOU...remember it is not for HER. She is happy to have most any kind of diversion to the usual routine. My Mom goes daily as she's right there in town. It's hard for her. She also has early dementia, so it is harder and harder for her to focus on DAD's needs, versus her needs, but she believes she must go at least once a day so he doesn't forget her. I try to help her and me, to clarify that going, versus not going, is like being a coordinator of the care. It's a chance to be sure all the right stuff is happening and to ask staff questions about how your Mom is eating, sleeping, what activities are happening for her, and just to know that she appears to be getting cared for properly. I always then focus on Dad and be sure to share hugs, kisses, tell him how much he is loved, and who in the family is asking about him. Sometimes we use my cell phone and call great grandkids or the granddaughters to have them talk awhile. He is to the point where he can't carry on too much of a conversation, but he sure likes to hear their voices. To talk about them, requires showing him a picture of who I am talking about, because the names don't connect all the time. But he is excited to get a visit and to socialize with almost anyone who wants to talk to him. So, for the moments you are there, you give hugs, and share how much you care about your Mom and who else cares about her, look at some pictures, admire her about whatever you can admire etc. It's more for her than you....and it will get stored in there somewhere for her. It changes her day to have you show up, even for 30 minutes...But when it's too stressful, take a break. What if you got some cards and stamps and in between visiting you mailed her a card? Just getting 'mail' is a change in the day for the moment.

My friend went through this her mum was completely brain dead for three years before she died. She went through h*ll and said she only visited once every six weeks as it was too painful.

I agree youre doing all you can and more so yes cut yourself some slack and visit less but dont stop going you would regret that. Forget about your siblings they are going to deal with this in their own way!

PS one more thing... I have learned so much being Moms caregiver and going through all of her stages. I do know for a fact that they have very high senses. If my son and I are arguing in a joking fashion and we get a bit loud she might start to cry. If my husband and I are disgussing something negative, she starts to tear up and hang her head down or just becomes almost non responsive at all to me. I swear they know so much more than we think but cannot express it with words. If you visit your Mom feeling sad she KNOWS she is bad off, you need to go in happy. tell her she has beautiful eyes, or face or etc. I tell my Mom she is healthy as a horse and not to worry about a thing, I will take care of everything. Every time I tell her that, she smiles and sometimes holds out her hand. They know, its so sad but true so try and go in happy, fake yourself out as much as you can, lol and then cry later :0( okay?! Good Luck, its tough I know.

I see my husbands face light up when he "talks" on the phone to a loved one....even if he only makes guttural sounds in response. He LOVES hearing people's voices. I have explained this to people when I call them and ask them to talk to him. Some people find it too hard on them (mostly his son) and refuse to even try. It's so sad.

Rachele, I in the same boat as you but I took my Mom into our home 6 years ago and I am her fulltime caregiver also. I can tell you first hand that your Mom needs you more NOW than ever! Affection is what they need. I think of it this way, Imagine you are confused, blind, cant walk, talk, or hold your urine, what would you want? Affection, touching, reassurance, love, etc. I just sat down after getting Mom up at 7am. I bathed her, dressed and fed her,etc and hoyered her into her recliner 30 mins ago. I held her hand until she fell asleep and just got online to unwind when I saw this post. Please remember to hug and hold your mom as much as you can, help feed her and cream her skin and feet, they love that. Music and lawrence welk dvds are great. My Mom has no idea who I am and can barely see, nor understand what she can see. She has severe dementia and had a cerebrel hemmorage stroke 4 years ago. I thicken her drinks and puree her food and give her ice cream treats sometimes which makes her eyebrows rise with happiness. lol. Sometimes after I bathe and dress her, or when I tuck her in at night she mutters out "I love you" and it makes it all worth it. I dont know what my Mom can and cant understand but I tell her easy to understand stories of what a great Mom she was to me and I get smiles all the time. At night used to tell her I am staying all night with her and she would tell me how good it made her feel, so I still tell her every night, just to make her feel secure.
Talk about spent, I hear you, I hire help but its so hard to find good help out there with experience and loving care ethics. I can get my Mom to laugh with music and make her arms and legs jump sometimes, its priceless. Just give your Mom lots of t i m e and l o v e :0)))))) as they are very scared inside but cannot express it. XO

Your feelings are very normal for your situation. It's hard to watch our Mom's fail. My mother was in a CCRC for the last 10 years of her life and I lived an hour away. I spent every Wednesday with her for those years. At the end she barely recognized me, and we did not talk much - just being with each other seemed to comfort her. We both have/had a deep religious faith which has kept us feeling positive. Take your problems to the Lord in prayer and leave them there. The answer will come to you if have faith that it will. Ask others to pray for you and then remember when you feel there is no hope that those prayers are being said. It gives you courage to keep going. It is amazing what even an hour spent just being quiet and listening to music or watching a funny TV show can do for you. Time outs are absolutely essential! You WILL find your way through the maze! Blessings!

Bless your heart & soul! You are doing a remarkable job. I am amazed by the dignity you give your Mom. It's first class all the way, in my eyes. That's quite a feat considering the illness and things you've mentioned you've seen deteriorate. Here's a golf clap for you! Stand & take a bow for the great work you've done & what you've managed to accomplish. Oh, teach me, my sensei! blou

Rachele,
Thanks for the post. A lot of us are in the same boat. My dad is still more lucid than not, but he doesn't sustain conversation past about 5 sentences. And the conversation has deteriorated for sure - it was very hard to see my brilliant dad lose his sharp edge. He also forgets how to make basic movements - dialing a phone, for example.
Really, your presence is so valuable for your mom. Go visit as often as you can, but please don't beat yourself up if you just have to miss a day..

How can I keep the communication alive?
My husband is rapidly losing his verbal skills. He cannot remember or confuses the most basic names for things. I am guessing what he is trying to say by asking him subject related questions. Most of the time he can give me a yes or no to my questions, but I often see his frustration when he finally just waves his hand and is silent. I continue to discuss with him everything but it seems that most of the time he listens but cannot interpret what I have said. What can I do?

Keep going to see her. Yes, it's hard as nails; my mom is in the same situation and it gets very depressing, very sad. Lots of times I cry the minute I leave the facility on the way to my car.But I keep going.

I do agree with captain: go with only the anticipation of staying for 5-10-15 minutes. I do that now; go every other day for a half hour and it's been easier for me.

Of course you are spent! This is the hardest thing in the world to do, watch a once strong loved one slip away by such slow degrees...it's agonizing. But try, try, try each and everyday to put it out of your mind and make yourself determined to do what you've been doing. Stay for a short visit, do all the things you are doing. Then leave. This is what I've been doing. I still cry alot when I walk to my car but that's ok; it's a good release and then I'm able to return to my family and Carry On.

Rachele, You are doing a wounderful job. Remmember hearing is the very last thing to go on a person. So never stop telling her about your day the family, reading the dear abby section to her, or just telling her your feelings. She is still in there somewhere, and can hear you. Try going less often, to give yourself a break. Talking with a consler just so you can vent can help. And hummor is our best defense. Read her a joke book, if she doesn't laugh at least you will. And touch is very important, even if you hold her hand while reading to her. Belive me she know your there and how much you love her.

Kuddos to you by the way. I had the pleasure of being a volunteer caregiver while living in their community. It's a tough job but can be so fulfilling and I wouldn't trade it for nothing. Sometimes just being there makes a difference

Just curious as to why 3 different facilities

The real problem isn't the visits, it is the anticipation. I know that your mom is never far from your mind. That is normal. Do you crochet? Something like that might help calm you.

I saw my beloved Gram every Sunday. She was the one who decided to keep "the baby" when her daughter came home pregnant at 15; and she's the one who always gave me unconditional love. I learned the best way to enjoy time with her was to bring magazines and look at the pictures together. Usually gardening and decorating magazines. I knew which colors she loved in her home and which flowers she loved in her garden. And I just reminisced out loud as I turned the pages. It was easy on her, no responses necessary. It was easy on me because I had no expectations beyond that precious hug good-bye. Now she's with me always.

You are doing fine! The music , touch of your hand and the special treats are so positive!

I can't imagine there's anything worse than been written off as demented.

Of course you're sad! You've gotten good advice from the community. Don't walk away because you'll regret it later. But do give yourself some slack.

As previously mentioned, shorter visits are okay. Give her affection, touch and the sound of your voice. Bring a treat if she still likes some special foods. She can't show her appreciation and you see her slowly drifting away - that's the ugly nature of the disease.

Acceptance is key. This is not how you want things but it is how it is for now. You can't change that. You are in constant grief and need to give yourself days off and respect for all that you do. If you have a spiritual leader you may get some comfort there or even from a paid counselor who will encourage you to take care of yourself.

Please keep in touch with us because people here understand. They know what you are feeling and how very, very hard it is. No guilt allowed about how you feel - okay? You are doing just the right things. Just do less when you need to.
We're with you,
Carol

i dont think she gives a d*mn about seeing me , its the krispy kreme donut shes looking forward to ..