Losing my dad slowly...

I went through the long goodbye with my dad. By the time he passed I had been through most of the grieving process already. Even when my dad didn't know who i was anymore, he knew i was someone who loved him. If there are any support groups in your area, that would be helpful since you are going through this without siblings. Try to find moments of joy with your dad. Does he like to listen to music from when he was growing up? My dad enjoyed going for car rides and getting ice cream. My heart goes out to you. I am now going through this journey with my mom, although she still knows all of us. Her main issue is hallucinations. Finding this website is a good thing too. I wish id known about it with my dad. Everyone here is going through similar situations. I've gotten a lot of good info and ideas from here. Just keep being the loving daughter you already are and know that you are making a difference in your dad's life and you'll be able to draw a lot of comfort one day when you look back at this time, knowing that you did the best you could. You will also emerge a stronger person. Take care of yourself and know that there are many of us out there going through this together. Hugs

People who haven't walked in your shoes often say unhelpful things. Anyone who has had a loved one go through the difficult decline of dementia knows that it is agonizing and we can often wish for an end to the suffering. Losing a parent is never easy, but watching this type of decline over years is unbelievably painful. I'm dealing with this with my mom. Please know you are not alone.

My sweet, caring friend, I can only say that I too cry every day for my mom, who is just like your dad. I cling to my memory of her when she truly was my mom. Now she is a lost little being who poops in her pull up, in her chair. I would not have imagined this would have ever happened to her. The only thing I can say is hold on to those memories of their life before this terrible brain damage seized their precious lives. And be there to catch them when they fall, as they did for us. It is a heartbreaking sacrifice but we must do it for them, as they did for us. It is true and unselfish love.

I understand Upstream's feelings all too well. I've watched my Mom die from Alzheimer's disease just to have my husband diagnosed a few months before my Mom's death. I'm sure people who havent been through this aren't in a position to really understand. To me it's like I've already lost my husband and it was the same with my Mom. I'm taking care of my husband at home and there is no end in sight after 4 years. Right now he can still basically take care of his own personal needs, although not very well. I try to live day to day and not worry about what the future holds. I just pray that something else will take him before the Alzheimers because I think that would be a blessing for both of us. You do feel guilty for having these feelings because you know the only thing that can save him from this prolonged disease is death. He is on every medicine available which is only prolonging the Alzheimer's and you have to wonder if taking all these things prolonging the agony is the right thing. But, it's what the doctors tell you to do and you just try to do what you can. It's hard seeing a once vital person who now looks normal but cannot really carry on a conversation with you or understand any simple thing you say. We've lived in the same place for 50 years and he doesnt know where the bedroom is among other things and he is always wanting to go home. How sad that he is home but in his mind he isn't.

He enjoys company but no one wants to visit. I guess It is because they dont know what to say or are afraid they will say the wrong thing as they often do. Others visit those who are sick with other illnesses but not this one, not even those you thought were friends for the most part. I hear comments like I dont know how you do it. There are days when I don't either and I do not know how much longer I can. I read recently that you must make the most of whatever life has for you and be happy in that circumstance. So, that's what I try to do and I pray a lot. Through Gods word he tells me not to worry about tomorrow so I pray he'll take care of that for me when tomorrow comes.

I, too, am an only child and my dad is suffering with Alzheimer's. Suffering is the correct word. Sometimes he knows me, sometimes he can't quite figure it out. He gets very confused if there is deviation in his route. He babbles with no coherent thoughts. He needs help dressing, showering, shaving. It is maddening to see his body outlive his brain. You are not alone in the very unglamorous journey.

I'm slowly losing my father to deminta as well and yes it's the hardest thing to witness. My father lives with me so I know the hurt it causes. Sending you my prayers and strength. Hon, try to stay strong

You are now grieving him which is why you are upset - when he actually passes away you may not grieve much because you are now 'pre-grieving' the loss of what made him really be him - when someone dies you miss their spirit not their body because it is what he said, his humour, his advice & his love not his blue eyes, grey hair & you are loosing so much of his spirit now - that's why we all love those occasional sparks of the 'old dad' that happen - just know you are not alone in feeling this way - if it gets you too much maybe go for a bit of grief councelling

Upstream - it really is a long and lonely road. And it is certainly unique for everyone. People try their hardest to say the right things with the best of intentions - your grace in those moments is key ;-). It certainly can't hurt to reach out in forums like this and other support groups for caregivers of those with Dementia or Alzheimer's. To be around people who are experiencing a little of what you are helps. Good that you're reaching out. Hang in there. Cherish the good days and remember that the bad days will pass.

Heart goes out to you. My wife and I have faced this situation with both sets of parents even though the path differed with each one. Hang in there. Finding humor in some of your loved ones day-to-day situation helps. Sometimes laughing at the situation keeps you from crying. Basically, you are dealing with death twice. Once of the mind and, later, the body.

MIL is only one still living. Her decline started about 6 years ago but has been more pronounced in past 18 months. While she lived with us for nearly 5 years, a year ago she reached the point of needing additional care. She is now in assisted living. We went through some of the stages of grieve before finally accepting that this is the reality we now face. This forum has been very helpful in understanding this disease and realizing that each person's path is different. It also helps to learn that our situation is not as extreme as what others face. While my earlier note mentioned that we faces this with each parent on both sides, there has been little overlap so we could deal with each one at that time. Some must learn to handle the pain of dimentia with multiple people at the same time. While MIL normally is in a fog, about three months ago we had one day where her mind was clear. Our only explanation was that this was a gift from God that we need to cherish. Best to you on this difficult journey.

Upstream - I totally understand how you are feeling. My dad, aso has dementia, has lived with us for a year now. When he moved in he was able to do almost everything he did before he was diagnosed. Every time he gets sick, his dementia progresses quickly. He also has sundowners disease so he is not getting enough sleep which makes the dementia seem so much worse. We have someone coming in 20 hours a week to help him with showers, shaving and exercise. He complains all the time that his caregiver is cheating us. Apparently that’s the paranoia part of the disease. He is not my dad anymore which breaks my heart. Reading all the comments really helps me not to feel so alone. Hugs!

I am also an only child who cares for a mom with dementia/alzheimer's at home. It is hard for friends to understand what you are going through. As you said once a parent dies you grieve and move forward. We are in a situation where we grieve every day for the person that is no longer there but you still have to care for them as if they were. Mom rarely talks but otherwise she is healthy. I take great joy in those days when I tell her good morning or good night and she actually says it back and/or laughs at me. Every once in a while I will say "I love you" and she will say "I love you too"...Doesn't happen often but when it does I relish in those moments. I do believe that although they can't express themselves, somewhere deep down they know you are there. I try to focus on the blessings that God has allowed me to be healthy enough to care for her and every morning when i have to get her up, cleaned and in her chair..I ask for God's to give me hand. I know it's not easy and on those days when you are sad, don't feel guilty about having a good cry or even wishing things were different? God understands we are human. Try to notice of little things like if he smiles at you or pats your hand. Try making him laugh by making faces. My mom will usually laugh or make them back and that is a nice moment.

I'm right there with you, grieving while alive....it IS so incredibly heartbreaking....
There are lots of folks here in that boat with us....I did it with my mom and now my dad....
The way I cope is to stay present as possible....in this moment....not allowing my mind to drift to the past or the future. And when we have good days, to be really-really grateful for those good days. And nurturing myself when we have bad days (he's oblivious)....allowing whatever emotions to come up and then to keep going.

The good thing out of all this, is that I have a greater appreciation for the little things........and I move slower. Moving around with greater sight. I have more compassion and patience for others. It really very quickly put things in perspective.....it's expanding my consciousness.

Keep coming back when it gets overwhelming....we are all here for each other.
Blessings to you, sista

Dear Upstream, when I say I feel your pain, I do. I'm also in your situation, except I'm my mother's caregiver. I too look for the end, mother has stage five and osteoporosis together which makes it another challenge. There is no " at least you still have them"comfort, because they're already gone, the person you knew and loved doesn't exist any longer. I wish I had the words to make you feel differently,but I don't. Just ask for patients and peace. We're all here for you

I have no advice for you except to keep reaching out to other's for support and to take care of yourself. This isn't easy. ((HUGS))

I am so very sorry about your Dad and what you're going through. Our precious Papa had dementia for 10 years then died of it at age 92. It truly is losing your loved one bit by bit. I just took what blessings I could from being with him and there for him. The miracle for us was that even at the end when he no longer knew who he was or anything else, he knew us and would say, "that's my girls." He was in a nursing home at the end and we'd go every day to spend time with him. His last day he was not conscious so we held his hands, reminisced to him, sang and hoped somehow he heard us. It is horrendous to watch a loved one to through this. We just had to take it a day at a time and love him. Prayers for you and your father. Hugs.

Upstream, Your post was helpful in that you are honest with your feelings. By reaching out you touched many...myself included. I just want to say that you are not alone. There are so very many caring people on this site. Every time I post they always have so many thoughtful comments and good advice
I miss my mom and she is still here with me. The dementia is taking a very intelligent woman away slowly. My prayer for you and many others is that we love and endure. Take care

I empathize with you. My mom languished for 14 years and my siblings live out of state. Perhaps it would help to look at things from another perspective. Enjoy every bit of your dad that is still available: sing to him; show him old pictures; play music from his generation; put soothing lotion on his hands; talk to him about anything; record his voice; bring him cake or ice cream or chocolate, whatever he enjoys; revel in his smile and laugh. Make as many positive memories for yourself now so you can hold those close to your heart in the future.

I can relate. My husband has ALS. diagnosed 2013 but started in 2011. He’s attitude is sad and mad. He’s changed so much and it’s such a slow process. And I’m his only caretaker. I was a CASA for four years and had to leave in 2013, a volunteer job that I loved, as he could no longer do things. So I have no life. He’s constantly delegating duties n getting rid of my things n his without asking. I’d say something but he has anger issues. ( he was an upper level director/manager for 23 yrs.) he now has no life. And I understand his pain. We have been married 28 yrs together for 31. ( I took care of my mom with Alzheimer’s, and that was hard but she died in 1.5 yrs. in 2007, also. I will pray for you. And cry for all of us that live this life. Take care my friend.

Do not feel guilty wishing it would end. My mother was at the beginning of her journey. I was in the processes of moving her in with me when she had a heart attack and died. Loosing her was bad, but it helped knowing she wouldn't have to face loosing her mind. She was already where she couldn't be on her own and I miss her. But what I miss is what she use to be. Not the shell that she was becoming. She had watched her mother go that rout and it was her worst fear she would end up like that. Instead God took her home so she can be with my brother and dad. So you have my permission to wish it was over. Use this place to vent. It's a good place to do that. Cyber hugs for you.

We are sure a lot of us in this boat, eh? Until your parent is in this stage of 'life' its hard to understand " I would rather she was gone". No one would choose to live in this situation. It's such a tough thing to have to let our parents live in facilities and be mostly taken care of by non family but there is really no option when you work and they need so much care - my dad is at home with mum in her moderate dementia and it is obviously very draining on him. She has completely lost knowing what the next step is - dressing, bathing, even sitting and chatting - you have to clue her on what to do next. Thank heaven she is content most of the time but dad has lost his partner and now at 89yo he is working full time again - taking care of her. Yes, I find myself hoping she will go in her sleep; it would be merciful, I don't feel bad at all feeling that way - as I know she would not have wanted to last so long this way.....

I'm so sorry Upstream. I know how hard it is. My dad had dementia before he passed and I honestly think I was a lucky one given all the things I've read on this site. I can totally related because I prayed that he wouldn't linger for years without being able to talk or recognize me. I was fortunate that he knew me up until his final 10 days and he had his eyes closed the entire time so I never saw the blank stare. I think it's just being honest that sometimes it is so hard to see them in a condition that takes just about everything from them. I can only say that there is a certain relief once they pass. You feel sad and miss them, but there is a kind of peace too. You keep hanging in there. There truly will be some hard, tearful days. You'll get through it, day by day.

Upstream, This is so hard. I am attending a six week course for caregivers. Most in the class are dealing with family or friends with various dementias.
In the first chapter of the book, and in the class session the speaker emphasized that this is a new relationship with your loved one. The person you knew is not the person you are dealing with now. Our loved ones now have brains that are dying. Our old relationships are now happy memories. Our new relationship is completely different. The idea that is a new relationship with a very different person helped me a lot with dealing with my Dad. There are limited conversations, he is delusional at times. He needs more human touch, like holding his hand, hugging him. Of course I did not hold his hand before this since I was a child.
He does not know he is declining, so the sadness is my thoughts and emotions, not his.
My siblings are just figuring this out-I worked with dementia patients for 30 years. They are finally realizing anything unresolved with him will never be resolved.
I hope this viewpoint helps, I do not want to add to anyone’s pain. It has helped me a lot.

Upstream: I'm asking our Heavenly Father to lift the despair that you are feeling. Go to the Lord in prayer and it will help you feel better.

My heart goes out to you. I wish there was something I could say or do to make it better for you. I know exactly what you are feeling because I just went thru it with both my parents. my dad and I are/were so close. the pain and hurt, the emptiness that you feel for your dad at times is just unbearable. like you I held it in but at times I lost it. my parents both declined anymore doctors, hospitals etc they both decided to let god take over at home. they wanted to die in peace at home. I moved in with them and each day I looked at them my heart broke alittle more. its hard when you are the only child to care for them. its hard when you have four sisters that didn't care enough to even call for years at all.
I understand everything you are saying and all I can say is each night before I went to sleep I didn't think of the negative things I focused on the happy times of the day. the talks we had. the laughs and stories we told each other. once the alztimers/dementia took over it was even harder. dad passed a short time ago and mom passed three weeks later. I am not going to lie its the hardest thing in life to deal with, holding your dying loved ones as they took their last breath. its been just a few months and the pain is as if I lived it yesterday.
my heart goes out to you.
my attitude has always been my parents brought me into this world, stood by me thru the good and bad times and now it was my turn to do the same for them. and I did... and as much as it hurt me I would do it all over again if I had too.
be strong, see him, love him as much as possible and treasure the time you have left with him.

I'm going through this same situation with my husband. Dementia takes your loved one away piece by piece, leaving you with only memories. It's a terrible disease, not only for the patient, but also the family. Everyone tells you hang in there, what other choice do we have.

I also pray for guidance and to have the best words to use, the best ideas to follow, and for strength. We are called upon to love one another and especially our parents. I need that mental and spiritual support for the inner strength to do this role well. Would the staff nurse have some ideas or even a chaplain who is used to end-of-life situations? For those of us who are doing this for the first time, this task can be full of emotional surprises or pitfalls. Someone who deals with this regularly may have some insights to share that would be helpful for us first-timers.

I feel the pain of watching your loved ones lose more and more of their skills each day and the guilt of hoping some other disease ends this journey soon. Yes, we lose our loved ones many times with this long drawn out disease that robs people of their very essence. Each stage of dementia they enter brings a new mourning period. Someone mentioned we all know our folks will die, but NOTHING prepares us for dealing with parents dying from dementia. I don’t even secretly hope my folks pass from something else anymore. I tell everyone that any quick disease or sudden heart attack would be a blessing and end a lot of suffering for all of us. If that sounds horrible, I’m sorry. Bless us all....

God Bless all. Hardest thing I’ve ever dealt with.

Upstream, its very normal to want a loved one's suffering to end. Whether cancer or dementia, when someone you love is in unending pain and you cannot help them, it is a special kind of hades. My father's vascular dementia has been advancing for over 20 years. The worst was when he went through a stage of great anxiety. Dad wouldn't take the anti-anxiety meds consistently and he would have awful panic attacks. He was so afraid, shaking, often crying and trying so hard to get a hold of himself. I would wrap my arms around him and rock him and tell him everything would be better soon and then get him singing hymns with me like we did when I was a child. When things settled and I could leave my parents' home, I would go home and cry buckets. Dad's existing in SNC now, taking all his medication on schedule and so angry with everyone about everything.

Guilt goes with care giving too. Four years ago, Mom called saying my Dad thought he was having a heart attack. When I got there a couple of minutes later from my house down the street, he was upset, breathing a little heavily but saying the chest pains had lessened. Dad had never had any heart problems before but his age, high blood pressure history and sedentary life made him high risk. On the advice of the dispatcher, I gave him several aspirin while we waited for EMTs, put his feet up and concentrated on getting him calmed down. When the EMTs got there, they found his vitals normal and didn't want to transport. I basically forced a transport by pointing out Dad's prior symptoms and risk factors and implying if they didn't transport and anything went wrong I would be coming after heads. Dad coded in the ambulance on the way to the hospital but was revived after being down for almost 3 minutes. I've wondered more than once if I'm responsible for Dad's current suffering. I was the advocate for his treatment during that heart attack. If I hadn't insisted he chew and swallow those aspirin, if I hadn't insisted they take him to the hospital, if I hadn't pushed for the stent, if I hadn't been so focused on saving his body... then he wouldn't be suffering in mental anguish today. And if he had died and I hadn't given my best effort for his treatment, then I would feel guilt about that too. There are no clear choices and no way to avoid the guilt. Dad didn't want a DNR; he always thought that way, long before the dementia.

The one thing I can tell you is that as more of your father's personality dies in dementia, as he becomes less the person you knew and the new dementia person emerges, coping will become easier. Someday the dementia behaviors won't hurt anymore. What hurts is when the "real" Dad makes a brief appearance - only long enough to underscore all that has been lost. I was online earlier tonight purchasing the big box of Godiva chocolates for Father's Day. No matter how angry Dad is that I wasn't there sooner, he always likes the sweets.

I'm not ashamed to say my father's physical death will be the end of great suffering - his, my mother's and even mine. I both fear and look forward to that day. Everyone who has walked this path with a loved one's destructive disease will understand; many without that experience never will.