Follow
Share

Having spent a lot of time reflecting on Mom's situation and not having anyone, until now, to talk to asbout it I have come to realize that caring for someone with dementia is grieving for them in chunks.
The first time I had to go to the drugstore to buy adult diapers, I stood in line to pay for them and felt the tears well up. Luckily I held it together til I got in the car.Since then it has been little things, that make me grieve. Is this life or some higher power making the end easier to accept?

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing

27 Comments

Newest
First Oldest
First
A RN friend of mine just moved away. We keep in contact through the internet and I also post updates about my Dad daily concerning his condition, etc. (For those who don't already know, he has Advanced Stage Alzheimers.) She posted a message there that comforted me so much, I just wanted to share it with you. She wrote:

"I know this is a terribly difficult time for you...In your heart of hearts you know that he loves you and that he is still the man he always was and will always be. That is the person who you continue to talk to and share your life with even when he is unable to respond. He knows you in spirit and that will carry you until he is healed [in heaven] and can again bridge the valley that he walks through now. I will continue to keep you in my prayers. Much Love..."

Focus on the good memories, the love. The rest will pass.
(0)
Report
If he could have it his way, I would be taking care of him 24/7. I physically and mentally can not do that. He is mentally draining me, esp with his cruel comments. He's being cruel to everyone he encounters. So my mind can't really take too much more. I think I am going to wait til the dr have the hospice appt made and then I will meet them out there. I also feel like I should be at work.(feeling guilty) But I know I would not be productive. I will keep continuing to pray for strength and guidance.
(0)
Report
How is your relationship with your Dad? Does he want you with him? Does it comfort him? If you didn't sit with him, and he did die, would you have regrets for not being there?

A friend sent me an email yesterday, after reading about my Dad refusing food and medications, etc. I quote:


I know this is a terribly difficult time for you...In your heart of hearts you know that he loves you and that he is still the man he always was and will always be. That is the person who you continue to talk to and share your life with even when he is unable to respond. He knows you in spirit and that will carry you until he is healed [in heaven] and can again bridge the valley that he walks through now."

It will help to pick up a Bible. I suggest you read Psalms 23, I Corinthians 15:3 and II Peter 3:9, Acts 3:19 and Romans 10:13. That will help both of you when you read it out loud to him. The living Word of God comforts like no human can.
(0)
Report
As of yesterday, my Dad is now ready to die. He is refusing some of his medications and he is not going to dialysis any longer. We had a priest come to visit with him last night, but he's done fighting. He can't keep anything down any more, running a low grade temp, and his pulse is high. Amazingly, his blood pressure is good. I'm going to have Hospice come out to meet with him today. But he is refusing any kind of help. It's so hard to watch him suffer and he knows it's not going to be an easy death. I don't know whether I should sit with him or not. I can't work. Any suggestions?
(0)
Report
i'm speaking about the responsablty of my wife
(0)
Report
mitzipinki and all thank you all for givinging any help its not an easy roe to hoe but but i would never disrespect her and try to just stay out of the way i'm only 5ft away the problems start with my where my responablety starts and hers starts-remember i'm disalbeled witch is neither here or there I get the feeling my status in the house depends on my amount of asking her to help more with her mom there are 2 other sister's 1 stops by for money the other hides living 5 blocks away God folks i'm sorry for the babbling. Monty
(0)
Report
I don't know whether Aricept or Namenda helped my Dad. I think it's just his Alzheimer's and dementia. I saw and see no improvement, but only rapid decline daily. He's been weened off most of those meds now. Psychology never helped me or Dad. Prayer does. I'm comforted by it, and by the compassion and support of loving friends and family. Does any of that help Dad? Dad has done nothing but decline since the beginning of his disease. First memory problems, denial, and withdrawal. Then confusion, anger, aggression, delusions, and hallucinations. Then physical decline and loss of appetite. There are many other symptoms as well. I don't believe there's a drug in the world that can help
(0)
Report
peitz that's a good question. If you find another medication that helps that I would sure like to know. My father is also 74, with vascular dimentia. I think they are lonely and spend time making phone calls so they don't feel as lonely. They like the attention, just like children. My Dad is also on Aricept, makes him tired alot. He seems to not have as many outbursts, like he used to. He would also hang up on me. He blames me for everything bad that has happened to him. You might as well roll with it, after awhile you kinda get used to the verbal abuse. Just tell him that you are not going to let him upset you, in a calm happy voice over and over. That worked for my Dad the other day. Reverse psychology. Good Luck!
(0)
Report
Peitz, my mother was glued to her phone. She had her own, at the nursing home, so she could call her friends. But she would call me over and over and forget she called and call again.

I learned to answer the first time and find out what was going on. Maybe answer the next, then let that sesson go to voicemail. I'd start answering again later in the day.

I'd often call the nursing home, after a call, to make sure nothing was wrong. I went every day, anyway, but a lot can happen in an hour. But don't be held hostage by the phone and don't let guilt eat you up. Take care of yourself and keep coming back to let us know how you are doing.
Carol
(0)
Report
My first post. My Dad is 74 diabetic, hypertention and chronic kidney disease patient who takes dialysis 3 times a week. Over the past couple months, he has lost all of his short term memory and has become VERY irritable. We tried to start him on Aricept because he was diagnosed with vascular dementia, but he could not tolerate the medicine. He calls me over and over again until I pick up the phone. He is in a nursing home facility, but has a phone(which is like his blanket). He calls everytime I'm not there to help with "his crisis" and makes me feel horrible and guilty. I have tried to ignore his comments and told him not to talk to me that way, then he hangs up, but then about a half an hour later, he will call and not stop. Does anyone have any experience with this behavior? What are your suggestions? Is there any kind of medication that can calm them??
(0)
Report
Louiebug (I hate when I forget to login)... okay try #2

Louiebug, I noticed that you are a man caring for you mother-in-law while you struggle as well. I guess that we forget the men in the equation of caretaking, and for your wife, I can relate to how difficult hearing the same thing over and over can be (my dad goes about 30 seconds before he repeats).

Please keep in touch on these boards. I guess the stigma of caretaking always seems to be on the woman but a man also has a large burden as well.

Thank you for letting us know.
(0)
Report
Thank you ladies. Your words of compassion and encouragement bless and comfort. Bless you.
(0)
Report
It makes me want to cry. Alzheimer's always wins, and I HATE ALZHEIMER'S! But we can treasure those good moments however few we have left with them.
(0)
Report
(((((Anne))))) What a great way to honor him. I hope you had a good day with him.
(0)
Report
Watching Dad slowly fade away is painful. I guess it hurts because his confusion makes me feel empathy for him, but unable to imagine what it must be like from his perspective. Listening to his tangled sentences reminds me of the mental torment I feel at times when I'm under a lot of pressure to make decisions and it's accompanying feelings of stress.

He's eating very little and getting thinner. He says, "That's not good," "I don't like it," and similar expressions and protests about food, showering, ADLs. It's so sad. I don't exactly want the old Dad back, but a new improved one. Wishful thinking. I'm treasuring the good moments, but they are becoming fewer. I dread future decline, and participating in it. I'm learning to relax, and not try to force food into him anymore. Why fight Alzheimer's? It's winning.

I told him today, "Thank you for being my first Valentine." He doesn't remember, but I do. Think I'll go cry some more now.
(0)
Report
I think we grieve the small things whether we are aware of it or not, so we may as well make it a process. It is devastating to watch the deline of someone you love, and the grief is there. Recognizing it actually helps. You know you are grieving each loss as it comes, and so the death isn't so overwhelming.

Carol
(0)
Report
Good afternoon all. I read these notes and wish I could bring my wonderful Dad and Mom back! Mom passed from fast pneumonia due to slow parkinson's 10 years ago, and Dad passed a year ago after sudden congestive heart failure. I kept my Dad at home, but Mom had so much trouble with trying to stand up and not having balance, that I had to let her stay in the nursing home I worked in. Just try to remember the good times, and know that you are doing your best, and doing the right thing keeping them home if you are able. They put up with us during our "terrible twos" and all the teenage things we did!
(0)
Report
My first post. Responding to question of whether grieving over the little things makes the end easier. For me, yes, it will. I can't speak for anyone but myself, but the first time I bought adult diapers and bed pads, I sat down on the floor of the store and bawled silently for about five minutes. Two people stopped, patted me on the shoulder, told me it wouldn't get better, but I could adjust, and went on their way. I've toughened up a lot since then. Dad's 88 with Parkinson's, Mother is 81 with heart disease. Dad's dementia is worsening and I miss him. He's not "Dad" any more and it's OK now when he doesn't know who I am. I know who he is and that's enough. Detachment, as I learned to practice it in AA, is a wonderful thing.
(0)
Report
as this is the first time to be on this site and to read all the folks that take care of their mom's and dad's mine mom at 63 heart dad 82 both quick, now my wife's mom broke her hip at 82 I am a disabled truck driver and a lot of the care of my mother in law fall's on me, she lost all her independence all at once can't drive had to move in with us (we kept house for 1 yr) we wanted her to get better and back back on her own on some level but that was not to be. She has 3 daughter's my wife the oldest is having a hard time with her mom repeating herself all the time,I tell just answer the or what ever not get upset but i forget this is Her Mom, it's very hard to keep a happy medium anyway Thank's for inlighting news ME
(0)
Report
Joalhenry, your story is all too common. The "well" spouse covers for the one getting dementia. Then, the well spouse dies and the family realizes what has been going on.

I write about the grief of watching the decline - of having to do things for your parents that you know they would find demeaning, if they could comprehend. For many of us, it's worse than grieving their physical death, as we are watching a slow, agonizing death of the mind and spirit. Blessings to you. Please keep reading so you know you aren't alone.
Carol
(0)
Report
I have an older sister and 2 older brothers. But, I was the one who made the doctors appointment that diagnosed my mother with alzheimers. Our adventure started with my dad's death in 2002. My dad never let on how bad my mom was. We always questioned why he was so irritable all the time. After he died, I knew. We started with having to take my mom's car away. Her independence, that was really hard. Then it went to giving her meds and fixing meals. Cleaning her house and doing laundry. Yes, and cutting up food. Realizing she couldn't read. My mom tried to cover, but it's kind of noticable when she's reading a book up-side-down and telling you how good the book she is reading is. LOL -- Anyway, then we moved in. Giving her, her first shower was the hardest, then wiping her bottom if she couldn't do it (something she didn't say with words but with smell if you know what I mean). Then depends. Through each step there has been tears and frustration. Then, a couple of weeks ago my mother contacted a virus. One day she was fine, the next refusing to eat, drink, could not even keep her eyes open. When I took her to the doctor, we were both affraid that my mother was shutting down. That this was it. I was driving my mother home to wait for the test results from the hospital and was crying. Crying for my dad, whom I miss terribly. Many times I have thought it would be easier if my mom just died then to have to endure this horrible disease. Here we were and this could have been the end. I wasn't sure what to feel. One part of me felt relief . . . if this is it then at least we did our best. Another part thought, I'm not sure I'm ready to let go. In the end I prayed God's Will be done. My mother recovered. I hope when she goes it will be in her home of 42 years. Surrounded by all her things and us. But until then, we'll just take one day at a time at a time.
(0)
Report
I wish I had siblings, but I am it. Unfortunately all throughout life I have taken the brunt. I am also adopted, and was adopted 2-3 months after my mom lost a baby at full term due to doctor negligence. That being a whole book in itself, I digress.

I'm just to a point I won't take it period. I just walk away from her now when she's in a mood. It is just so weird that even with all the hurt, dysfunction, etc... she's still mom in the end.

Well for mom she has begged me and tried every trick in the book to get me to quit my job and care for her, which meant watching her sleep and being her doormat, THEN possibly taking care of dad. You can't sew seed on cement and expect a garden. It was cold growing up and she's lucky and blessed that I even took on the role of power of attorney. Sadly there are things I'm ashamed to think of why took that on, but again I digress.

She's got the best of everything and she still tries acting pathetic and incoherent trying to make me feel guilty. All I tell her when she starts is, "I think I've proven I won't quit my life to accommodate you, so knock it off."

Grieving, I lost a lot including a mom (in a manner of speaking). A split second can change lives, and watching them both struggle when there is no need to and watching Dad decline with the Alzheimer's is enough to make me sit down and cry forever. Thank God I get major headaches from it, so I refuse to cry for any length of time.

Thanks again for making people aware this is grieving the loss of not only dementia, but so much else depending on the relationship.
(0)
Report
Mitzpinki, I started caring for Mom with a lot of the feelings that you have expressed here. My mom is friendly helpful and just a basically nice person, with everyone but her family. With her children and me especially, she expects perfection. Being only human we let her down. I am her only daughter and the one who through the years has been the brunt of most of her anger. It caused a lot of problems when I was growing up and I acted out a lot. The irony is that I am here 24 7 taking care of her. In the countless hours that I have spent with Mom, at her worst and best she has given me a wonderfu
(0)
Report
I appreciate this. When I went into my counselor's office on one of my many visits these days... I talked a lot about 4 years ago... I couldn't since since then, I've had to handle since then, etc.... and he looked at me, and he asked me if that was a big event in your life wasn't it? It got me thinking how much I lost from that time.

It was a sudden stroke due to emergency brain surgery. I was up 20-24 hrs a day (haven't slept since), I've been non-stop caring in some form, dealing with finances, obtaining power of attorney, dealing with too many unknowns I can't even think of.

I think of what I've never be able to be growing up due to mom's perfecting lifestyle. I think of how I'm just now starting to discover what I like/dislike and I have to battle this all on top. I am resentful of how my life and time is being stolen from me, and it is grief, anger, tears, and then learning forgiveness while still trying to get through a marriage that is healing and all that goes into that relationship.

Grief... one small word that takes a lifetime to cope with.
(0)
Report
What I've always called "early grief," (different from anticipatory grief of knowing someone will die), is truly one of the loneliest things I've endured. When my dad was put into instant dementia by surgery gone wrong, we were all in a state of shock. Eventually, I realized that horrible grief was eating our whole family, including my children. We had to bear with that for ten years, before he was released from the trap of his damaged body and we felt his spirit soar. It was sad to lose him, on one hand, but so freeing on the other.

The other dementias my elders suffered were the slow loss, as Anne talks about, knowing that the people who were there for us can no longer be. We must be the ones to step up to the plate. It's hard being "the grown up." It's awful watching the decline.

Hang in folks. You are such a great help to one another. Communicating with those who know is the only way to break the isolation and loneliness.

Carol
(0)
Report
Grief is such a powerful emotion, and personal experience. All our past comes before us, and all our hopes and dreams dissolve. The painful reality that Mom will never meet our needs in quite the same way, and that we have try to meet hers, often without acknowledgment or gratitude, it ours to bear alone. Dealing with our own sadness over the many losses is hard enough, but we also get to help shoulder their grief and disappointment, as well. It's a tough, and often very lonely place to be. Just know there are lots of other lonely people out there, suffering with somewhat similar situations, and that it is transitional and temporary. Even when it feels lonely, you are not truly alone. People care, and God is always ready to meet you there, as you cry out to Him.
(0)
Report
Groundhog, i cant say anything about higher power or divine intervention, stuff like that, but i know what you mean. my mom has been in diapers for a while now, but its the little things that she just cant do anymore. the day after christmas she and i went out to dinner and i had to cut her meat for her. it took me a few, but when it hit me what i had to do for her, i had to go outside and cry a little. my brother brought me some money the other night and i cried again.
ive learned to appreciate the new her though. it took me a bit, but shes not the same mother that raised me. ive grieved for that mother and have been trying to enjoy the mom i have now. ive been trying to not get so upset with her attitudes, but cheered her on in all the small pleasures she gets now. hopefully, when the time comes, i can feel blessed that she is finally at peace. for i know that right now, she is hating herself for what she has become and what i have to do to help her. she wants to be that fun loving spirited person again, but cant when she lives in such a clouded world of confusion.
(0)
Report
This discussion has been closed for comment. Start a New Discussion.

Recent Questions


Popular Questions


Related Questions

Start a Discussion
Subscribe to
Our Newsletter