How do you deal with your feelings of grief and loss as your parent changes?

This may not be an answer to the question but I find myself just wanting to write. My father passed away Jan 3. I cry and am so sad for the moments I will no longer have with him. Taking care of him was the hardest job I ever had. I have my sad moments for sure but what I didn't expect was to have this overwhelming feeling of love and gratitude. I feel so fortunate I was able to take care of him. I found myself loving him more than I ever have. It feels like such a gift.

seahag - my condolences about your father. My father passed years ago , and no life support too, which was a good thing for him. It was his time

My post is actually addressed to juddhabuddhaboo who is the person who originated this question.

I know these forums are confusing at times.

((((((hugs)))) to you

Thank all for caring, but Dad passed on 1/26/ 014, All I can say is make sure of your on your do not resituate orders. Every time you enter the hospital you need to present one.. You get this from your doctor and is a yellow shit to prevent you from being put on life support. The best thing for me was that my parents had a living will and painlessly I was able to remove him from life support..

judd - the only way I know to deal with grief and loss, and I have dealt with much of it, is to feel the pain, cry the tears, mourn the losses in any way you need to. If you don't feel the pain, anger etc. you don't move through the grieving, You are writing about it. That is good. It isn't easy when it come to a parent, but it is doable. Having the parent still alive but not what they were is a double edged sword. Keep writing, keep expressing your feelings in whatever ways work for you. Acceptance comes slowly for most, not all at once. ((((((hugs))))) to you and do something good for you today.

Thank you everyone for caring to write to support me. Never thought of myself as a good writer though. Thanks for the compliments.

juddabuddhaboo! Please write a book about the heartbreak of caregiving to elderly parents. I would buy it as you are an interesting and talented writer. I don't like who my mother has become anymore, at 101. They do change as the brain atrophies. It's a hard pill to swallow! Keep writing to ventilate!

I have always been amazed about the quality of questions and responses on this forum. I am ever glad I found it and this question has really resonated with me at this point in my caregiver journey. What a skillful writer you are and have captured so many of the feelings we go through when a loved one slips away. Thank you so much for sharing your experiences with your mother.

Beautifully written, and very profound.

Your writing is really good and it almost read as a poem.

I just have to say that when your parent becomes ill, especially with a disease like dementia or Alzheimer's you become the parent or caretaker and you have to grow up really fast and realize that all the niceties that may have filled your previous days or visits have changed. She isn't the same person she use to be, but it isn't her fault, she has a disease or illness just like cancer only this one has robbed her of her mental faculties.

My sister had 3 broken vertebrae that she had to undergo surgery on twice to have cement injected into them. We spent all day at Kaiser doing this on two occasions. When we got home Mom was a bit upset that we had been gone all day long and left her alone (she wasn't my daughter was here) but even though we tried to explain how serious and time consuming this entire procedure was, it meant nothing to her. There was no concern, no sympathy, no love. I felt horrible for my sister. I work my butt off in her house every single day as I am the unpaid 24/7 caregiver. By evening all I can do is waddle to the bed and fall asleep as my head hits the pillow. Mom however will go into a yelling tirade at times and scream at me that "I never do anything around here!" I am crushed as "I am the only person who lifts a finger in this house, inside and out!" What makes it worse is that I suffer with many medical problems myself including horrible arthritis and I am on disability, does she care? NO she doesn't care, she can't remember anything for more than 10-15 minutes, so she wakes up in a new world four times an hour!

You will have pangs of hurt and anguish over how your mother will change and become a different person but you have to accept her where she is because her actions will change as time goes on. Remember she is not doing this to purposely hurt you, it is her disease talking, but it doesn't mean it doesn't hurt.

It sounds like you both use to have a wonderful time together and I would still try to do that, but you MUST lower your expectations and just accept her for who she is each day you go see her.

If you have not already done so or your Mom, I would suggest you make sure that Mom has a trust set up and has you or another sibling as her DPOA for finances and healthcare. If you wait too long, your Mom can become too ill and the attorney cannot give DPOA to you, you will then have to seek guardianship which is costly and long and involved. You will need this as Mom becomes more ill and cannot make decisions for herself.

Your Mom may be a different person, but I am sure she still loves you and enjoys your time together! Enjoy her as much as possible now!

You know what, I read about your loss of an affectionate relationship with a smart and caring mother and while I sympathize with your sense of loss I envy you that you ever HAD such a thing. You had it and now mourn the loss, while I don't have to mourn any such loss but suffer from the reality that I never had it in the first place. I guess there's no free lunch, we suffer the lack early or late.

I've shared your same emotions and walked/walking in your shoes. How do I cope? I participate in this blog, read others posts, learn so much here --mostly that I'm not alone, my moms behavior is the norm, there are others better or worse than me. I've read many books, watched the Youtubes recommended, watched PBS on ALZ and aging and visited AL and memory care. I feel soooo much more prepared and connected than I did just a year ago.

I connect and share with my friends who are journeying with me or have gone before me. We are hope and strength for each other. I talk, I have learned to be honest with my feelings and not ashamed on how I feel about my mom, her life, my needs. It is freeing.

I've cried, still do sometimes when I leave mom or hang up the phone. I allow myself the luxury to cry, scream, grieve -- because it is a grieving process...but I can tell you, it gets better, the tears are less, the understanding greater, the acceptance growing. I have to help mom and myself journey through this new and final chapter. I don't know how it will end but I will be at peace and pray that for her too.

I could visualize every movement. I have been there. it was me in the car, not with my mom but my dad. Finally, after years and after seeing and hearing things that just didn't add up, I gave up on any idea of acceptance....of me or of any goodness on this earth in his mind. He was never very kind; now he seems even evil sometimes. He is my father; I will always love him and care for him. But I don't like him much anymore.

Whether during my mom's last year of life or my 89 year old dad's current fight to live without her, the biggest lesson I've learned is to stay in the present, in the now. My books often became my best friends - Power of Now, The Four Agreements, and Michael Newton's books on soul transition and journey. The only thing I could and can do is to do my best. I got help for my dad and I'm making sure that I have some piece of time to make art, workout or meditate. My dad can be a bit testy, but my auntie, my boyfriend and I keep focusing on all of his good qualities and in some divine manner, our collective focus helps him keep those good qualities alive and well as well as remind us that he wasn't always this way.

My father went into the hospital a week ago. The hospital has admitted fault with the doctors care. He went in for a breathing problem and is now again in kidney failure, heart failure and is totally dehydrated. All of which he was not at the time of admittance. My problem is my sister. She does want to help, but she only comes once a year if there is a chance that my 90 year old father will not make it. My mother for some reason really acts out on her for sympathy when she is here and acts like I don't do enough. I moved into the Seniors park, where my parents live, 9 months ago with my husband to be around the corner from my parents. I am here for them 24/7. Since I moved to be with them, my husband suffered a severe unexpected stroke to his right side. By some special clot busting medicine and his unbelievable good health, within 4 months he went from not being able to use his entire right side to being able to return to work. He is in my eyes 80% better, He stills needs some help from me in dressing, but once up, he is able to go back to work selling cars. He still has his bad days. He now needs to take his days off from work, which he rarely did before. Back to my father, sister and mother. My sister has been back 1 day since flying here from NJ. I have been going to the hospital for a week prior to her arrival. Today with her arrival I saw the chance to be to take care of my home and husband and explained it to he3r. Now it seems she feels that I am not allowed this day to tend to my needs. She has everything taken care of and able to take care of my Mom who she is staying with. Why is it when she arrives she makes everything so hard on all. Like today she is bringing my Mom home to cook for dad and than bring it back to the hospital. The hospital is 40 minutes away. Why can't she just stop somewhere and get him a good cup of soup that he will or maybe not eat at all. He loves soup. She has to be moving and making a big deal out of everything that needs to be done. In my eyes making it harder. When she comes her sole purpose is to take care of Mom. She doesn't have a home huband or anything else here to do. My Mom had a rough night with Dad when the hospital released him too soon and he was up through the night with diarrhea. When my sister flew in yesterday Mom had me wheel her in the wheelchair to go get her at the airport and is now using a cane to walk. The day before, after her bad night with dad, she was able to walk fine with me to go and see him. I think she just loves the attention my sister will be giving her while she is staying with her. The most my sister will be here is a week, as she works. Than again it is all on me. I explained to my sister why I was staying home today, but I can only imagine what she is saying about this to my Mom. Today my sister called me and told me Dad cannot come home. I assumed she was referring to a nursing home4l My Mothers wishes have always been no nursing home. I told my sister that if I had to I would put my Dads medical bed in my living room, I would do so before I would allow him to go to a nursing home. After that she changed in mid stream and said she was talking about rehab and had to end the call for some reason. My father knows what is going on about him and I know his wishes of not going to a nursing home. I told my sister that in 2 days when the hospital wants to release him that we can make our decisions on what to do than. On every occasion my Dad makes some unbelievable recovery and comes home. I don't mind talking about options, but she wants to make plans. I don't know how to handle Mommy's Baby, my sister, so that I don't get into a fight over this. I am the oldest and for 358 days a year I have discussed this with my Mom, when my sister is not here, of her wishes not to be in a nursing home. How do I handle my baby sister? How do I get her to respect my parents wishes. Mom will do as her baby girl (my sister) says to do. I have a real problem with nursing homes because of all the bad press on them. My sister works for a nursing home and knows she doesn't want to end up in one. How do I reach her with her suddenly bad decisions. I believe she is in favor of this because it is the EASY WAY OUT. I am very upset and I hope this story makes some sense. If anything thanks all for listening. It feels great to get it out.

I've been grieving I've realized for years over my parents health and loss of my childhood. My father needed my mothers attention as much as I did growing up due my father coming from such horrible dysfunction. I have no answers to this nor any words of wisdom. I'm grief stricken today, as my parents received a visit from the courts because they have to be made aware the attorney is filing for guardianship in my name. Holy hell broke loss, on of my fathers sisters called wanted me to explain, wanted me to call my folks as if I've done nothing to help. I thought the other sisters they all had the same information, but no they hadn't . I had a long talk with one of dads sisters not sure how she turned out nicer than the rest, yet I still don't trust her either I can't. As the other of my dads sisters tried to have me disinherited. I called to try and still things down with my folks, I called the nursing home my dads enraged and getting another attorney he said they don't want to speak with me. My mother said she can handle their finances, it was just months ago I stopped a lien from being placed on the house because she forgot how to write checks. She was so delusional the other night when I spoke to her she told me they were being abducted my the nurses and put in her basement and when she told the nurses off they sent in the Catholics who showed her a movie that made Jesus look like a pervert. Yep their fine, geezzz, did my mention my dad totaled his truck and was found in the woods crying for help by two loving and kind women I'd still like to find them and thank them. Yeah their good to go, I'm so heart broken right now I can't stop crying. I wish I had some answers but I'm so lost right now......

Sorry for what you are going through, with your Mother.

Life and the aging process, makes people different and it does affect, the loved ones. Try to remember, this is your Mom and the changes, which are heartbreaking, are beyond her control, so do try and be patient.

I once asked my Mom, when she was "acting up", are you my Mother, which she repied, " you should have appreciated me, when I was nice." She made me smile, for I loved my Mother with all my heart.
I learned to cope with some of her changes, by thinking: I would rather deal with some hurt, than have her die, and lose her completely. Believe me....thinking that thought, REALLY helped me
.
Now that my dearest Mother is gone, I have no regrets, and I miss her terribly.
I would put up with all her quirks and all her issues, just to have her back again.

If you think you will ever get her approval, since I suspect she was like my mother, never complimenting me but telling everyone else how proud she was, you are mistaken. At 92 yrs. even with dementia, her personality was formed, and she never got to be in the "nice" stage or not talking stage (if she gets there). However, you are perfect just like you are, you don't need anyone's approval rating and it is time for you to accept her disapprovals. Give her our best wishes and give her a valentine from us. You create your own happiness!

I am so sorry for your pain and grief. It is never easy to see someone you love deteriorate. I'm not a psychologist, but here's what I try to remember: First of all, she did not deliberately choose to be this way. It's a chronic, incurable disease that she cannot control. Each day brings new challenges for her and her caregiver. Secondly, try to replace your anger and stress with compassion. If she raised you in a loving way, return the favor. It's the least any of us can do for our parents. Third, accept the reality. It is what it is, now what can we do with "what is?" Alter your thinking to make each experience with her one that is positive and memorable (I know, easier said than done). Finally, if you haven't already read "Still Alice," please do so. Although you refer to each of you being shells of your former selves, remember that there is still a living soul inside the body that is of tremendous value. Give the gift of utmost love and honor that part of her and yourself. Life is a journey along a road with lots of twists and turns but we breathe and we are a part of it, so no matter what, it's worthwhile.

It doesn't even have to be dementia for a mother/father to treat you this way... I've been dealing with this all my life, while trying to take care of my parent in the end stages of her life (with no family support... like an only child). My heart and gut is wrenched in a stagnant mode. I truly understand the feelings of wishing a daughter could hear the 'nice, meaningful' words from a parents mouth (heart)... I don't know why being 'nice' (especially to your child) should be so difficult a thing to do, especially when they have given so much to care for them... Don't know... getting tired of trying to figure it out... but, those of you on this site, have helped me keep my sanity... thank you...

*Juddabuddhaboo* you wrote a good, thought-provoking letter. I hope that it helps a lot of caregivers. Those of you who have written your own follow-on letters have given good inputs as well. This is a valuable discussion.

Bless your heart! I have been thinking about joining this site for a couple of years now, and when I read your question, I became teary and joined this site. I know EXACTLY what you mean. I talk too loud or too low; it's either too hot in the car or too cold. I have finally realized this is just the way it is & I mentally prepare myself to the fact that during our 10 mile drive, I will be turning the heat off and on, lowering my voice (then she can't hear me) and trying to temper my driving (which she hates.) While my 91 year old mother professes her love and tells me I'm beautiful - she cancels it all with that magic word "BUT". Alas, the way I get through this is just to accept that things are different now. Daddy died about 7 years ago and I am the only child (her seven siblings have long since died which is funny cause she had all ailments and infirmaties.) Sometime I look at the sky and ask why he left me with all this. (Now, I'm getting into one of my other issues - sorry, I digress.) I moved her to a very nice independent senior living home a couple of blocks down the street from me (because if she goes to a NH, she will die, I know this because since I was about 10 years old, she has made me promise never to send her to one), but even though I bring groceries, medicine and anything she really requests, as well as hang out with her and encourage her to talk about the good, interesting things that happened way back when - I don't love her anymore or I'm cruel because I tell her the way it is. What I try to do is look at my mother now and try to remind myself that she's in there somewhere. I haven't worked an actual job in 2 years so that I can take care of her, I too am a shell of myself. I think alot of her behavior stems from fear, and if I can find time to think rationally, I realize I'd be scared too. Hang in there and I'll put positive thoughts into the universe for you. Thank you for inspiring me to join this site. xx oo

You have a poetic soul. I believe that the capacity to express yourself with words will help you cope with the pain of watching your parent decline. I have had people compare the experience of caregiving to taking care of a baby or small child. I strongly disagree. When you are caring for a child, the process is usually one of hope, growth and progress. Caregiving of an elderly parent tends to be the opposite of that. It is not a progressive experience of growth. It is a slowing down, a dwindling of strength. It is agonizing to watch it. I do, however, believe that hope can still be a part of the experience, even when caregiving for an elderly parent. There is the jope that this day, this moment can be a positive one. There is the hope that you can handle this obstacle with grace. You seem to have a very well-rounded perspective of what is going on with your mother. You obviously strive to have a balanced viewpoint of things. This can only benefit you in the long run. Know that you are not alone in your experience. Know that you are doing good for someone who once did good for you.

Keep on writing/journaling juddabuddhaboo. It seems to be your path for coping and grieving and you take us along when you share it, helping us recognize our own unrealized sadness and grief.

The painful experience you describe sounds familiar. It's like somebody died, only worse. When people die, others join us in a process to put them to rest, physically and mentally. But with dementia, the person you knew is gone and yet their body remains. This is very confusing to the emotions.

For help, I would say to explore the same resources you would use in the case of an actual death. It's a matter of allowing yourself to go through the stages of grief. Then at some point we have to let go of any expectations of getting something from the dementia patient. Our loved one is gone and we are left to provide compassionate care for a needy stranger. God bless.

I would say acceptance comes, eventually, but certainly not before that painful period that strikes many of us. Watching a beloved parent dwindle is painful and that incredible emotional pain will slowly leave. Understanding that you do feel, that you do express, that you do cry makes you a real human being and a loving child. Be proud of that and take care of her as best you can and you'll have zero regrets in the future.

Sounds like you are coming to terms with your mom's aging and all that brings with it. It is a tough time and really does put us through some serious changes. I find tinybuddah.com to be one of many spots to gain inspiration and perspective. I would say everyone on this site understands the pain and loss of caring for our loved ones, great place to gain perspective and support. Hang in there.

judda, i am not sure what the wheatbelly diet is... but i did go gluten free to see if it would help with my arthritis. and it did.

my mother was so abusive when her health was better. she never missed a chance to degrade me for marrying my husband (he is overweight) and she insulted him every time she saw him.
my husband is a wonderful gentle person, and as fate would have it, often finds himself picking her up off the floor. his voice is soft and sweet, even for three a.m. potty calls.
now my mother says, "i don't know what i would do without you" to him.
are these changes sad? that she has gone from the matriarch, trying to run the entire family, to a woman who can't get herself out of the bed? yes, it is sad. but perhaps in the end good for her soul.

Thank you everyone for your love and support. I am glad that by writing down my inner most feelings that this may do something for all of you. And I love the exchange here. Patariamc, Thank you for the shell advice: I couldn't understand why wearing my "shell" doesn't feel so nice to me. It's not that I am mean or anything: it is just that I don't have that kind of relationship with anyone else in the world (well maybe sometimes with the members of this family). I see the reason why though: it is not my usual happy go lucky, fun, enthusiastic, and humorous self. As soon as I see my mother, I brace for the unexpected hurtful things she will do, and fear that I won't know what to do. If she is in a decent mood, I don't give her much love because as soon as I do she becomes like a spoiled child or pulls me into her vortex. I don't enjoy her energy anymore.
Praying for them helps me. Praying for the SIL, the elder parent. Praying that my own attitude will evolve to whatever it is that my soul knows it should be, and knowing that God has no rush. Time is an illusion, actually.
To answer a question: I don't have much going on in my life but I am a videographer and I love that work so much, that is my joy.
It's snowing heavily here and it is a day I can be alone and do what I wish at my desk: work or make muffins.

Say, anyone try the Wheat Belly diet out there?

Yes, you are a very talented and expressive writer! Thank you for putting into words the experience that many of us know too well.

Sadly, progressing dementia of any form seems to bring ever more narcissism and hostility in some cases (I choose to believe it is due to my mother's fear from sometimes being able to recognize her declining level of memory and control and not just the continuation of old, longstanding behaviors); it's plus side is she is gradually forgetting about things that used to be 'battlegrounds' for us: e.g., her foolish handling of finances and property, untruths she shared with others about me and my brother and my kids… However you think of your mother (i.e., a shell), odds are she is no longer nor will ever be again the mother you knew and loved. Continuing to care for her may require some mental, emotional and perhaps physical gymnastics on your part. Keep in mind you are the one learning from the "lessons" each encounter, not her.

The shell you have created for yourself is a GOOD thing as a protective, coping mechanism. That doesn't mean it always feels good or keeps the guilt or grief at bay. Those things don't die willingly; they have to be starved to death by feeding them ever less. Having (arrogantly) said that, my own tears and caregiver/daughter angst come less often now but I am not yet able to anticipate they will ever totally disappear. Perhaps it is better said that those emotions will never die but will eventually be stripped of their power to control us/our actions. Your post tells of your advanced wisdom in that already. Talks in the mirror are a tool I also use. Please avail yourself of all possible resources on this potentially long and often difficult journey.

Everyone on this blog sends you their hugs, prayers and/or best wishes and many great suggestions can be found here. Most would agree when I say, "Use it and us!"