Why do I find it so heartbreaking to watch my parents decline?

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Why do I find it so heartbreaking to watch my parents decline?

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Both have dementia. Dad (89) has Vascular Dementia and Mum (86) has Alzheimer’s. They have been going downhill for quite a few years now. On the days I visit them in the NH, I sometimes find it hard to get out of bed. I feel like my life has been on hold for years. I am 64 now and just want to live a little before it’s too late. However, I feel guilty for even thinking these thoughts.

Alzheimer's & Dementia Grief Parents

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As another poster often says, “You can only feel guilty if you've done something wrong.” Have you? Did you ever neglect or abuse your parents? Steal their money or anything else? If not, you have no reason to feel guilty. Were you their caregiver and that’s why your life was on hold? And now you feel guilty because they’re in a facility? No reason there to feel guilty. Possible solution: visit less. If they both have dementia, chances are they don’t know you’ve been there anyway. Keep visits short. You don’t need to be there for hours and hours. That’s depressing. When you’re not there, do what you want, even if it’s playing video games on your iPad. You take care of you!

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I can feel a sense of guilt for not being content enough with the relationship as is because although I do what I can need wise I don't feel we have the relationship that in a more perfect situation it could be, never can be because of who we each are and wonder if I have passed that on to another generation.

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Build a life for yourself. Don't make them the whole focus of your existence. Their decline will hurt anyway. That is to be expected, but you need other things to think about. There is nothing wrong with wanting an interesting life. But no one can arrange that for you but you. Have you thought about therapy to work through these feelings?

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It's terribly hard to watch our folks decline, let's face it. What you need is a vacation! Why not plan one for yourself and get away from the whole scene for a while? My husband & I travel at least once a year for 2 weeks and it makes a big difference. I don't think you should feel guilty about wanting to live a little before it's too late.........so make it happen!!

Best of luck to you.

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Every person who walks this earth will one day die. That is THE big common denominator.

And it's nobody's fault. It is what it is. It's life. In order to have life, we also have to have death.

Would you really want your parents to live forever? They sound unhappy now--I think wishing more life on them is actually cruel, at some point.

Every single time I see my mother all she can talk about is how she could kill herself in a week if she just stopped taking all her pills. This is sheer manipulation on her part and I DO NOT play along.

I have NOTHING to feel guilty for. Neither do you. Why would you? Feel guilty at the natural passage of time and life?

If it's guilt over past, unresolved behaviors, then remedy those, as best you can and accept the reality.

I feel for my DH who (15 years after his dad died) still says "Y'know, if dad hadn't had that darn pneumonia, he'd still be here" . Said by a man who was not on the best terms with his father.

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That was nicely worded. I get the sense there is despair watching the decline and possibly the same imagining the same vision just continuing day after day without an end in site. Of course we know there will be one but worry the shape we will be in and sometimes wondering if we can make it to that point.

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Both my parents also have dementia and are now in memory care... I have been the lone family. member looking after them for about 7 years now.. and I am also wondering how much longer this will go on.. how long will the decline last?

I am also wanting to rebuild some kind of life for myself as I lost so many relationships while caring for them.. including all my siblings, relatives, and any friends I had... my life has been somewhat on hold for over 7 years...and who knows how much longer.

Just wanted to say I understand how heartbreaking it is to be in this situation.. heartbreaking and lonely...

It is also very difficult me to visit them.. and visits take a lot out of me.. Its alls so hard..

(((hugs)))

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Els1eL, the way I looked at the decline was that it was part of the circle of life. I knew that my parents couldn't live forever, they were already pushing the envelope being in their mid-to-late 90's. They both had been active until they got into their 90's so I felt that they had all those extra years to enjoy their life.

I had to forget about living life, as I was too busy helicoptering over my parents. Trying to convince my Mom that they needed caregivers [which fell on deaf ears, sorry for the pun], and trying to convince my Dad that he needed to donate his car [no, he can't drive in an emergency, you call 911].

My folks passed on a couple of years ago, and I haven't got my energy back, still dealing with all the stress [now on meds], and dealing with a ton of health issues that are related to the stress.... [sigh]. Guess I can look at the photos of my parents enjoying their retirement and live through that. I do miss my Dad's sense of humor.

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Of course it's difficult to watch your parents decline, especially when you have vivid memories of them as active, vital people who raised and loved you. However, you didn't create their present situation and can only do so much to mitigate it. Do what you can for them when you can and don't forget to give yourself a break from time to time, whether it's a vacation or a long hot bath with a glass of wine and a good book. Carve out at least one day a week that you keep for you and take a yoga class, see a movie, go for a hike in the woods - whatever suits you and gives you peace. You'll find yourself a whole lot better able to deal with the tedious tasks of care taking if you approach them refreshed. I will admit to groaning when I get out of bed on Sundays, knowing I have to go deal with my mother and I used to feel guilty about it too, but the person the Alzheimers has left me with is not the mother I grew up with. This new woman is a stranger and, although I still love her, it is getting harder to spend any quality time with her. We just have to keep plugging away and hoping someone does the same for us when it's our turn.

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Thank you everyone who has taken the time to answer. Some sound advice - nothing for it but to carry on as best I can and perhaps if I try to compartmentalise my life it might help me switch off and be more relaxed.

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How many days do you usually go see your parents? How many hours are you there? Are they in the same room? Or do you have to make 2 separate visits? Do they still know you? Sorry for so many questions, just curious.

Do you feel they're being well taken care of there?

I agree with many others - you have nothing to feel guilty about. It's hard to see parents decline but I have to assume they're in a safe place and having their needs met.

You DESERVE to have some fun and have a good life. To rebuild your health and your relationships.

Depending on your visitation schedule, I bet it'd be totally appropriate for you to cut it back. For example, if you go 3 days a week, cut if to 2. Use that time to specifically do something for YOU. Or if you go for long visits, cut them shorter. I have a feeling that at their advanced ages and conditions, that long visits (if they are so) might not be necessary.

You can both visit your parents AND have a life!

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Els1eL, It's not bad to want to live your life. I think we all feel at some point that we want to live our life. I see on tv people doing different things and would like to do things also. What helps me is to try to think of my blessings and what I'm grateful for.

Do you have a friend you can go out with. It's good to be with others to take away some loneliness and boredom.
All the best

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I don't see how anyone could like seeing their parents decline. It seems like a pretty natural reaction to me. You know I was thinking the other day that I just turned 57 and my body is changing and things get harder as you get older. Sitting on the floor used to be fun when I could get up easy but now I'm sure I must look like an old feeb hanging on to coffee tables etc. to boost myself. LOL

I think as we watch our loved ones change and decline before our eyes we must remember that they have been watching themselves do this for years and it's not a big shock to them anymore. It's been a process that has been happening to them for a while just like with ourselves. So when you feel sad and can't face visiting them cause it hurts to see the changes just keep in mind that to them this is just another step in their process. It may not make you feel any happier about it but it may help you to relate to them more.

I hope this made sense. It made sense to me when i was typing it. LOL

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Thank you.

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Putting them in a nursing home was the best decision you ever made. I take care of my 89-year-old mom with end stage Alzheimer's and it is slowly destroying me. She depends on me 100% for everything and even getting her up in the morning is an ordeal. I have to manage her bowels because she will go in her diaper..or get constipated to the point she can get impacted as little as 2 days (it gets too large and hard to pass). It takes about 1-1/2 hours to feed her she eats so slow. Swallowing is difficult because she forgot how. However, I get her swallowing food by example. I let her watch me eat a small cracker and she copies me and that gets her going. I do her insulin and medications. it's a living nightmare..oh and bathing her too is an ordeal. I have no life. Everything is centered around my mom. This is no lie or exaggeration and there is not a day that goes by I wish for Armageddon because everyday living is a huge struggle for me. I also find it difficult to take myself to the doctor so I neglect my own care because she requires around-the-clock supervision and assistance with everything. Doctor pushes for a routine colonoscopy and I can't do that because I can't be taking bowel prep because my mom is that time consuming. So I'm really screwed...so please do not feel guilty. You did the right thing. Even worse--taking care of mom is going to severely impact my own retirement because I can't work..she is a full time unpaid job so I will never be able to retire. So I will become a burden to society and guess what I don't care. This is what life has brought to me.

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This is my life with my husband's grandmother, exactly. I'm told by realities (that don't visit or call except when absolutely has to) for whatever reasons, that it's my fault that she relies on me so much as I spoil her and am at her needs & wants, allowing her to run the show including my life. I do everything for her because I am able & willing as my heart just could not have it any other way, BUT I too am now depriving myself, the stress I was coping with, finding ways to reduce it, now it's my health and need to take care of myself and I'm finding it hard to do, I cancel doctor appointments, tests etc.

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Other comments are sufficient to give a boost it seems to me. Stay close to this site and keep us up to date...I was a go-to-nursing-home twice daily for ten years and it wore on me but it was the most satisfying assignment of my entire life.
Grace + Peace,
Bob

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Thank you. Yes, I am so uplifted by everyone’s comments. It’s making me feel so much more confident to face the day.

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Please don't forget to take care of yourself....even little things can add up in what I call "the bank of me", such as a good cup of coffee, watching the sun rise, etc. I went through a very rough time as my Mom was in my home bedridden on hospice, but I had to manage most everything such as bowel and wound care, (the wound she got in a NH when she went in for rehab after a hospital stay). She also had a catheter I had to empty several times a day. I was tethered to my home watching her decline and the amount of emotions were often overwhelming. I just did my best to keep her clean and comfortable. The only "me time" I had was from 3;30 am to 6am...then once the day started I was in and out of her room until bedtime...also checking on her multiple times during the night. I basically put all hopes and dreams on hold. It did not help that others who were done with caregiving hammered me with bragging about their fun lives. I had to shut this out and go on auto pilot. Remember to take care of yourself, take it one day at a time. On the days you go visit perhaps you could treat yourself extra to something you like, even a small thing. It also helped me to write things out in a journal.

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You went through a far worse time than me. Hugs and love to you and thank you.

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Els, I understand what you say you feel. I too dread to go see my dad in the NH because he’s so unhappy there, he’s not the dad he used to be, and he wants to die. He’s 97 and I don’t blame him one bit. Usually when I go it’s not a pleasant visit as I’m usually in a role of hearing complaints and seeing him cry. It is hard. It’s taken me over a year since he went into the NH to realize that for me it’s not healthy to become obsessed with seeing to his happiness or trying to regret that he’s not how he used to be. It is what it is. Once I accepted that I made some peace with it. You say guilt but what I suspect you feel is just the dread of seeing them in this shape and that perhaps you shouldn’t feel that way. Well newsflash...you are having normal feelings. I do a lot of praying in my car before I go inside and ask the angels to go with me and to help me say the right thing. If you don’t pray or believe in divine spirit then ask the universe to guide you. Don’t go as often. Yes..you deserve a life. I remind myself that my dad had a wonderful life up until 1 year ago and always did what he wanted. There is no reason you can’t either. Once you decide it’s ok to have a full life at 64 (I’m 66) then do it and then see your folks when it works out. They’re being cared for in a place where, yes, they will end life. But better there than a fall at home where no one finds them for days. Hugs to you!!

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Thank you so much. Yes I do become obsessed at times with taking on the responsibility for their happiness and I need to try and stop that. I do pray and it does help. Thanks again for your sensible suggestions.

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Hi,
Without going into my whole story - ( and neither of my folks have or had dementia or memory problems ) they did of course age and have illness ( brain tumors, quad bi pass, severe neuropathy, broken or fractured bones from falling ..........). My mother's health declined so much while she was trying to care for my dad - and I was helping take care of both of them with laundry, groceries, dr appointments, helping them to get bed nightly, taking care of maintenance issues that come with living spaces...etc) All this said - I really thought that by being there, doing as much as I could ( along with the worry and stress and sadness that they were not able to do what they wanted due to physical problems) that IT WOULD HURT LESS because I was there - running myself ragged and emotionally spent. NOPE. My learning moment : It still hurt when my dad passed. It has been two years and - not that I am depressed - but the pain I feel is just as bad as if I had not been with him at all during the last 10 years of illness and decline. My mom's health has slowly improved in between falling and breaking her ankle - but I am managing to keep boundaries so that my health does not fail ( either physically or emotionally with stress). I still do all laundry and grocery shopping , errands and talk and text her everyday - but have learned that losing them will hurt period --- if I see them once a year or if I see them daily.
I get some peace just knowing that my dad made it to 80 as so many people don't.
Please take time for yourself and enjoy the days - no matter how you spend them.

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Thank you. Yo make a lot of sense to me. Yes I seemed to feel the more I did for them, the less it would hurt - absolutely no! Hugs to you.

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IT is so very difficult to see your parents like that, and i'm sure it is for just about everybody. Everyone handles it differently. I suppose depending on what kind of relationship they have had with their parents all their lives and what kind of emotional stability and nature they have. And I guess that would have something to do with how they handle it.

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Thank you. Yes.

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I believe one of the reasons we feel so broken hearted is the love we have for our parents. They were the strong ones, the providers, the ones we could turn to and who are supposed to lead us. And now, they are dependent upon us and it is hard to see strength ebbing away so slowly. There is also the feeling of inadequacy on our part. Our parents provided for us, but now we are - in cases such as yours/ours - watching helplessly and there is nothing we can do to make it right. It is okay to feel this way, and yet we should not let it control our lives. Find ways through friends, family and organizations to take time once a month for several days, to refresh yourself and sustain your heart and mind. Let your heart be at peace with the situation without the feelings of guilt and shame you are experiencing.

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Thank you. You are so right.

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I understand! My parents have been miserable throughout their 70s, which has been the past decade. I am an only child and seem to be their only friend. Dad has been in memory care for 2 years now (age 80), mom lives alone (age 76). I check in with my mom daily and visit dad twice a week. There is guilt anytime my day is not 100% structured with work, household chores, visiting my dad, or doing something for my mom. I honestly get about 2 "fun" days a month that aren't just one big to-do list, and guilt is hanging over my head on those days. It's hard because you want to reach out and live life but you spend so much of your time and energy (physical and mental) living in the world of decline :(

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I so hear you...even the fun days seem like work to me now.

They no longer feel like the get a way they use to be......it's difficult when you are in so deep to get out of your head for any length of time....

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If you could ask your parents before Dementia took hold what they would want for you, their child, I bet more than anything they would want you to take care of yourself and enjoy your life. You are a loving person who deserves to enjoy your healthy years. I often experience the same grief and sadness seeing my mom who is afflicted with Alzheimer’s. Try to treat yourself with some of the love and care you give others so generously.

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Thank you.

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Because it IS heartbreaking!
I'm in the same boat! Watching my dad in the slow decline....

One thing I realized is that I cannot live his life for him. This is HIS journey, not my own. I can bring only support and love, yet I cannot do it for him or take it on energetically....
I also bring little things to make him happy. Favorite foods, movies, photo books, and talk to him (about whatever--mostly news from the Good News Network).

Are you an empath?? Read this for understanding:
https://themindunleashed.com/2013/10/30-traits-of-empath.html

Release any guilt! It's a false thought. Just let that go!

Write down all the things you would like to do. Start making baby steps to start living your Life more fully. Forget your age! 60s are the new 50s! Any form of exercise will release endorphins naturally. Take up something, even just walking around the block several times.

And know, you're not alone, sister!! We support YOU!
More power to you to begin!

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Oh are so kind. Thank you.

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I can empathize! I've been trying to understand the range of emotions I go through with my Mom. I think it's experiencing the stages of grief over the loss of the person we once knew, exhaustion over the constant stress, anxiety over their safety and well being and, as someone who likes to be in control, not having much control over what is happening. Like you, it's hard to get up some days to face another round of all those emotions. But, we do it because we love our parents and want the best for them, given their current situation. I've almost made peace with myself by repeating that I've tried so many things to help make life better for Mom and, if I'm honest, none of them worked any better and nothing will bring back the person I once knew. Since Mom is now living in the moment, I try to do the same. I handle the terrible phone calls by saying "this too shall pass" and by the next phone call, it probably has. Yes, there will be more emotionally exhausting phone calls and visits but I just have to keep up my mantra - I've done all I could and now I just need to be OK with how things are right now. I wish you peace on your journey, know, too, that you are not alone. That has helped me tremendously!

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I appreciate your comments. Thank you.

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I know it's hard. I'm right there with you, felling depressed seeing my mom, resentful of sisters who've abdicated all responsibility to me, and wanting a life of my own. I'm walking 5 days a week, I see a counselor weekly( which I never have before now), get out for lunches with friends & I got on some antidepressants! It's impossible to see your parents decline and not be effected if you are a good human being. I didn't even have a great relationship with my mom, but that doesn't matter. I hate seeing others decline, not knowing where they are most of the time.
Try to make some simple plans for you and then follow through. I started this journey at 63 and will be 67 soon. We do deserve a life of our own while caring for our parents. I've learned that takes practice. My best to you! I hope it helps to know you are not alone. God bless!

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Thank you.

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Just to add a thought--we see our parents decline and we know this is also going to happen to us.

It can't be avoided, unless you die young. Even then....everyone is going to suffer some indignities with life.

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When our parents heard the obstetrician announce, "It's a girl!" they never imagined the time in their life when that girl was caring for them in illness and old age. The birth of a baby, a joyous occasion, is followed by sleepless nights and tender care and lots of patience born out by young adults. But let's look at the aging process which is not for the feint of heart. Little by little one's abilities are compromised and the adult child is witness to this. And, frankly, we the adult children know that we aren't far behind in this process. You are fortunate in that both of your parents have had a very long life, but you also are in the same "club" as me, where you found yourself caring for two very old parents. It is a very difficult job indeed! Please keep visiting your parents. Before you visit, ask yourself how you can make the visit better for you. Bring music, a treat, create a "shape" or purpose to the visit. I used to give my mom a manicure, for example. I played dominoes with dad. I don't know how far along your parents are in their illness, but even if they can't interact, you can bring some sunshine into their lives, and don't forget to say a cheery hello to other residents there. Now, about yours. Please consider delegating some of the visiting to others. Are there any relatives or friends who could stop by? Is there a health care worker who used to help them at home that you could hire to spend an hour with them? When people have a terminal illness like cancer, their family goes through some of the stages of grieving before their death. Why would the diagnosis of dementia be any different? You might benefit from talking to someone who can help with that aspect. Try contacting a hospice organization near you. Last but not least, you need to work in some goals that improve your mood and life. Try to fit in a little walk everyday. Get some sunshine, look for positive, forward thinking activities. You can do it.

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Thank you for your positive comments.

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There is little I can add to what has already been said. It is difficult watching parents decline from the strong, vibrant parents to the stage they are now.

It has helped me tremendously finding this website. I no longer feel alone and isolated - I know others are going through the same things. So definitely stay in touch and come back as often as you need to remember that and grt support!

Therapy is also another avenue. Local senior centers usually can point you to therapists that have experience with caregivers.

If you are looking for things to do and don’t wont to go alone (maybe lost touch with friends whilst caregiving as I did), try meetup.com. Search for groups with your interests. There are groups for walks, dining out, going to see a movie, etc. I’ve made some very supportive friends there that have similar interests. Some even call to see how I am and to get me out of the house.

Good luck to you!

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Thankyou so much.

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I often ask myself the same question. I have watched moms sickness slowly take away her ability to live independently. It is extremely sad and I am often overcome with emotion.
The only thing that helps me is to open up to the sadness and allow it, sometimes for a night or a whole day.
Then I have to ask myself what am I making it all mean? What are my thoughts behind my sadness and can I change them at all?
For instance:
My mom is dying
My thoughts about that are vast but it makes me feel out of control and then my feelings get out of control.
I try to slowly change my thoughts.
To something like "My mom is dying but is here now, how can I make the most of this situation?" or "how do I want to show up for her?"
I want to be a loving daughter who honors her life. She wanted me to be successful and productive. This thought changes my out look.
If my mom wants me to be successful and productive then laying in bed is not honoring her.
I make a plan that includes her and makes me feel good. Like a movie day, a homemade dinner for both of us or a manicure. I am then showing up for both of us and spending quality time with her.
It is a balance, some days are easier than others but I want to live like she wants me too. She does not want me to spend all of my time with her but doing things that move me forward in my life. I am sure your parents want the same for you.
Personally guilt leaves me spinning and not enjoying want I want to do.
What can you do that will not make you feel guilty but serves both you and your parents?

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Sad to say there is no way to avoid such feelings when someone we love is in pain or in decline. Guilty feelings go along with the natural desire to avoid sad and unpleasant situations. I still feel guilty for not visiting my dad more often when he was in decline. I lean on my faith in God to help me in all difficulties. Praying that you will find comfort in this difficult situation.

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Thank you.

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I felt the same. If I got through it, then you can too. My parents used to take care of me for about 46 yrs because I’m disabled. My mom stopped cooking for us, and then my dad stopped taking me fishing, etc. I had to do my thinking for them. My mom ended up in the NH. Mom and Dad gradually would yell at me for frustrations. Also, my brother and I took my dad to get his state ID instead of new driving license. He didn’t know what we did. Afterward, I had to tell him that he couldn’t drive, and he was furious.

I used to cry almost every not because I’ve became realized that my parents were not the same people I used to know for 47 years. They were getting worse, and worse as the time went by. It was like their souls were dying. Crying is what helps me to get through my pains. Just think of your parents who you knew have died already, and treat them as different people. Crying is God’s way of cleanse your spirits so you can move on to the next level of helping your “parents.“ Remember, this chapter of your life with your parents will end soon.

Hugs.

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My Dad passed of dementia in 2011 and my mother last month. It was very hard to go to the nursing home as it's a truly depressing place - most everyone there is just waiting to die. But I did go every single day - dreading it on many. Your parent is still there, they are just different. The family always suffers more than the one afflicted and I think that's because you feel you have to do something to make them better and can't. But do this... Find humor in the silly things they do and say - even if they are said in anger. Many lash out because they can't express themselves anymore - my Dad did! Take her for a walk in her wheelchair to be an art critic of what they have hanging on their walls - we had several great afternoons doing art critic work and even had other residents join us. Play bingo if they are able. Get a bag of candy and take to other residents with your parent (watch for those who are on feeding tubes) - those residents will also start to keep an eye out for your parent and let you know if things aren't going well. Actually, say hi to those other residents every day as many don't get a visit very often - just saying hi is like to visit to many. Looking back, I absolutely hated going some days - but I went - and I'm very glad that I did. I think I would feel more guilt had I not been there for her. Last, don't beat yourself up - unfortunately it's part of aging. They used to call it senility - now they have a fancier name. Just enjoy what time you have in the state they are at the time - they will love you for it even though they cannot express that appreciation - you'll see it in their eyes. Be gentle with yourself - it will be ok. Remember, there is no pain in heaven.

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You have every reason to feel heartbroken as you see your parents declining right before your eyes. Many, many of us in this community have, or are, going through the very same thing and experiencing the exact same emotions. Feeling some days that you just don't know how you will get through a visit is also extremely common. You are still relatively young at 64, but you must take care of yourself and allow yourself time away, both for your physical health and mental well being. My husband and I are leaving this coming Tuesday for a 10 day vacation in Mexico to celebrate our just passed 30th anniversary. My husband and I are the primary caregivers for my mother who resides in an AL 1/2 hour from us. Fortunately, we have a local daughter who also lives less than 1/2 an hour from my mother's AL and I have a sister who lives about an hour away, so they are stepping up and will be the contact for anything that needs addressing while we're away. I'm going tomorrow to visit, stock her little fridge and cabinets, made sure everyone has contact info at both the AL and the family, and I'm going to leave knowing I have done all I can to prepare. As you say, you still have life to live in front of you. Your parents at another point in their lives would have wanted this for you, so maybe let yourself believe that, although they cannot express this to you today, those thoughts are still accurate. Sending hugs for peace and comfort to you - this is a great community full of support and love.

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Well said. I am about to do the same. Found a place close by to give Mom the 24/7 care she needs so my husband and I can resume our life. Life is sometimes short so it’s best to live it to the fullest while you can because that’s what our parents would want for us.

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Why do I find it so heartbreaking to watch my parents decline?

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