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

Hi ElsleL,
Thank you for your reply - it helps me alot - I just love this website. I feel less alone. I saw my mom the other day(briefly) and it made me feel so bad. I thought about your question and thought that it's just the reality that dementia(and dying) makes one feel bad. So I struggle thru it.
We absolutely need to get in some good things while we can. I'm so glad you're not seeing your parents as much. I thought I'd write out what things I'd really like to do/see before I can't and think about how to get there.
Take Care :)

I'm 60 and dealing with 1 parent dying w/dementia and cancer and the other not making good decisions. There is a 1st class circus going on at their house 'cause my Dad won't put her my mom in a facility. I saw a therapist today and she said I had to back away from all the drama and live my life(my health has gone into some decline from all this). This is their path not ours, we'll have our own dying some day. Please take care of yourself. It's really hard for me to see my mom in this state and I find I do better when I don't see her too much. Don't put your life on hold, I know that place and it's doing me in - so no more. Don't mind that guilt feelings come - we're human - have compassion for yourself. You're not alone.

You just want to live a little. You are entitled to have your own life. Please find ways to not let their lives swallow up yours. Make plans and then carry them out. Ask yourself what you would be doing if I didn't have your parents to take care of. Start doing some of those things.

By announcing to our children and in getting their promises to NOT do one thing or another, we’re pushing the alternate circumstances on them that they may not be equipped to fulfill.

Imho it’s better to say: whatever is best, I’m leaving it up to you kids (but don’t fight about it lol)

I should go on to say: “after all I did for you!” or “after all you put me through!” or “you know I died on the delivery table when you were born and they had to revive me!” Just kidding.

I wish we all could remember how to be nice and act appreciative for anything they do for us when we’re that old, but there’s no telling what frame of mind we’ll be in then.

Maybe we should write letters to them now while we’re cognizant of how our parents have wrung us out.

Better yet, I’m going to write myself a letter to remind how it felt taking care of mom. Hope I can read my own letter when the time comes...lmfao!

charlotte

Its normal, I'm 54 and cared for my mom for 12 years. Often times it was so hard, so many emotions. Frustration, guilt, love. The feeling of your life on hold is often so overwhelming. Just know it's ok to feel all of these emotions. Breathe and take each day as it comes!

This is not this is not really advise, but I want you to know you're not alone. My mom has dementia, she is in a memory care unit where she gets excellent care, but watching the decline breaks my heart I know my brothers and I are doing everything we can for her , but to see sometimes the confusion,the agitation, the realization that she is rapidly declining can make me want to go home and take a nap. My suggestion would be if possible find a good in-person caregiver support group a get together with people who are undergoing the same thing you are, I find it extremely helpful. I wish you peace of mind, and strength

It's hard to watch. The person that we've always known just isn't that person anymore. I've said it before. Alzheimer's is such the dang thief.  But, it is what it is now. I know I harp on this guilt thing. But when we make decisions based on guilt it just doesn't have a good outcome. You can't control what's happening with them. And, sometimes, we just have to let go a little and let things go how they're going to. Probably not a popular opinion. But we didn't do this to them and we can't stop it from happening to them. Just have to take care of them the best we can. And if you don't take care of yourself, I think anyway, there is no way you can be there for them. I learned that the hard way.

HI my dad is currently having dementia as well. I am a psw and i deal with this every day with my job but I find it's even harder with my dad emotionally and physically. He is now ready for a home. I have had to go on anxiety and depression meds. There are days that my dad needs help and I feel helpless when he is with me as a psw there are only certain things I can help out with. Especially for him not to be upset with me so it is very hard to watch a dad decline. As my dad declines I keep on having to think of all the good memories. I miss his jokes and his personality that is why I have made a movie if all the memories I have with him with a special song it helps me to watch it and remember all the good things. I wouldn't want anybody to go through this but as I see dementia and death alot but it dont make it easier. So my advice is to cherish every moment from today on. My prayers are with you and hope you can understand my advice

All the best

Don’t feel guilty. It’s hard I know. Been going through it myself. I’m finally realizing this isn’t the parent who raised me and it’s a grieving process I’m going through. My Mom has lived with me since my Dad passed away 2yrs ago. Long story short of it is Dad knew about Moms dementia/Alzheimer’s and he wanted to care for her so he had a triple bypass and died 2 1/2 months later due to hospital related infections. My parents before the disease were vibrant people who worked hard and had fun just as hard. They laughed and danced, played cards, went out to eat, movies, etc.. My emotional and physical health has taken a hit so at the age of 53 I’m going to do what my healthy vibrant parents would want me to do. Grieve, remember them happily and live what time I have left before this happens to me...since its hereditary. Lol. My husband isn’t looking forward to my older self. I found a place not far from me for Mom to help. They told me it’s time to let her go and for me to live. They can give her a somewhat independent life since they are an assisted living Alzheimer’s senior living place. Many people don’t get to live a long as our parents so I’m counting them as lucky in that respect. Unlucky because of the disease that will slowly remove the Mom I knew completely. I’m going to grieve again when she finally passes, unless she out lives me. I’m sorry to say this does sometimes happen. You’ve gotta just say to yourself over and over “I’m allowed to be happy”. That’s what our parents would want for us. Oh and therapy helps....a lot. Lol

So many sad stories. I am wondering why some of you do not place your loved one in a nursing home. At that stage they should qualify for medicaid if they cannot pay. It can make visiting much more pleasurable when you actually visit and not perform hands on care giving. Even when loved ones are in a residence which takes care of the hands on, you will find that there is still a lot left that you still will be doing, but at least you will be able to take care of yourself.
How many parents would be horrified if they saw their children in such states when it could be remedied with a placement.
One of my friends did just as you are describing around neglecting their own health. She was care giving for both parents and working from home. Her father died, her mom became more in need, and my friend had a massive MI, spent a couple of days in ICU while all of her organs failed and then she died. She had not gone to a doctor in years. The result was that her brother had to get mom and he placed her in a LTC place as he knew he could not take care of her and his own family. Something to think about.
Good luck.

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.

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.

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.

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.

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?

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!

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.

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.

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!

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!

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!

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.

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 :(

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.

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.

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.

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!!

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.

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

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.