She has severe hearing loss & dementia so phone calls are out. I can’t get them to visit more than 2-3 times a year and I’m living next door and see her daily.
We thought the same thing when my Mom was still at home - that she’d never allow someone else to help, but we were wrong. She adjusted quite quickly and 2x weekly soon became 24-7. There is no reason on earth for you to feel guilty and if your siblings won’t help you THEY should pay for some kind of respite. This is not a disease that one person can manage alone, as it will only get harder as time goes on. (Harsh, but unfortunately true).
You’re right! I do need to look into getting some help and you’re so right about not being able to take it all on myself if I want to keep my sanity. I’ll call Hospice and see what my options are. I know it’s only going to get worse. Such an ugly disease and so hard to see your parent deteriorate right before your eyes.
Thank you for your advice and your feedback. I know I’m not the only person who is going through this. It’s so sad that so many people are experiencing the same thing. I don’t wish this on anyone. Take care and hope things get better for you!
Cheryl MD Thanks for your kind words and sharing your story. Things WILL get better and you have to know that you are doing the right thing looking out for your mom. You also are setting the best example for your son in what it is like to love someone and care for them when they are in need. Please check out hospice and see if they can help you, and suggest whatever respite care might be available. Good luck and God bless you!
Gail4mom, Thank you too for your kind words. I really didn’t mean to rant like that but once I started, I couldn’t stop. It’s obvious i’m burnt out. I definitely need to check out hospice. It was offered to us but I didn’t think it was time for that yet concerning my mom since she isn’t experiencing any pain yet. I wasn’t thinking of hospice to help me but I clearly need a break. I know my mom, and she will not be comfortable with anyone but me. She makes me feel guilty if I want to get away for a few hours and gets paranoid when I’m not there. On the bright side, I know later when my mom is no longer here...I’m going to be grateful that my son and i did get to spend this time together with my mom and feel good in knowing we took the best care of her until the end. I think I just needed to vent to recharge a little. I will look into hospice. Thank you! I hope everything works out for you and your mom.
I’m sorry your siblings don’t get more involved and I’m sure you think they should just want to see her and help you instead of you having to ask them. And that’s just one gripe among so much more that you aren’t mentioning. Your mom is very fortunate to have you for a daughter. You’re a wonderful person and a loving and caring daughter for taking such good care of your mom all by yourself. It’s one of the hardest things in life to do. I’m in the same boat...I get what you’re going through. Last year, I lost my husband and my son lost his father suddenly and unexpectedly to a routine medical procedure. Our world was turned upside down in an instant. Being a stay at home mom for the past 9 years, and now with my husband gone, I could no longer afford to keep our home on my own. The death of my husband, having to sell our house and forced into making quick decisions, what items to keep and what to let go of (which more than ever held sentimental value to me) was both very stressful and incredibly sad. Thankfully, I made out well from the sale of our home. It only made sense to move into my mom’s house while I figured things out and reassess our (my son and I) lives and while also being able to be there for my mom. It was a win win for all of us at that time which will be almost 2 years ago. Since moving to my mom’s, her health started to rapidly decline. We thought it was because she was just getting up in years. She now required more and more help doing pretty much everything which made it obvious I was not going anywhere for a while. My mom is 86 now and was recently diagnosed with terminal cancer with only 6 months left to live along with dementia which is rapidly getting worse this past year. She has limited mobility, memory non existent, limited communication, hard of hearing, incapable of making decisions, can’t cook, can’t drive, can’t clean...basically unable to contribute and needs help with everything. She requires around the clock care and I am her full time caregiver. It’s 24/7 total care and it doesn’t pay a cent. I have been living on my savings as I’m unable to go back to work. I know it isn’t my mom’s fault and she can’t help it and I remind myself constantly. Sadly, her condition is going to continue to get worse. I am 53 and I have two older brothers. Both brothers don’t have any children and only one is married. They both live very close (5 & 15 min. away).They both know what I go through to an extent and the sacrifices I was forced to make. Neither brother offers any help and rarely come around to visit mom. They feel since I “don’t work” as if that’s my choice, I’m the one who gets to take care of mom. These past two years have been the hardest, most trying years of my entire life. I haven’t even been able to take time to grieve the loss of my husband properly and not being able to fully be present for my son who is equally trying to deal with the death of his father along with the pressure of transitioning from graduating high school to now attending college, it’s a stressful time for any kid without throwing into the mix losing a parent. I am very disappointed in my brothers for not stepping up to help our mom and dismissing my feelings and needs knowing what my son and I have gone through the past 1 1/2 years and continue to go through to this day. My son has been the biggest help in taking care of my mom but he shouldn’t have to, he’s a kid, not his responsibility. Soon, we will be going through a loss of another loved one, my mom, which we are not ready to deal with. I’m doing my best to be a good mom and daughter but unfortunately I’m neglecting myself. I always put everyone before myself and it’s taking a toll on me. I’m tired, stressed out, frustrated, angry, mentally and physically exhausted and I don’t see a break in sight. I feel like a prisoner on lock down...i literally don’t have a life anymore.
I hope your sibs visit your mom & make her happy. Best wishes!
Is this something new or is this a habit of longstanding? Our lives develop patterns that can be difficult to change without a willful effort, are your sibs willing to make it a priority? When we move out of our parent's homes and begin our own lives it is common to spend our time and energy focused on our new lives and families and contact with our birth families can become an afterthought. Families, just like friendships, must be nurtured to survive, lack of contact and communication can turn even the most loving of families into strangers with nothing in common but fond memories. Add in profound changes like hearing loss, disability and dementia and it becomes even harder because the effort is all one way. This isn't an excuse, just an explanation.
Thanks. It is a long standing habit and I’m sure it won’t change. They act like she’s already gone, sold her house and wouldn’t even help with the estate sale - not worth their time. (By the way, my husband and I still work and they are all retired.)
Thanks to all responses - I guess what I want is for them to be more concerned or caring about her, and it’s obviously true that you can’t force them to feel what they don’t feel. Very disappointed in all 3 of them. They don’t even inquire about how she’s doing. I have a 4th disabled sibling who misses her mom very much but needs someone to drive her 1 1/2 hr each way to visit. I do it about once a month, but it’s 6 hours of driving with 2 round trips.
Does she have a positive experience if/when they come? Do they? Is it worth the effort on your part to involve them? If they are reluctant to participate, does intermittent participation make managing and facilitating her care any easier on you as her caregiver? Like The Little Red Hen, if I have to cajole relatives into providing what should be joyfully offered companionship to my LO, I consider the cajoling time a waste of already too scarce minutes and hours. Congrats to you Gail4mom, for being a daily presence in her life.
Just to probe a little further - in a perfect world, what would you like your siblings to be doing? Let your imagination roam free! - but specifically, what?
Is there anything you think your mother could really enjoy, for example? Thinking "there's not much point in visiting, she can't hear us and she doesn't really know who we are any more" can genuinely put family off visiting, as well as being an excuse.
Have you asked them to visit more frequently? If you have, and they haven't, there's nothing you can do about it. We can't make people do things they don't want to do.
If you haven't asked them to visit more frequently, why? It may not have occurred to them to visit more. Ask for what you need. Their response will let you know where things stand.
How far away do they live? If it's really far it might be logistically difficult for them to visit, like if they lived in another country. How long do they visit when they do see your mom? Several weeks or more? Several days?
If you feel that their visits should be more frequent and longer in duration you can share your feelings with them but if nothing changes try to let it go. You have no control over what they do.
They could also be thinking, "Gail's right next door. We don't need to visit that much." It's a cop-out, I know, but could be accurate.
I’m sure you are correct. She was hospitalized this week and when I told my oldest sib he said - oh we were going to visit today, but we’ll wait till next week if she’s in hospital. I was so angry that I couldn’t even respond. She had been hallucinating and “seeing” him all day, very anxious that he didn’t stay longer! She asks about this oldest son all the time, so I’m making excuses for him and trying not to break her heart.
Thank you for your advice and your feedback. I know I’m not the only person who is going through this. It’s so sad that so many people are experiencing the same thing. I don’t wish this on anyone.
Take care and hope things get better for you!
Thanks for your kind words and sharing your story. Things WILL get better and you have to know that you are doing the right thing looking out for your mom. You also are setting the best example for your son in what it is like to love someone and care for them when they are in need.
Please check out hospice and see if they can help you, and suggest whatever respite care might be available.
Good luck and God bless you!
Thank you too for your kind words. I really didn’t mean to rant like that but once I started, I couldn’t stop. It’s obvious i’m burnt out.
I definitely need to check out hospice. It was offered to us but I didn’t think it was time for that yet concerning my mom since she isn’t experiencing any pain yet. I wasn’t thinking of hospice to help me but I clearly need a break. I know my mom, and she will not be comfortable with anyone but me. She makes me feel guilty if I want to get away for a few hours and gets paranoid when I’m not there. On the bright side, I know later when my mom is no longer here...I’m going to be grateful that my son and i did get to spend this time together with my mom and feel good in knowing we took the best care of her until the end. I think I just needed to vent to recharge a little. I will look into hospice.
Thank you! I hope everything works out for you and your mom.
Last year, I lost my husband and my son lost his father suddenly and unexpectedly to a routine medical procedure. Our world was turned upside down in an instant. Being a stay at home mom for the past 9 years, and now with my husband gone, I could no longer afford to keep our home on my own. The death of my husband, having to sell our house and forced into making quick decisions, what items to keep and what to let go of (which more than ever held sentimental value to me) was both very stressful and incredibly sad. Thankfully, I made out well from the sale of our home. It only made sense to move into my mom’s house while I figured things out and reassess our (my son and I) lives and while also being able to be there for my mom. It was a win win for all of us at that time which will be almost 2 years ago.
Since moving to my mom’s, her health started to rapidly decline. We thought it was because she was just getting up in years. She now required more and more help doing pretty much everything which made it obvious I was not going anywhere for a while.
My mom is 86 now and was recently diagnosed with terminal cancer with only 6 months left to live along with dementia which is rapidly getting worse this past year. She has limited mobility, memory non existent, limited communication, hard of hearing, incapable of making decisions, can’t cook, can’t drive, can’t clean...basically unable to contribute and needs help with everything. She requires around the clock care and I am her full time caregiver. It’s 24/7 total care and it doesn’t pay a cent. I have been living on my savings as I’m unable to go back to work. I know it isn’t my mom’s fault and she can’t help it and I remind myself constantly. Sadly, her condition is going to continue to get worse.
I am 53 and I have two older brothers. Both brothers don’t have any children and only one is married. They both live very close (5 & 15 min. away).They both know what I go through to an extent and the sacrifices I was forced to make. Neither brother offers any help and rarely come around to visit mom. They feel since I “don’t work” as if that’s my choice, I’m the one who gets to take care of mom. These past two years have been the hardest, most trying years of my entire life. I haven’t even been able to take time to grieve the loss of my husband properly and not being able to fully be present for my son who is equally trying to deal with the death of his father along with the pressure of transitioning from graduating high school to now attending college, it’s a stressful time for any kid without throwing into the mix losing a parent.
I am very disappointed in my brothers for not stepping up to help our mom and dismissing my feelings and needs knowing what my son and I have gone through the past 1 1/2 years and continue to go through to this day. My son has been the biggest help in taking care of my mom but he shouldn’t have to, he’s a kid, not his responsibility. Soon, we will be going through a loss of another loved one, my mom, which we are not ready to deal with. I’m doing my best to be a good mom and daughter but unfortunately I’m neglecting myself. I always put everyone before myself and it’s taking a toll on me. I’m tired, stressed out, frustrated, angry, mentally and physically exhausted and I don’t see a break in sight. I feel like a prisoner on lock down...i literally don’t have a life anymore.
I hope your sibs visit your mom & make her happy. Best wishes!
Are you not being offered hospice services? Has an evaluation been suggested?
When we move out of our parent's homes and begin our own lives it is common to spend our time and energy focused on our new lives and families and contact with our birth families can become an afterthought. Families, just like friendships, must be nurtured to survive, lack of contact and communication can turn even the most loving of families into strangers with nothing in common but fond memories. Add in profound changes like hearing loss, disability and dementia and it becomes even harder because the effort is all one way. This isn't an excuse, just an explanation.
I have a 4th disabled sibling who misses her mom very much but needs someone to drive her 1 1/2 hr each way to visit. I do it about once a month, but it’s 6 hours of driving with 2 round trips.
Is it worth the effort on your part to involve them?
If they are reluctant to participate, does intermittent participation make managing and facilitating her care any easier on you as her caregiver?
Like The Little Red Hen, if I have to cajole relatives into providing what should be joyfully offered companionship to my LO, I consider the cajoling time a waste of already too scarce minutes and hours.
Congrats to you Gail4mom, for being a daily presence in her life.
Just to probe a little further - in a perfect world, what would you like your siblings to be doing? Let your imagination roam free! - but specifically, what?
Is there anything you think your mother could really enjoy, for example? Thinking "there's not much point in visiting, she can't hear us and she doesn't really know who we are any more" can genuinely put family off visiting, as well as being an excuse.
If you haven't asked them to visit more frequently, why? It may not have occurred to them to visit more. Ask for what you need. Their response will let you know where things stand.
How far away do they live? If it's really far it might be logistically difficult for them to visit, like if they lived in another country. How long do they visit when they do see your mom? Several weeks or more? Several days?
If you feel that their visits should be more frequent and longer in duration you can share your feelings with them but if nothing changes try to let it go. You have no control over what they do.
They could also be thinking, "Gail's right next door. We don't need to visit that much." It's a cop-out, I know, but could be accurate.