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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.

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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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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Els1eL Jan 18, 2019
Thank you.
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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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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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Riverdale Jan 16, 2019
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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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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Riverdale Jan 16, 2019
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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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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Els1eL Jan 18, 2019
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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ThulaSue Jan 18, 2019
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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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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lucyinthesky Jan 18, 2019
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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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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Els1eL Jan 18, 2019
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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