I have been caring for my grandmother for the last 4 years. She has been battling cognitive dementia. Her short term memory is declining rapidly. She just recently moved in with my husband and I, until I can figure out what to do. My mom is not in the position and doesn’t really want the responsibility to care for her. I took control of the primary care giver. I am unable to care for my grandmother full time, because I work full time. What should I do?

I think guilt is the wrong word and I fight it on the forum all the time. Semantic matter. You are not a felon. You don't do injury to people for joy. You are not evil. You have nothing to feel guilty about.
To me it is grief pure and simple. There is honestly no real answer to what happens to us when we are old and helpless and it is loss after loss after loss, but certainly the answer is not that our children and our grandchildren give up their lives for us. Do the best you can to get grandma placed in the best place she can afford, and do the best you can to support her. She might have a short time only, but she might have many years. You don't mention her age. We have a caregiver caring for a 101 year old parent.
You are doing your best. You have a limitation. My own limitations would not have seen your Grandmother through four years. I could never take on this care. I was a nurse and I loved it very much, but it was one shift, and at the end of my career one shift three times a week. Well paid. I never was special at being a parent, I think, but I would have failed completely at in home care for an elder.
You are doing the best you can. This is your one life, imho. You won't get another. You need to live it.
So sorry for the grief. To me guilt is a way to suggest that everything can be fixed. It can't. It is a way to stop the mourning and the moving forward. To me, guilt should have no entry in this.
I remember the brief shining moment when my beloved bro was diagnosed with probable early Lewy's Dementia, that I stood and said "If you were any kind of person at all, you would move in with this man who was the best man you ever knew and you would take care of him." As I said. Shining moment. Very brief.
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Reply to AlvaDeer
Britt93 Aug 7, 2020
Thank you!
My mom had dementia from a traumatic brain injury. She lived with my dad for five years until her paranoia and wandering was beyond exhausting and too much to handle. I cried interviewing memory care facilities. We found one nearby that smelled clean, had cheerful carers, and nice activities and a garden. Then I felt like the worst daughter and my dad like the worst husband ever. We moved her in and within a week she was at home at “college” and “helping”. Oh my gosh. My dad could be a husband again, not a nursemaid, sitting and holding her hand at activities. I could be a daughter and do the same. I had cried for nothing. It was AMAZING. Sure there were moments and frustrations but she was with people who understood what she needed mostly and had compassion. I recommend It if the parent can afford it. Also we were able to get tax deductions for my dad as it was medically necessary. I had cried for five years. Now visiting I knew she was safe and content overall. She had aphasia so that made it very hard. But I agree with others. It’s not guilt as much as extreme grief. When she passed we both felt so glad we had done everything we could to ensure she was safe and loved all her life. Plus my dad didn’t have the heart attack which was likely with her at home. They had two years with him visiting almost daily and doing the exercises art and music together!!
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Reply to TBIdaughter

Well, if you can sort through the nonsense here in the comments to find the pearls of wisdom, then you're all set. Blanket statements saying it's 'always' best for a loved one to live with a family member are flat out wrong. One size never fits all in life. Even with clothing, have you noticed that? :)

Dementia normally reaches a point where in home care becomes literally impossible. When grandma is smearing her feces all over the bathroom walls, you will then understand why. Memory Care ALFs hire people to care for these residents 24/7, in a safe environment where they're fed, entertained, bathed, and allowed to socialize with people their own age who are suffering the same issues as they are. It's a win-win situation for all concerned, and nothing you should feel guilty about. My mother is in a Memory Care ALF herself and she's alive to this day BECAUSE she's there and getting such a high level of care. I have no doubt about it at all.

Others here on the forum who feel the need to be martyrs and like to tell the rest of us why we're 'wrong' by placing our loved one in residential care may haven't even cared for a loved one, ever. Remember; this is the internet and wherever anonymity is at play, liars roam free to say whatever they want. And to lay on the guilt, nice and thick. We have a few who come back to leave the same guilt ridden comments over and over again, like broken records. Just take what you like and leave the rest, okay?

You work full time and have enough on your plate without adding to it. 4 years is enough and I applaud you for all you've done to date. Placing grandma in care does not mean you'll never see her again, or that your role is finished. It isn't. You'll still have plenty to do for her as a granddaughter again instead of a full time care giver.

Best of luck!
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Reply to lealonnie1
Sarah3 Aug 11, 2020
I feel this is disrespectful of the fact there’s other cultures where things have a different perspective- I was hesitant to post that bc on the Internet some like karsten remarked are apparently so fragile they cannot respectfully allow other views or cultures to weigh in.
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Totally agree with Alva Deer. Think of the senior living facility as a safe place for your grandmother. When my father in law started to regularly wander off from home, in the late afternoon in the middle of winter, we knew it was essential that he be moved to a facility specialising in dementia patients, for his own safety. I was so worried that he would get lost on one of his walks and die of exposure in the cold evenings, and just wanted him to be safe and treated with respect and dignity. Now it sounds like your grandmother isn’t doing this, but there will be other behaviours that will make caring for her a real difficulty for you. Placing her in a safe and caring environment suitable to her condition is an act of love and kindness on your part and you have nothing to feel guilty about.
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Reply to Chriscat83

There comes a time when we have to face the reality of a situation and not just sit and wish things were different. Because they aren’t. Yes it is sad that this is the choice to be made, but she will get care that you are unable to provide. You love her and that is evident because of what you call "guilt" (I prefer to say "wanting things to be otherwise"). Guilt implies you did something wrong but you aren’t. You do the best you can with love. That’s all any of us can do...we are not perfect humans.
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Reply to Harpcat
deblwalker Aug 11, 2020
Well said. My daughter almost daily has to remind me that my Mother is in a safe place where they ensure she takes her medicines timely, eats well and doesn't fall. While she was home with my care and caregivers, she was falling at least three times a week (often more). It truly is sad given the current COVID crisis, but a reminder that nursing care centers give the care to our loved ones that we ourselves are unable to.
Dear "Britt93,"

You already have been caring for your grandmother for the last 4 years, your mom as you say is not in the position and really doesn't want the responsibility to care for her. I'd really be curious if your mom feels any guilt because if she doesn't, why should you? You've already shown what a responsible person you are - you have a full time job, you take care of your husband and your grandmother.

My parents never took care of their parents and my husband's parents didn't take care of their parents. Although, with my FIL he already had lost his own dad when he was 12. But, my husband and his older sister took care of their mom's mother and my husband was the one who found her when she passed away without anyone's knowledge.

When my dad passed away in 2004, my mom was 79. I ran back and forth from our house to hers for ten years. I couldn't do it anymore. I tried but, it was no longer practical especially when my mom was getting lost while driving, went missing one night where it ended up being a police situation and I could see she was no longer handling her finances meticulously. She wanted to stay in her house for the rest of her life. I felt guilty for moving her out of the home we lived in since 1968. She had been diagnosed with Alzheimer's in 2014 and we moved her into an ALF in early 2015. It would be the beginning of many, many hard decisions I would have to make.

She is now in a different facility in their memory care unit. There is no way I would ever be able to give her the type of ongoing, round the clock care that she needs. I have no problem admitting that I am not good at the physical aspects of caregiving. I do all the other tasks on my own and of course my husband pitches in. I'm an only child so there is no one to share in the responsibilities. She is 95 and has five siblings who are still alive but, who all live in other states and do not have anything to do with her care. Also, they are not a support system for us.

So I look at the guilt aspect in two ways - 1) I really am still my mom's caregiver it's just now she "lives" somewhere else but, I still do a lot of the things I did before - just not the meals, laundry, medication handling and the physical components of caregiving and 2)honestly, I'm so busy with the rest of the caregiving responsibilities that I actually find I don't even have the time to "feel guilty" so it's not like I spend all my time when I don't have hands-on caregiving to do wallowing in guilt.

In essence, it take all parties to make an adjustment which is true of any type of change - good or bad. I sure hope you can come to a place where you realize it's ok to turn over the responsibility to a good care facility. I've watched my life pass by quickly from the time I started the caregiving journey at the age of 41 to now nearing 58. You just have to ask yourself if you want to do the same. I wish you and your family the best as you try and make a decision that will work for everyone.
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Reply to NobodyGetsIt

Don't look at it as you failing, look at it that this is in the best interest in the person you need to place. It is very difficult to make this choice, but, you must act in the best interests of the person you are placing.
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Reply to thingsarecrazy8

Imho, you were a stellar caregiver to your grandmother! I used the past tense because it's very clear that it was never your responsibility to care for your grandmother from the onset. Let alone that your mother is not in the position and doesn't want the responsibility is almost a moot point because your grandmother needs the care of a medial professional in a facility. You are to be praised. :)
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Reply to Llamalover47

I had this problem, my mom lives with me since 2011, check with the Department of Aging and Disability in your state under Community Base Assistances CBA program. The state pays for full time caregiver, while I work and provides respite hours as well.

My mom was in a nursing home for a year and it was horrible, so I took her out. You can put your grandma in, but visit often and at different times to see if she is being taken care of. Sometimes guilt only means that you care, but recognize your limitations too.
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Reply to Mikhull

This decision is one of the hardest things that most of us will ever have to do.

I bawled like a baby when I had to place my dad, for a month every time I visited, it was so difficult. So bring lots of Kleenex when you go visit her.

I got through it because it was the best solution for his needs and care to be met. It sounds like it is the same with your grandma.

You will still care give for her. It will just not be the hands on 24/7/365 that you have been doing. You will make sure that she has enrichment activities with you, you will bring her favorite treats and you will make her feel loved in the moment. Then you will go home to your family knowing that she has caregivers that are well rested and available 24/7/365 to ensure that she is okay.

Learn to pick your battles with a facility. They won't respond just like you, but most of them really do the best they can and do take reasonably good care of our loved ones. So be prepared to adjust to her having to wait for her issues to be addressed and learn that she is not going to be happy about being there, most importantly, learn to put the biggest smile on for her and act as though it is the best place in the world to be, this helps their perception of their new home. Speak up if you see something wrong and follow your gut, if it feels wrong check it out, but never let her see or know what you are doing behind the scenes.

Remember that caregiving is a thankless, hard job, so smile to her caregivers, say hello and ask about them if they have a moment. Do something special that tells them how much you appreciate all they do for her. Homemade goodies are always appreciated and they say so very much to the people that receive them. Remember that you wouldn't want to only be spoken to when someone has a complaint, so try to keep your balance in dealing with any concerns.

I have had 3 grandma's that have ended up in care and I know how hard it is to see them fail. I found that just loving them in the moment and doing things that brought laughter was some of the best times ever. Best of luck finding those moments with your grandma.
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Reply to Isthisrealyreal
NobodyGetsIt Aug 12, 2020
Dear "Isthisrealyreal,"

Your comments were good reminders as well as reassuring that I've been on the right track over the past five years with my mom being in two different care facilities.

Just like you said, I've learned to pick my battles when it comes to dealing with the facilities. Also, I've always been thankful and appreciative to the staff doesn't matter what position they hold - receptionist, dining room staff, maintenance man etc. But, I also do stand up for my mom when necessary. On those occasions, I've tried to let them know I understand their position to the best of my ability but, they need to understand where I'm coming from as my mom's advocate.

Thanks again, for the reminders!
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