How do you deal with the guilt of not having anymore energy to entertain mom who has severe Alzheimer's?
I've been caring for my mom who has sever Alzheimer for the last 7 years at my home. Have no siblings to help me and her language barrier doesn't let me to put her in the MC. She also has no assets to pay for it. On the other hand I also have heard from people and nurses that in most facilities, they don't pay attention to them because of the ratio and they die soon!
Emotionally I'm drained and have no more energy to entertain her and feel guilty that in her last years of her life I am in this condition. I provide the best meals, medications and hygiene care etc. that's why physically she is better shape than I am and is very happy! But I feel I need to do more. Most of the times I'm stuck at home because she can't be left alone. I feel sad all the times feeling my life is passing by in this situation and can't do much about it! The feelings of guilt in other hand has given me anxiety and uncertainty as what to do. I feel stuck! Anyone relates to my situation? How do you get out of this swamp?
My back healed but my compassion started to dry up. 'Compassion Fatigue' the Councellor called it. It brought some down time, thinking time, then a wider perspective. Why do family knock themselves out? It takes a village to raise a child.. so it follows it takes a village to care for elders also. Now many 'villagers' assist my LOs. I have no guilt over this. I celebrate the wider human family.
I'm a fairly new participant in this forum. I found it while I was recovering from a back injury. A back injury that was just stupid carelessness because I was burnt out and just didn't care
When I signed in, like you I thought I was the only feeling this way.
I am amazed at how many people daily, write in feeling just like I did.
So you are absolutely not alone!!
Since you can't bring yourself to place "such an angel in a nursing home", get a hospice evaluation for mom which will give you a tiny bit of help during the week. A CNA will bathe her 2x a week, an RN will take her vitals and check her out, a chaplain and social worker will also be available to both of you.
Wishing you the best of luck with all of this.
She was on Hospice but they released her since she's not declining as they expect! Now even Homehealth is trying to kick her out because she's doing well physically!
Mental decline doesn't count per them!
I feel they're trying to drop her dry! I even have hard time to get her into a car to see any doctor! So without the home health program she won't be able to get checked!
As far as entertainment, all she needs is someone to talk and interact with her bc she loves people coming from a large family. I don't even have that energy anymore, that's why I feel guilty. I try to play music for her after her meal and all she does is clapping and wants me to be there and participate. She asks where is everyone? Leaving her alone in the room when I'm doing my duties makes me sad bc she gets sooo happy as soon as someone walks in😕 that breaks my heart🥲
Absolutely not true.
1) One of you dies.
2) You put her in memory care where she belongs.
These are the only ways that will actually accomplish rescuing you from the slavery and misery you're living in.
There is a third option, but it won't pull you from the swamp. You bring in a lot of outside hired help that takes over the 'entertainment' and the care during the day. Or you send her to adult daycare as many days a week as her income will pay for, I did homecare for 25 years and will tell you honestly no one needs to be or should be entertained every waking moment by someone else. That needs to stop today.
You know that about half of caregivers die themselves before the person they are caregivers to. So if you drop dead because you;ve worn yourself down so badly, your mother goes into memory care. She'll adapt.
Put her in memory care now. It will be easier for you both if you're still here to visit her and advocate for her to get good care in a facility.
What I did to start the process was to visit nursing homes or memory care in your area. Visit unannounced and different times. You will see what kind of care, staff attitude, cleanliness the residents attitude.
Make sure you know how this will be paid for. If no Military benefits, own a home, or have lots of savings, all (but $38) her Medicare and Medicaid can be used to pay for nursing homes.
Finally, they are not great but not all bad and don’t listen to everybody’s horror stories! They haven’t walked in your shoes. They’ve probably never even walked in into one of these places. I visited three places in my rural area that had me in tears before I even walked out the building. Then found a NH that had such a great atmosphere. Every time I walked in, all the residents are smiling. The staff is smiling with the exception of a few bitchy old nurses that need to retire. But overall I felt i chose a nice place.
My mom is the same about needing to be entertained, the NH has daily activities she can participate in. They tell me most of the time she declines but that’s her decision.
I can’t make her happy but she has everything she needs. She’s not lonely, she’s fed, bathed when she lets them, she has good medical care and I finally have some peace.
What would warrant guilt is if you kept insisting you could keep doing it on your own… which would result in mom and you suffering to death.
The difference between you and me is that when it's time for professional care in a facility, that's what husband will get. It will be the best I can find, and I will feel relieved and grateful that I no longer have to curtail my life because of this terrible disease that affects both of us. I will continue to be his loving wife and present when appropriate. I'll be proceeding according to the plan we made when he was diagnosed.
It is NOT true that in MOST facilities they die soon because no one pays attention to them! Get that out of your head. There are regulations and rules. And even if they did die sooner, I can assure you that some advanced dementia patients would welcome it. Both of my parents had dementia, and both often cried out that they wanted to die. It would have been a blessing if they had died sooner instead of living (?) with almost no brain left.
Dementia patients don't require a dog and pony show to entertain them. They sit with their eyes closed. They watch TV. They might not know what a sandwich is anymore, so they don't need to go out to lunch. Leave them alone with whatever is in their thoughts, if any. That's enough.
You'll feel stuck until you free yourself from your own expectations of what you should do. Look at memory care places, because that's where mom should be now. You might find some where there are folks who speak mom's language. You have been misinformed about the care in memory facilities, so you may have been misinformed about other options open to you as well.
You have done nothing wrong . I do fear for your health , if you fall ill then there is no one to take care of Mom and should would end up in a facility anyway .
You say Mom is in better shape than you are. Many caregivers die before the person they are taking care of .
Not all people in facilities die soon . The ones that do usually have a myriad of other medical conditions .
Call your local County Agency for Aging to see what help may be available for Mom , maybe help to come into the home to give you a break , or they can help with placement in a facility on Medicaid , and you can visit and be her advocate without having to do all the hands on caregiving.
The language barrier is a problem but you have to start prioritizing your own health . There is no rainbow at the end of this scenario , I’m sorry to say but your Mom is 93 , she has lived her life . You should not die trying to care for her .
Has she been in this country long ? Why hasn’t she learned English ? Is she a citizen ? You could also check with an eldercare attorney to see what your mother would be eligible for .
Have you checked to see if she would qualify for any services through your local Senior Center?
Is mom a Veteran or was she married to a Veteran? If so she may qualify for some assistance through the VA.
Is mom a member of a Church or any House of Worship? Do they have Volunteers that might sit with her while you do personal errands?
Lastly...You do not have to "entertain" mom.
You can give her tasks to do if she can. Fold laundry, hang laundry, dust. Put dishes in the dishwasher, peel potatoes. Anything that she still might be able to do. Granted you might have to refold towels, or dust again or rearrange the dishes in the dishwasher but it will give her something to do for a bit. And it makes her feel useful.
And there are coloring books, paint by number sets, puzzles that she can do to keep her occupied.
Mom is not even capable of walking to the bathroom, holding a spoon or fold laundry. She's lost mentally. But she likes people to talk to her even though her language is unintelligible. She likes someone take her outside and sits next to her to talk, eat and helps her to walk! Otherwise she's sleeping all day! That's what gives me the guilty feelings because I feel I can't since emotionally I'm burnt out!
I feel sorry for her because she's so loving and innocent (has been all her life). She had a tough life now this. I feel at least I could make the last years of her life happy. When I can't due to exhaustion, then I feel guilty and get anxious and depressed.
The agency to help through Medicade has helpers but they don't speak her language and if they do they don't do diaper/ bathrooms! Then I have to be here again to help her which defeats the purpose!
She used to go to the adult daycare in her language and that worked well but they rejected her due to her degree of dependency as well as walking off.
The ones that they lock the doors and accept her condition, the language barrier is an issue. She gets agitated if they don't understand her needs.
This is why I haven't been to any vacation for the last 5/6 years! No one wants to stay with her even at home to be responsible for her condition. I feel like a prisoner in my own house and doomed to this situation!
Have you contacted social services for your county to talk to a social worker to see what other options may exist? Or, contact your local Area Agency on Aging for resources?
Care.com
Nextdoor.com
Local churches (that may have inexpensive Adult Daycare programs or Elder Care ministries).
FYI you do not have to entertain her continuously. At 100 yrs old my Aunt with advanced dementia mostly sat in her chair and watched the same animated movies day after day. She liked it and it gave the family caregivers breaks. We also had her folding kitchen towels, sorting plastic utensils, sorting colorful poker chips, whatever it took to keep her occupied, if even for 15 minutes.
Bless you for what you are doing, but now you must take care of yourself. I'm sure your Mom wouldn't want you to burn out like this for her sake. As a Mom of adult sons, I would *never* want them to do this.
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