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?
And then to make matter worse, you're sad because "you see your own life passing you by" - you said that you can't do much about it - but you need to do something about it. Such as, couldn't you hire someone to give you some relief for a few hours and you can take a nite off and go out? And couldn't you rent movies for her to watch in her language? It'll keep her more occupied during the day. Or, there's lots of coloring books w/colored pencil sets and paint sets on Amazon for seniors with dementia/Alzheimers. Going forward, I hope you can take "guilt" out of the equation and have a new mindset!
When I say she's better than me I meant physically for her age and being happy is when she has people around her not alone in her room bc that's when she becomes destructive. She needs attention every time she's up! It has past the folding or coloring book time( I tried)! She only is happy when she is with others bc she was raised in a big family and she misses that. Always she asks where is everyone and sometimes she cries and calling their names! It breaks my heart🥲 As soon as someone is by her and talks to her she's all happy.
I understand what you're talking about. I want my freedom so bad. I hired one caregiver who comes 1 to 2 times a week for 4-5 hrs (as much as I could afford) so I could do my own doctors and errands. But obviously that's not enough. After 7 years of caring for her I have lost my own identity who was so creative, positive and energetic. Her finances or lack of it is one cause and the language is another. I have asked people to stay with her so I could take a few days vacation but they don't want to be responsible for her age issues(even with healthy body, the brain affects the organ and they go down)!
That's why I feel stuck😞
When home health is there, she understands the universal sign language such as a smile, motioning with their hands time to eat, etc but that is what she craves. And you can't be the be-all because of the nursing things you have to do.
Somehow take some time physically and in your head to do something just for you.
Sit on the porch without her for a few minutes. Go in your room while she is sleeping and listen to some music.
It's so damn hard to be on call 24/7 and not be able to turn the worry off in your head just for a few minutes.
I hope you do find some help with your Mom. But I hope for yourself more.
So look for a balance:
1) Tour facilities, find out what they offer and whether they and the residents look and smell fine.
2) Check out your finances and M’s assets. ‘Architect’ sounds rich and well educated, but my experience is that it can be a bit precarious. You need to know what M can afford – and whether you can and will help with it as well.
3) Find the support association for M’s language group. There will be one, if you look. Find a pleasant woman of the right age who will visit and talk to M a couple of times a week as a paying hobby. Start with her now at your house. Then move on to visits at the facility you find for M.
4) ‘She gets agitated ..if people don't understand her needs’. Her needs are probably fairly limited. Make a chart with pictures for each ‘need’ that she can point to. It might help, including in a care facility.
That’s one way to ‘deal with it’. Remember that M did have the chance to make different choices when she was your age, but you will never get another chance to make your own choices at the same age.
2) I was an architectural designer but for her sake I brought her to stay w me and I stopped my career to care for her(language). I'm not rich by the way. Especially now!
3) I have one person coming to care for her 1-2 times a week (as much as I could afford) so I could do my errands and own doctors. But obviously that's not enough. I need a a big break.
4) I forgot to mention after her stroke 2 years ago her vision/ perception has changed. Her brain doesn't distinguish pictures, tv shows even her spoon! She ok only hears and interact and as the doctor said she sees blurry😞 that makes it harder to see pictures as you creativity came up with the idea in the facility.
Someone said assisted living waivers could provide finances for her in some facilities. I'm going to check into that if she's qualifies🙏🏼 she probably won't be like this anymore and soon or later she'll have some serious complication like another stroke. That's the time I have no choice.
But till then I'm taking it day by day😞
So look for a balance:
1) Tour facilities, find out what they offer and whether they and the residents look and smell fine.
2) Check out your finances and M’s assets. ‘Architect’ sounds rich and well educated, but my experience is that it can be a bit precarious. You need to know what M can afford – and whether you can and will help with it as well.
3) Find the support association for M’s language group. There will be one, if you look. Find a pleasant woman of the right age who will visit and talk to M a couple of times a week as a paying hobby. Start with her now at your house. Then move on to visits at the facility you find for M.
That’s one way to ‘deal with it’. Remember that M did have the chance to make different choices when she was your age, but you will never get another chance to make your own choices at the same age.
And entertaining Mom is probably last thing on your mind as I am sure with no energy left you do very little for yourself.
So think about it, you sacrificed a lot as well for your Mom.
Please, no guilt. We often repeat on this forum, no guilt on caregiving journey!
You asked “
how do you get out of this swamp? “
Per your replies you seem not willing to place your mother . Try to get hospice to come in .
But know that this is very little help .
Your mother may be approaching end of life. It is not a happy time no matter where your mother was living . Remember that at any time you can place Mom , as this will get more difficult if not impossible for you to continue.
Your mother is declining , care giving for her 24/7 is or may cause you physical , medical , psychological, emotional problems , possibly even cause your own ( premature) death .
Do you think your “ loving , innocent “ mother would want your life to be like this ? Or would your mother that you knew before Alzheimer’s want you to take care of yourself .
When a parent has no assets to pay for private care , there are only least bad options left. You didn’t cause any of the situation she is in . None of us owe our parents a magical fantasyland happy death . This is the end of your mother’s life . It should not be the end of yours .
Why is home health trying to drop her if she is not able to walk to the bathroom or hold a spoon to feed herself as you described ?
How about placement at least temporarily so you get some respite ?
Hospice will come in and help you with supplies and equipment and a Nurse will come at least 1 time a week to check on her and order medications (if needed) and a CNA will come at least 2 times a week to give her a bath, shower or bed bath. And the CNA will order supplies.
And a benefit of Hospice is you can request a Volunteer that will come in and sit with mom. This could be a weekly visit or a once in a while visit. (they can not do "hands on care" though so the visit is limited to a max of 3 or 4 hours)
And another benefit is you are able to get Respite care for almost a week each year. This is covered by Medicare, Medicaid and other insurance.
Hospice is not necessarily "6 months" or fewer. As long as there is a documented decline a person can remain on Hospice.
As I said in one of my reply she was on Hospice but they dropped her bc she's doing well physically and not dying!
I am not familiar with respite care. How does that work and how to apply?
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.
Absolutely not true.
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🥲
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.
I am not an entertainer. My girls will contest to that. I supplied the materials, they the imagination. My grandson...Grandmom does not entertain, she bakes cookies. Am not a game player or a card player. I don't do crafts. That is one reason, after Mom lived with me 20 months, I took what money she had and placed her in a nice AL that took people suffering from Dementia. She was able to walk around inside the building. Had socialization, activities and entertainment. I feel she was happier there than here.
"Hear my prayer, O Lord, and with thine ears consider my calling. For I am a stranger with thee, and a sojourner, as all my fathers were. O spare me a little, that I may recover my strength before I go hence, and be no more seen."
In one of Bob Dylan's songs (or albums) titled "Tangled up in blue" he used a line I like a lot about going through tough times, singing that sometimes all you can do is "Keep on keepin' on."
But there is, in fact, a lot of other things you can do. Others here have plenty of ideas, no doubt based on hard-won experience..
Good luck!
A) Happiness isn't really an option for most in the latter stages of the aging process. It is not a happy situation. As an older person they have already lived long lives full of both happy and unhappy times. This particular time is "UNhappy" for them, and for you as well as you stand witness and attempt to help. There's little to be done about that.
B) You didn't cause this and you can't fix it. Guilt requires causation so it's an inappropriate "feeling". Words matter. Use the correct G-word here which is "grief" at all the loss you are witnessing for one you love, and for the absolute robbery it causes of your own life.
C) Throwing yourself on the funeral pyre of your parent will not help your parent and may well kill you or make you WISH you were dead.
D) What particular language does your parent speak.? There are many latinx and many who speak tagalog in care centers. In fact care facilities have a really good mix often.
You have choices to make. You are a grownup and must make them for yourself. There are here no good choices whatsoever, so you must choose the choice that gives you the best chance at a whole and active life of your own. Or NOT choose it. But there will be some relief in understanding that you have made the best choice you can for yourself. And that it is YOUR choice.
If you choose to continue caregiving for whatever reasons of your own then understand you are not God and not a Saint and it's a kind of hubris to think you are, or that you have power to change things. Determine to get all the help you can; take respite. Get a care contract in place with an elder law attorney so that you can be compensated for shared living costs, food and etc. These funds can go toward respite and some in home help.
My heart goes out to you. You sound completely overwhelmed and it seems you are asking more of yourself as a human with limitations than can/should be asked. You may need to see a counselor, either Licensed Social Worker in private practice for counseling on life transitions or a cognitive therapist to help you comb out the options you have. None of them are pretty, none of them are without tears for EITHER you or your mom.
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.
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!
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.
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!!
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 .