My mom is 84 and she has had strokes for the last 11 years. This is a very confusing time for me. I have a lot of emotional things going on. I live just a few houses up the street from my mom and instead of wanting to spend time with my dying mom I dread going down there and I wish I never had to go down there again. I've actually asked God in prayer 3 times to take my mom.
This is confusing because I love and miss my mom but I never want to be with her and I hope that I'll get the call saying that she's gone. It makes me dislike myself.
My mom is barely coherent and most of the time she is in a state of total misery. When awake she moans, groans and sometimes howls like a wounded animal. She grabs onto my arms and pulls me closer to her then she makes a horrible expression of fear with her mouth wide open and she looks into my eyes. When she does it I pull away. It's like a terrible nightmare. I try to stay out of her reach when I'm there.
I have to talk to her constantly while I'm there, she can't talk back. When I run out of things to say at first she starts grunting and if I don't start talking she will start howling with a horrible expression on her face.
I go there once per week to give my brother who is her care giver a break. I never want to go down there but if I stop, my brother gets so angry and then I feel bad then I have to go.
Something else that I find so confusing is that I always feel grossed out and disgusted every time I go down there. Why do I get so grossed out and why does it have to happen every time? I have to feed her and even that is gross. She drools which I have to clean up. The food often falls out of her mouth and I do have to change her diaper which I have never gotten used to.
To sum up, my mom and I were very close before these strokes which have turned her into a constantly suffering insane animal. The fact that I wish I had nothing to do with her care actually makes me hate myself a little bit and I don't know what to do. I can either stop going there and hate myself for it or begrudgingly go there every saturday and try to figure out how to cope with it.
I know it's hard but you coming around keeps her aware of who you are. Is hospic helping at all? If not it sure sounds like they should be. Prayers for your mom and you as well, please don't give up on her I know it's hard but there is help out there maybe it's time you get that rolling. Blessings to you all, Kerry.
hard to admit. I’d like to give you a little advice. My 95 year
old mother’s long journey ended several weeks ago. I was
her caregiver at home for over 15 years. She had dementia.
Before I go on, please understand that there will be an ending
and how you behave now will impact you after. You have gotten
some extremely good advice here, some gentle and some with a
bit of tough love. I hope it all helps.
So, first, there is something called “compassion fatigue or
burn-out”, but I don’t think that is your problem.
Guilt and anger, are ever present during the beginning, middle,
end and after. Everyone has experienced it in this situation. You
will not escape it, just learn the best ways to alleviate it.
It sounds like your feeling guilty that you can’t find the strength
you think you should have to deal with certain tasks. That’s OK.
However, it may be that your guilt goes much deeper and is not just
about the roll you play for your Mom. It’s guilt about not being able
to help your brother as much as you think you should. This is very
Important, you could, in the end, not only lose your Mom, but your
relationship with your brother as well.
Doctors will tell you that there are two patients in these situations,
the primary patient, your Mom, and the caregiver, your brother.
Statistics show there is a very high rate of serious health problems
experienced by full time family caregivers.
My advice to you to help alleviate your guilt is to get busy helping
your brother out. If you can not do the bedside tasks, that’s fine, there
are many, many other tasks that you can do outside of the bedroom
that will make a huge difference and help both your Mom and brother.
Taking care of these things will free up your brother so he can have
more energy to handle the hands on tasks for her.
So: prepare her food, do the wash, clean and vacuum, do the shopping,
make sure she has all her supplies, diapers, wipes, bed protectors,
pay the bills, make sure insurance and taxes are paid, deal with Medicare
and insurance company, get hospice help (it IS covered by Medicare if
she is determined by her doctor to be terminal) mow the lawn, take care
of the house, prepare meals for your brother, run errands for him,
bring him an occasional 6-pack of beer and a pizza or something special
he would like……you get the idea. Ask him what you can do to help HIM.
I promise you that your guilt will start to ease when you feel like your
making a difference and contributing in a helpful way.
Here are a few more tips: put a touch lamp adapter on the bed side light.
Get a “day clock” and put it on the night stand (I used an old I-pad with a day
clock app so it was free) play 24 hr favorite music, keep night lights on,
And the best advice I have: Get a baby monitor for your brother! Can’t live
without the monitor. Make sure you have all the correct equipment.
And last bit of advice, when you visit your mom, don’t stay too long, try
to make shorter but more frequent visits, pop in to say hi and kiss her but
don’t stay so long that it starts to upset you. That doesn’t help anyone.
In the end, remember that she loves you and does not want this situation
to distress you this much. She wouldn’t want that. It’s going to be alright.
Good luck.
You are speaking my language ! I want to cry. I was about to post a very similar rant to yours.
I am the last son of my parents and I often feel this guilt.
Its just... it never gets better. There is always some new progression of the disease just lurking around the corner. Everytime I visit my parents house it feels like I'm going back to work. I JUST got off a 60hr shift at hospital and now my dad called and says Mom has some lymphadenopathy behind her ears ......so much for getting a good night's sleep.
Just keep praying sister. That is what this website is for....never feel ashamed for expressing that feeling...at least on here.
I hate watching my mother's personality disappear ! Whilst there are elderly women 10yrs older than my mom who can still do groceries independently.
Sorry. Im not trying to take over your post...but just know. I feel ya.
Very well written and expressed - not only was "smpengwin" honest with her feelings but, so were you.
I pray that God will give you continued grace to extend to your mother while caring for her!
Thank you for being honest with your feelings, and for being disturbed enough by them to reach out here.
First of all, I want to say that taking care of an adult’s personal hygiene cannot compare to taking care of an infant or toddler. This “she did this for you, so now it’s your turn” does not equate. I remember being able to change a dirty diaper on my children in a matter of minutes, while singing or laughing with them, ending with hugs and kisses.
Compare that to changing a grown man or woman. Changing my father was at least a 30 minute or more process, and though I tried to make it as pleasant as I could for the both of us, there was no comparison in my mind between what he did for me as a baby and what I was doing for him.
Now for some advice: You say that your mother is dying. Is she on Hospice. If not, please get with your brother to get this started. Spend a day doing some research on different companies, ask around. Interview a few. Hospice can be set up the very day that you call them. They will not take over the care, but you will get an extra layer of care that your mother is not getting now. They might provide a more comfortable hospital bed or wheelchair, or medication that could alleviate some of the mental anguish that your mother is feeling. And! They will provide a social worker that you could call to talk about your confusing feelings.
I don’t know how it is in your state, but call your local Area Agency on Aging. Tell them about the situation and ask about services. My state provided a caregiver, twice a week for two hours. This would be so wonderful as respite for your brother. Does your mother have any funds? Does the budget allow for paying for a caregiver even once a week? Usually, they work in 3 hour blocks, but this, too, could give respite to your brother.
Now, to what is really bothering you - your feelings of self-disgust of wanting to walk away and praying for an end to your mother’s (or your) misery. We cannot really know what causes another person to act or feel as they do. You were very forthright in your description. I can only tell you what helped me greatly when faced with a similar situation. In my case, I had two parents who needed this level of care. And...... it wasn’t in me. For whatever reason (actually, I had many) I loathed and dreaded caregiving my parents, but I knew I needed to and I was appalled at my own lack of compassion. Of myself, I couldn’t do it, but I knew to whom to turn. I daily, asked God for his love to fill me, for me to see them as He did, to give me the strength and the power to do the necessary things. For my will to be aligned with His. It didn’t happen overnight, but slowly my feelings began to change and I saw myself behave in ways that I never dreamed I could do. I had to look for a power outside of myself. My father has passed away, and his last month was not pretty. Watching someone die is an assault to the senses, yet I was there by his side hour after hour.
There are those who are born with “the milk of human kindness” within them. I wasn’t one of them. I still, daily, ask for and depend on God’s power and love to fill me as I continue to care for my mother.
On the one hand, I can understand your reluctance to see mom, especially when she is so ill and frail. It is not easy watching our parents grow old and feeble, suffer with a devastating, crippling illness. It's a whirlwind of terrible emotions. It's not anything to feel guilty about, to wish that someone you love's suffering ends peacefully and mercifully.
That said - I find your lack of empathy for your brother somewhat disturbing. That hits very close to home for me. Since my mom has entered hospice, I haven't heard anything - not one word - from one of my sisters. My texts and e-mails go unanswered and unacknowledged. I'm sure she is feeling much like you are, and "can't deal". But - and I'm sorry - that is no excuse to leave me swaying in the wind. I'm not having a picnic dealing with this, either. This is something no one is ever really prepared to deal with - including people who are caregivers by profession.
My sister's radio silence is not endearing her to me in any way, shape or form. I have never been overly close to her, and her behavior is not likely to make me want to get any closer to her once mom has passed on. I will commend you for your once a week forays to give your brother some sort of respite, but really, he needs your support more than you might think. I can't blame him for getting angry if you're saying to him the same stuff you posted here in the forum. If your asking him to "hold your hand" through your guilt, well, that's gonna get old for him real soon, if it hasn't already done so.
If you can't support him now, don't expect him to support you in your grief and guilt once mom has passed.
The answer, I think, if there is one, is to accept the fact that this shell of a person is what has happened to your mother. Try not to compare this shell to the mother of your memories. You are not dealing with the mother of your younger years, but helping the remaining shell of a person ease toward her final release. We humans have a hard time facing the ends of lives and all the changes that come at the end. You are human. Perhaps you will cope better if you rehearse in your mind some happy memories which you can share with her when you are there. Start your stories with "Remember when..." and let your stories wander. As much as you can, concentrate on the story, the good memories.
If there is any money for it, see if you could get assistance with the feeding and changing. I understand that your sensibilities are affected by this. Not everyone is cut out to be a nurse. Your brother does deserve a break and you are lucky to have him. Perhaps, if you could visit more often in the morning or afternoon when your brother has already fed her a recent meal and your company is all that is required you might find more joy in visiting your mother. Wiping her mouth from time to time as you talk to her might be more manageable for an hour or so. Your brother can then get a short break while you visit with her. If you could also get some assistance with the hour or so that she needs to be fed and changed on Saturdays you would be a substantial help to your brother and a comfort to your mother without needing to deal with feeding and changing. You might want to check with Senior Services to see if they can help find a part-time aid to assist you. What you really want to give to your mother is comfort and company. You say she seems afraid, try to comfort that fear in her. She may also be embarrassed and ashamed. We cannot know what goes on in the minds of stroke victims. Try to give her reassurance and comfort to relieve those feelings. If you fortify yourself with those happy memories and tell them well, you may be able to comfort yourself while you are trying to comfort your mother.
My sister in law found it extremely difficult to care for her dependent mother. She did find other ways to help.
It was recommended hospice care. It would be good support for the entire family. You and your brother need spiritual and emotional support that hospice offers.
Also, think of ways you can support your brother. Let him how much you appreciate the care that he renders to your mother. Being a caregiver can be not only difficult but lonely.
Bless your mother's heart - I feel so sorry for her, but not for you! Really, do you think it's going to be pleasant dealing with someone who is so extremely hurt?
Your prayers to God should be for your mother not to suffer, NOT for her to go ahead and die so you won't have to spend time with her.
This is going to sound harsh - but you need to have compassion and sympathy for your Mom, instead of just feeling "I" this and "I" that. Please get psychiatric counseling and ask the doctor to help you become empathetic and sympathetic toward your mother. You should be concerned with how your mother must feel, instead of with how YOU feel. If you can get over yourself and start feeling compassion and sympathy instead of being "grossed out", it will go a long way toward helping you spend time with your Mom during the short time on earth she has left. Also, perhaps you can also start feeling some empathy toward your brother who I'm sure really does need a break once in a while.
No one enjoys death
No one enjoys watching a loved one die.
I imagine your mom is in a lot of pain that would account for some of her noises.
Also, some of her noises is because she can't talk to you, she can only grunt, ect.
You should pray for yourself and ask God to give you the strength to return the favor to your mom by helping her until God decides to take her.
Remember that everything you are doing for her from feeding her, wiping her drool, listening to her cry out and changing her diapers is Everything, she did for you 24 7 when you were a baby.
The situation is now reversed.
Dont pull away from your mom when she reaches out to you, Close your eyes and hug her.
You don't have to talk non stop to her.
Play some of her favorite music.
GI've her a foot or back massage, massage her head, give her some peace and happiness.
It must be very scary for her.
It is no fun dying.
Be kind and show mercy and empathy.
It's ok to pray that God takes her or heals her but you should be doing it for her, not for you.
You are stronger than you think. You can do this.
If you don't, you will be sorry and never forgive yourself.
Love and Prayers
If you run out of things to say, try reading her a book, singing her a favorite song, or praying with and for her (but please leave the death stuff for your private prayers).
If mom appears distressed, talk with your brother about it. He can mention the problem to her doctor. She may be in physical or mental anguish. A mild sedative can help her to relax. Mild pain medications given on a schedule can help with discomfort. Then, she will be less likely to grab you.
Your brother probably feels the same way you do and may be cruel or neglectful when you are not around. If there are rational answers for the questions I pose, then my advice is for you to grow up and do your duty to your brother and your mom. Unless you are lucky enough to die suddenly, you too could be in the same shape some day. I’m always amazed by some of the letter writers on this forum who have little or no empathy and imagine that old age and infirmity is never going to happen to them. It is.
it is not unusual to dread going to see a loved one who is no longer like the person you once knew. They are so changed. Imagine though if you were your mom and what it must be like to be trapped in a body with a stroke. She has it far worse than you. So perhaps think of it in those terms.
Are you a person of faith? If so you might think of yourself as an instrument of loving kindness (in my own case, as a minister of Jesus on earth). That is the talk I would give myself to prepare myself when I went to see dad in the NH. I asked my angels to be with me and to have the right words put in my mouth as to what to say and do. I put myself in my dad's shoes. No, it wasn’t always easy. But this builds character and empathy and that is so important. Your brother needs a break and if you are only going once a week then you are doing the bare minimum to relieve him.
please get help with your feelings and buck up and find ways to be more compassionate.
I also suggest that Hospice service get involved if they aren’t already. She would certainly qualify and Medicare covers it, along with her incontinent supplies, medical equipment, bathing, medications and helping prevent bedsores Etc.
I feel bad that you are experiencing so many different emotions when it comes to your mom. Part of it is that you were once very close before she had her strokes and I don't think you've ever recovered from the fact that she isn't the same and never will be. You also may be suffering from PTSD as it sounds like you've been traumatized by all of this. It's no wonder you don't want to visit her - each time you do, you become traumatized all over again. Honestly, I don't blame you - I think what you witness is frightening at least if I put myself in your shoes, that's how I would feel. It could be fear that keeps you stuck too - fear and anxiety about what you will see each time you go. I feel awful for her to be going through such agony, sometimes we have to see it from their eyes as "Geaton777" mentioned.
I've had times when I didn't want to visit my mom because it was either upsetting or draining. I knew once I went back home, I was done for the day so I could "recover." I was always close to my mom as well. She is 95 with Alzheimer's and with God's help he has given me patience and mercy when I visit (window visit now with the pandemic). The main difference between you and me is I don't have a sibling to help out. I'm her sole caregiver with my husband's help when he can since he works. For the past five years she has lived in an ALF and now is in a new facility in their memory care unit. However, I did oversee her personally for ten years after my dad died in 2004.
Maybe you could implement what "BarbBrooklyn" suggested - to make a notebook to give her. This could give you a creative outlet in dealing with her. Also, "Geaton777's" ideas to play some soft music and providing some flavored foam sticks would be great ideas. Try to find something that could be helpful for both of you.
Your brother's anger when you don't want to give him a break is understandable. He desperately needs it. It sounds like it may be time to place her in a care facility where they are trained to deal with all the issues both you and your brother are facing with your mom. I think it would benefit all of you.
I know that you feel like you're a terrible person and have come to a place where you dislike yourself. This is not good and in the end won't serve any useful purpose. You may need to talk with someone regarding these strong feelings.
You will be in my thoughts and prayers - that God would grant you the ability to be with your mom in spite of the many barriers that are keeping you from spending time with her.
"You are my hiding place, You always fill my heart with songs of deliverance whenever I am afraid - I will trust in You." Song based on the verse Psalm 32:7
As far as coping with the brutal realities of (some) end-of-life passings...I gently encourage you to be brave and move towards it. This is a maturing opportunity for you, and there are lessons to be learned and applied, unpleasant as they seem now. If it were you in that bed grimacing and moaning, wouldn't you welcome and cherish the company of your family who were willing to just sit there with you? I used to dread (and avoid) those who had lost loved ones because I felt I couldn't "solve" their problem or make them feel better. I was terrified of saying and doing the wrong thing and somehow making things worse for them. I felt guilty that they had a tragedy and I didn't. But out of necessity I eventually figured out comforting things to say and now if I'm stuck, I don't say anything at all, just hug them. If you go to be with your mom, do so with some ideas of what to say and do. No one will judge you, least of all your mom. Your brother needs a break and your help will bless him mightily. Just go and be yourself, bring a speaker and play some of her favorite music softly, maybe put out some essential oil fragrance of something she would have liked. If her mouth is open she may need those lemon-flavored foam sticks that can be wet and dabbed on her tongue so she gets some hydration. Hold her hand, rub her arm gently and briefly. There's no wrong answer when you are with her. I think I can say with surety that if you spend time with her while she is passing you will never regret it. In no way am I trying to pressure or shame you into doing it. Just making the case to be brave for her sake. I wish you much courage and peace in your heart as you move through it all.
I ask, because my mom had strokes and watching her work in speech therapy helped both of us. It helped HER get some of her speech skills back and it taught me that pictures were a great way for her to communicate.
Try this. Make a folder or notebook with laminated pictures, maybe drom a magazine or printed off the web. Things she might want to request, like water, coffee, ice cream. I page that says "i love you". One that says "it hurts". Pages with various body parts like legs, arms, head, neck.
Is there any thought among all of you that mom might do better in a care facility? The visiting woukd be easier, I think if you didnt have to do the hands on care.