Hello all. Sorry in advance for the long post. I’m new to all this.
I’ve been caring for my 84 year old mother for a few years. She still lives at home but has had a slow cognitive decline over the past few years. When assessed by her doctor she initially tested in the lower end of normal and I believe her latest testing was only 2 points below her last one. Recently in the past week my sibling has become concerned as my mom is more forgetful about conversations and repetition. I have noticed it too but it’s not anymore than usual. I do plan on getting her evaluated again and spending some more time with her to assess her safety and needs.
For background, my mom lives at her own home, she is still capable of bathing herself, cooking for herself and light housework. She has a hernia which she doesn’t want to get surgery for right now (we’ve been trying to encourage her and doctors says she’s okay to not have surgery right now) so we do her more strenuous chores like vacuuming, washing floors and lawn maintenance. She is aware she forgets things and she uses lists and writes a lot of things down. She’s very aware of what she’s doing when she’s cooking and sets timers for herself when cooking. We have not noticed or seen any problems with that. We check in with her often, daily with telephone calls (I speak to her a few times a day), weekly visits or have her over to our homes.
I deal with all paperwork, bills, groceries, daily concerns she has, precooked meals several times a month and I visit weekly or have her at my home. Someone is visiting her at least once a week and usually more than that. My sibling travels for work and has adult children that no longer live with them and they don’t live in the city either. My sibling has grandchildren and is involved with them a few times a month. They say they are too busy as they work full time, have kids and grandkids and I don’t have either of those so I need to do more.
Recently I did not visit with my mom for 10 days due to me taking a break. I have a chronic illness and have not had any kind of holiday or vacation since January 2020. I also currently do not work as I’ve been unable to due to my illness. That was my choice to not vacation anywhere. I have been the primary caregiver for my mom since 2020. My husband and I do all the things listed above plus any home maintenance she needs. My sibling does doctor’s appointments and outings that require my mother to be driven. These outings possibly happen once a month or once every two months, the rare occasion, twice a month. They do visits when they can and help with some of the household chores, it’s maybe a 70/30 split (70 being me, 30 being sibling).
Recently I was accused of not doing enough because I did not visit with my mother for 10 days. I am unsure of how to handle this as when I said I was taking a break and am dealing with some stuff, I was accused of being selfish and my sibling asked when they get a break (they have been on at least 4 vacations in the past 2 years and as I said travels for work and does not call, check in or deal with me or my mother when they are away).
So my question to you all, am I doing enough? Should I be doing more for my mother? Any advice on how to deal with siblings that are like this? I feel like I’m doing a lot and my mother and others say I do a lot but then my sibling accuses me of not doing enough. I thought other caregivers may have some insight.
To add, I am in the process of contacting outside help and booking g an assessment for her to see if she is still safe and able to live alone. If she is not able to live alone or needs to be immediately removed from her home, then have a room available for my mother in my home. She just isn’t ready and no one that I have spoken with thinks she is at that stage yet.
Thank you for your time and advice in advance.
Now that doesn't mean that she should move in with you, as with your health issues her care will get to be too much for you. Instead I would start looking at different assisted living facilities with a memory unit attached, as she will eventually need memory care.
You say that your mother isn't ready yet to move anywhere, but you must know that all it takes is one episode where she forgets to turn off her stove, or she falls and can't get up and lies there for days.
So until you work out the details for her future care, I will recommend at least putting some inexpensive security cameras in her house. That way you and other family members can check in on her to make sure she's ok.
I use the Blink cameras and would recommend them.
And to answer your question as to if you're doing enough for your mother, I would say that with everything you have on your plate that yes you're doing enough.
Although I do hope you realize that your mother is NOT your responsibility, but your husband, children and marriage and of course yourself and your health are your responsibilities.
And I will end with saying again, please DO NOT have your mother move in with you and your husband. It will be way too stressful for you and your health will suffer. Plus she will only continue to get worse and her care too much for you to handle, so best to get her into a continuum care facility now, where she has time to adjust and get used to her new home and environment, and where you can just be her loving daughter and advocate and not her burned out unhealthy caregiver.
Thank you for your advice on her not living with us. Both my husband and I agree that long term we will not be doing that. We will do it for short period of time if it’s an emergent situation. Your points are so validating to me because this is the concerns I have brought up but my sibling ignores it and believes that since I do not work I’m capable of doing it. At first I said fine but I have now made it clear that we will only do this in an emergent situation for a short period until we find her a place in assisted living.
We are planning on getting her in an assisted living facility. We are just working through the system in Canada to get that going. As she still is competent we have to have her in agreement and she’s almost ready. I think she wanted one more summer of gardening lol. I think once we have some discussions in the coming days/weeks she’ll agree to start the process. I will look into these cameras as well. She just got internet a couple months ago with her new TV so I think this is something we may do.
Thank you for the reminder re responsibility. I wish my sibling understood that. They say since I don’t have kids or work that I have lots of time. They don’t really understand what my illness is like and just say things like I’m sorry you’re dealing with that and that’s too bad. They still think I should do all the things even when I’m unwell. It’s such a sh*t show for lack of a better way to say it.
Thank you again for your kind words and response.
Realistically, with what you told us about your mother, I think that as long as you are nearby this is doable
BUT
And this is a huge but....................
Your mother must now be checked on minimally at least twice a day; phone is fine.
You can set up a camera system you monitor if you prefer.
Your mother needs to have an alarm, a cell phone with holster or something with which to get help in case of a fall or other mishap that is WORN on her body at all times.
Your mother needs to be SEEN minimally by one of you every five days or so, along with the phone checks daily and possible cameras.
None of this is rocket science.
You know yourself that it is not OK to not see your mother nor for anyone else to check on her for a 10 day period I think unless she can operate a zoom computer call or an iphone check in by camera.
Best to you. Your sibling is doing what she feels she can do.
You are doing what you feel you can do.
As long as you BOTH agree mom is safe as she can be in the circumstances my vote goes to her being able to remain in her home as long as possible.
When you cannot support it sufficiently or believe she could be in danger then placement is required.
Good luck. I hope she is lucky enough to be able to pass in her own home. But lack of being able to reach her for more than 12 hours now is a no-no, I think.
your mother needs
I do check on my mother by phone in the morning, at lunch, at dinner and at bedtime. Sometimes just quick conversations of 5 mins but mostly longer 15 minute or more conversations. If she does not answer or call back within a half hour to an hour I go check on her or have someone else check in. We’ve only had that happen once and my mother was outside planting and didn’t bring the phone out with her.
In that 10 day period that I did not go over my sibling saw her three times. I talked to her the usual times I stayed above. She is always checked on in person every 4-5 days.
I will look into cameras and alarm for her. I have been trying to get her to agree to an alarm for years but she’s stubborn. Recently I had someone give me a helpful way to encourage her to get one and I plan to discuss it with her next visit.
What I do want to say is family issues when your caring for a parent family issues really pop up . Sometimes they break the family so hard, they never come back.
As for me brother is POA I'm not, I'm wondering if you included you family in your desions. If you told your family about your vacation. You absolutely deserve a vacation no question there. But I think it would be easier for me if my brother would have much better communication with me.
Include you family in getting outside help. Help them , help you.ake sure they feel a part of things and not left out
All of that I'm not getting from my brother. I'm not saying you don't . Because I have no clue, I'm just saying where my resentment lie towards my brother.
Good luck this is a horrible hard road we are on
I do include my sibling in all decisions and all things related to my mother. We make decisions together. Getting outside help is currently being discussed.
I have expressed the need for a vacation but they have told me well than that means I have to use my vacation time to stay home and care for mom. But that’s not the reason why I haven’t taken a trip anywhere. That’s why I took this time while my husband was away and my sibling wasn’t working away as much to take a little time for myself. I was still in daily communication with my mother though and ordered her groceries for her.
I agree on the communication, I communicate with my sibling but they don’t communicate with me, they have set up boundaries that I am only to text when I need to talk to them about my mother and they will decide when they have time to discuss it with me. It’s very frustrating situation and a toxic relationship. I am the younger sibling.
Don’t worry what other’s think , it’s a common problem of finger pointing in families. Sounds like the bases have been covered so far , but Mom now needs 24/7 supervision .
The real question is “ What does Mom need ? And how to meet that ?”
You have health issues and a husband and some sibling friction.
The current situation is too much for you now . This usually gets to be too much for one person . Tour facilities and get Mom placed . It’s time .
it sounds like you are doing a lot to me. More than I would hope my adult child ever does for me.
Perhaps a reframe of the question would help. The categories are:
1. what your mother needs
2. what you are able and voluntarily willing to do without damaging your own health and happiness (and breaks are definitely required for health and happiness!)
3. what your (bossy sounding) older sibling is able and willing to do without damaging his/her health and happiness.
I would say if you agree your mother needs phone calls X times per day and in-person visits Y times per week, then look at what you and sibling can do to meet that requirement. If there is a gap, work together to find out how to bridge it. Perhaps there is a volunteer from a church group or neighbor or other relative who can call mom to bridge the gap. Perhaps cameras will make the difference. Maybe she can go to a senior center one day a week. Maybe you can hire a companion for two days per week.
Same thing when either of you need a break from whatever commitments you voluntarily agree to. Say in advance “I can’t visit her on Thursday the 27th as I normally would. Let’s brainstorm a Plan B” — just like you would if older sibling says “something has come up and I won’t be able to take her to her dr’s appointment next Wednesday. Should we reschedule it or is there a neighbor who can do it?”
Try to recast it as not sibling rivalry or who is “doing enough” or whose life is more busy or whose other priorities are more important. Focus on what needs to be done and the best way to accomplish that. Including outside help beyond you and your sibling. Try to think of it like a work problem?
Your mom almost certainly will get worse over time. So the amount of assistance she needs will continue to grow. The assisted living idea is very good. I hope she is cooperative.
In my situation, I do 99.5% of everything connected to my helping my mom as she lives in my town and my brother lives on the other coast and has never been as close to her. I am grateful when he does visit and help and I keep him updated. I would blow my top if he ever hinted that he thought I was not doing enough. Luckily, he has not. Sometimes he will say, “let me know if you are planning a vacation and I can fly out to keep an eye on mom.” The thing is, when the time comes it’s never convenient for him. So I don’t count on it anymore.
I also have a sibling, that believed he was helpful, but in reality was not.
I think I did what I did for my mom because she needed me. I resented the fact that my sibling was not engaged but realized I could not control his responses. I could only control my reaction and control my mother’s needs. My sibling never suggested that I was doing enough. I think my head would have exploded if he had.
But, my point is, make a plan for the stages your mom will go through. I kept my mom in our family home, 12 hours from me, for as long as I could. (Paid bills, called at least once a day, hired help that watched over her for a few hours a day and helped with cooking and cleaning) etc.
When she declined more, she moved in with me for added care. I moved her to an ALF when my care was not sufficient. She passed in 2022 but that whole caring process was over 15 years with many stages of care plans.
Make a plan you think is sufficient for now but have a plan when her health changes. She will not stay as she is today and the slope of the decline is unpredictable.
From what I can see, I would not count on sibling help. I have always thought if they do not help, they do not get a vote!
Hope for the best but plan for decline. I wish you the best!
Im so sorry for your loss.
I do have some plans in the works and am just trying to navigate it all and get all my information so I can be helpful to my mom.
I am like you that I resent my sibling at times but I know I cannot control what they do. It just hurts me when they tell me I’m not doing enough for taking one weekend off of visiting my mother when my sibling had seen her 3 times in that time period and I kept in contact via phone multiple times a day and got her groceries delivered. It’s tough.
The answer to your question, “Am I doing enough?” My answer to this question is that you are doing too much!
I was my mother’s primary caregiver for many years.
My mother died in 2021. So, I have had lots of time to reflect on my experiences as a caregiver.
Don’t place so much focus on what your siblings should do or not do.
Focus instead on what is best for you. Focus on the end goal that will benefit you and your mom.
You have gone above and beyond, just like I did. Trust me, if I could go back in time and do things differently, I certainly would. Hindsight is 20/20.
I was blind and it took a while for me to figure things out.
None of us go into caregiving knowing everything. We aren’t prepared for dealing with long term caregiving.
Wishing you all the best.
It doesn't seem reasonable that you could do any more and keep your own health and sanity. Is there any way your mom could assume some of the duties that you've taken on? Do you really need to take meals to her?
Please don't take her into your home. When people do that, they find that it's subsequently much harder to move mom to the care facility she needs. Move her directly into managed care if she can't stay in her home. And (having done it for my parents), I can tell you that managing home health care is a miserable situation, and it will exhaust you as much as what you're doing now.
As for sibling, ignore.
Good luck to you and mom.
The Mom is living in assisted living but in her own home .
this way, you know your mom is taken care of, you’ve made it clear to the other sibling your expectations, and you’ve set and end date. You owe that sibling no explanation on what you’re doing and/or why you aren’t available. When they project their guilt onto you about you not being around (because that’s what they’re doing), simply respond - okay, I’m sorry you feel that way. Don’t change your response from that.
Ensuring your mom’s safety, well being and next steps is great work and responsibility for you. Hiring help, or looking for ways for paid help to step in, can help with burn out. Before you hire someone, you can say - I’m looking to hire XYZ (like a house cleaner). Would you like to do this work instead of me hiring someone? No, okay, I’m hiring someone.
more than anything… you are doing more than enough. Be confident with that assurance.
I really question the plan of having a room ready in your own home to care for your mother when she can't be alone. You already are finding caregiving very challenging , which it is. Having your mother in your home 24/7 and her health getting worse, which inevitably it will, will be much worse than what you are experiencing now.
Please look into facilities for her, group homes or such. If your mother doesn't have the finances to pay look into medicaid. You must protect your own health and family life.
Thanks for advice and sharing your experience with your own sibling.
I am going through the navigation of our healthcare system in Canada to start the process of assisted living. My mom has been reluctant but is realizing that that is the next step. We’re working with her to encourage that move. Her living with us would be for an emergent reason until we can get her something permanent.
Negative remarks that are made by others say more about them, than they say about you.
As people say, “Consider the source.”
People who disagree with you will always try to get you to question yourself.
Sure, it’s annoying and can work on your last nerve, if you let it.
Honor your feelings, then toss their comments in the trash where they belong.
As long as you are confident in your choices, that is all that matters.
That should shut their yapper.