Follow
Share

I think when mom has advanced dementia it's only fair that the children all help to care for her.


Right now my youngest sister is the primary caregiver. She lives with mom in a house rented by her and my older brother, who has a mental illness so is drawing military pension. Due to his mental disability he's pretty much useless as far as caregiving. But he agreed to use a sizable portion of his disability pay to help financially with rent, food, etc.


My younger sister is divorced and single with no social life, due to her care of mom. She works during the week and my mom goes to daycare during the week.


I'm married with 3 grown children and 4 grandchildren. I help out my younger sister by taking mom during the weekends and many times during the week when mom "acts up". Which is getting more and more frequent lately.


My other two siblings, a younger brother and older sister, do not help much. They only come around when my sister and I desperately need help. My older sister is married and both her and husband are retired. Their kids are all on their own. My older sister and my mom never got along well, so that doesn't help in the situation much. My younger brother is divorced and has a girlfriend he tries to keep secret about but we found out. He has 2 kids, one is an adult and the other in high school. Even his kids did not know about his girlfriend until recently.


My younger brother is the one with "all the excuses". He'll only help if we plead in desperation. Then he'll help. Maybe for one day if any. Most times he'll spend a few hours then leave.


My older sister will last maybe one day before my mother doesn't want to stay with her. She tries but her and my mom just don't click. And it's worse now because of moms advanced dementia. My older sister also has to undergo dialysis three times a week.


I want to ask my older sister and younger brother to take my mom for the weekend once a month each. If they do that, and I take my turn for a weekend, then essentially my younger sister, the primary caregiver will only have my mom for one weekend a month besides daily care during the week. I think this will be a huge relief for her and enables her to at least have a bit of a social life and enjoy time for herself and her friends.


Would anyone care to share feedback as to how to tactfully get this proposal presented to my siblings? I'm prepared for the BS my younger brother will try to pull and my older sister just gotta try harder to deal with my mom in her advanced state of dementia.


Just looking for ideas and to vent a bit actually. Thank you.

Thinking about immediate respite support for your sister, have you tried this link?

https://www.elderlyaffairs.com/site/371/DesktopDefault.aspx?tabid=371

As you're working with a social worker I'm sure you do already know your way around local services, but thought it might be worth checking you'd specifically asked about caregiver support.

PS If the link doesn't work let me know and I'll cut and paste the relevant details.
Helpful Answer (1)
Reply to Countrymouse
Report
Electroguy563 Jun 17, 2019
Thank you for this information. It will help me a lot. May you be blessed for sharing what you know so my family can move on in hopes of proper care for our mom.
(1)
Report
See 1 more reply
I see exactly where you are coming from,I too am a caregiver and I have begged other family members to help but it gets me know where,I get cussed,yelled at and every excuse under the sun..So I just gave up asking..I am at my whits end on where to go from here,I never get time to myself,it is like my whole world revolves around the care of my father in law and his son who lives with him,his son is also not competent as his IQ is less then 60 % and the father in law has dementia,incontinence,high blood pressure,depression,anxiety and the son that lives with him although has a low IQ I have seen him feed his dad but he won't do it half the time and my father in law has already been hospitalized for malnutrition,that is when I had to step in because noone else would..I do everything from taking them grocery shopping,filling their medications,taking them to the drs and hospital as needed,making sure they both bath and take their medications,and now since my father in law has dementia he swears he can't swallow so he is now on an all liquid diet meaning we have to mix up enough to make sure he gets the recommended calories..my son does help with the feedings but everything else is on me..I want to have a good heart and before all of this I did but this has really changed me,I feel trapped with no way out,and even though I love my husband if I had a way out I would gladly take it
Helpful Answer (0)
Reply to mrswornout1974
Report
Electroguy563 Jun 17, 2019
Thank you for sharing your story. I sincerely hope that you will find help, support and relief from your care giving efforts, just as I and my sister hope for the same.

I know that just by hearing these stories, I can find comfort that there are others like you and me struggling under the same circumstances. Just know that I and others are thinking about you.
(1)
Report
I have read your update & agree you are in a very hard situation. It should not be all on any one of you.

Basically as at today the primary carer (younger sis) cannot do the job (ankle injury) & as no other sibs can or will do it - doesn't that qualify for some sort of emergency respite?

Is there a hotline.. or Doctor you can call today? I am not US but I would call Lifeline where I live & get Mum taken into emergency care today. If Sis had broken her leg (not twisted her ankle) what would the plan be?
Helpful Answer (0)
Reply to Beatty
Report

To all who responded to my post, thank you. Yes, I agree it's quite hard to explain the situation my siblings and I are in with my advanced dementia mom.

My primary care younger sister is tired. Burned out. And I failed to mention, is also sick. She has severe kidney disease. I want to help her.

We had a geriatric psychiatrist scheduled for my mom this past week. The doctors office called and rescheduled for July 5th due to over-booking. We are desperately trying to get my mom placed in a care home. All of my siblings do not have the financial ability to help me place her in a care home. I offered to pay half of the cost if they could only help pay the other half together. They claim they cannot. My wife is concerned that even if I do pay half the cost of care home that it would devastate all the savings she and I worked so hard our whole lives to earn. We argued about the fact that if we do this there will not be a penny for her and me if we ever come the same way as my mom.

My mom qualifies for Medicaid because she has almost zero assets, way below the minimums to apply for Medicaid. Certain care homes will accept Medicaid but for us to place mom we need a doctor directive and social worker recommendation. We are working on this. Meanwhile my sister is at the end of the rope. She performed remarkably these past years and I just wanted the rest of us to share a larger part of the burden.

I will go on the record to say that I will not jeopardize my marriage in this endeavor. My wife is trying hard but she is human. My mom can't help herself when she says hurtful, untruthful, and horrible things to her. And about all of us for that matter. Dementia is a cruel and terrible thing.

And yes, my older sister is struggling with demons of her own. Maybe I was a bit harsh on my expectations of her.

I was just trying to have everyone help with the burden until we can place mom in a care home. We have a long way to go, so that's why I was concerned for my younger sister.

I just had my mom this weekend. She was very difficult. I plan to take off work this week to continue watching her. My poor younger sister twisted her ankle and now it is severely swollen and she can't walk very well. I've watched my sister closely lately and she is losing it. I just don't think it is a good idea to leave my mom with her right now.

We will get through this. It will be a long journey but we will prevail. This is just a vent and you all don't realize how all of your feedback is really helping me. It is helping me cope tremendously.

Thank you so much.
Helpful Answer (1)
Reply to Electroguy563
Report
Countrymouse Jun 17, 2019
Hugs to all of you, but especially you for thinking so fully of others. Please keep venting! Would it help your sister to join us, or at least to know that we're sending our best vibes to her?
(2)
Report
”I help out my younger sister by taking mom during the weekends and many times during the week when mom "acts up".”

“ If they do that, and I take my turn for a weekend, then essentially my younger sister, the primary caregiver will only have my mom for one weekend a month besides daily care during the week.”

Again, I’ll ask - what’s the actual circumstances regarding your mothers care? Something is off here and/or it’s not the whole story.

Regardless - whatever the actual situation - moving mom around from house to house is not the answer.

A care facility where mom can receive round the clock care in a stable environment and with a regular routine is. The answer.
Helpful Answer (4)
Reply to Rainmom
Report

I posted and then realised everyone had already said that :/

One further question, after some reflection: is it your younger sister who has been the main force opposed to placing your mother in care? And you've been happy to support her but are fed up with being the only one who does?
Helpful Answer (2)
Reply to Countrymouse
Report

Eg563, first of all I would like to thank you so much for providing such a helpful, clear description of quite a complicated family; and also I admire how you've thought through the needs vs wants.

Your view is a combined one. You combine the principle that children owe some kind of duty of care to their parents, with the (usually correct) notion that "many hands make light work." So that, put together, if everyone in the family contributed to the best of their individual ability, this would all be perfectly manageable.

Ah, but. What if one or more members do not feel the same about the duty of care they owe to their mother? What if, for example, they feel that your mother was responsible for planning and arranging her own care in later life, and if she hasn't done so it isn't their fault?

Even if you are dissatisfied with such a view and look on it as selfish and unkind, there are many other reasons why structuring your mother's care around the contributions of family members is risky and unsatisfactory.

The older sister is on dialysis: well, nobody's just on dialysis; she must also, then, have chronic kidney disease, which further implies that much of the time she will be feeling exhausted and unwell. She and her mother are not a happy combination at the best of times. To expect her to "try harder" to cope with your mother on her one-in-three weekends is just not reasonable.

Your younger sister, bless her, seems to have her act together and is playing a blinder, as we say this side of the Atlantic; but what if she loses her job and needs to find another, falls ill, meets a serious romantic prospect, or encounters any of the other major life events that might claim her attention? Too much is resting on her shoulders for safety, or for fairness to her, as you recognise. Plus: what is your mentally ill brother's back-up support system?

Younger brother: you're entitled to have your opinion of how he's managing his life and his relationships, you're even entitled to give him a piece of your mind if you like. But how does that make it a good idea to leave your mother in his care for 48 hours at a time?

I give you unreserved credit for your intention to provide good, loving care for your mother and to address the disproportionate burden that's so far fallen on your younger sister. In my opinion, though, the sharing among family is not the answer. I would strongly recommend that, with an open mind, you research memory care or dementia care facilities within striking distance of the family and rethink the options.
Helpful Answer (6)
Reply to Countrymouse
Report

My heart goes out to your younger sister who works, while living with Mom with dementia and older mentally ill brother. I can see why you want to help her. However shuffling Mom around to siblings who don’t want her doesn’t sound like the best option. People with dementia do best with a stable, consistent routine. Change to a routine or unfamiliar surroundings causes them even more confusion. This is why some people find that even short visits away from a nursing home has very bad after effects. She’s already back and forth to day care, and to your house on the weekends. This is a lot of activity for a person with dementia. So aside from the issue that your siblings aren’t able to help due to health, or just plain don’t want to, it might not be be the best idea for Mom. So how to help your sister without more disruption for Mom? How about paid caregivers on the weekends? Would your other sister/brother/you be willing to pay for that to help your sister? Since you’re retired and empty nesters evidently you and your wife have decided that Mom shouldn’t live with you for a while to give your working sister a break? Then as Barb has already suggested, I would start looking for a place to help Mom 24/7. Her condition is not going to improve and in many cases this is the best option for everyone.
Helpful Answer (5)
Reply to rocketjcat
Report
Beatty Jun 16, 2019
You said "People with dementia do best with a stable, consistent routine" - you are so right. You explained beautifully.

I had started picturing the confusion & stress on Mum being moved around the different sibs homes. Especially if Mum is mobile, trying to find the bathrooms, worse at night. The increaseed risk of falls, even possibilty for wandering out the door needing to "find home".

Finding Mum a nice room in MC she can get used to & be her home with her things would be my aim.
(5)
Report
One day Barb I will disagree with you, but don't think I have so far...

Sorry Electroguy I am another with same.

I have been both sides of this: wanting youngest sister to step up more - nope - she set her boundaries & I had to accept them :) She does friendly visiting - no hands-on.

Also currently getting avalanche pressure from my Dad to basicially be at beck & call for my disabled mid sister. Also nope. Him not with that programme yet.

Dementia is hard. Advanced dementia gets harder. UTIs, chest infections, falls. You sound dedicated & want to the the best for Mum.

The best can still be in a facility. You can be the best visitor. The stress goes down. People all get some of their own life to live. Consider it.
Helpful Answer (2)
Reply to Beatty
Report

I don’t know a way around asking this without sounding like a b!tch - so I’m just going to say it and tell you that isn’t my intention - to be critical of you but I don’t get it... what am I missing?

If your sister has your mother during the week and YOU take your mother on the weekends - how does your other siblings assuming a weekend each - help your sister?

And for WIW - your sister with 3 X weekly dialysis... Seriously? Don't you think she’s got enough to do just taking care of herself? Well, never mind. Seems you don’t or you wouldn’t have poised it as a plan. I say, give your older sister and her kidneys a break. Her life is hard enough.
Helpful Answer (4)
Reply to Rainmom
Report

Electroguy; I'm going to apologize in advance for disagreeing with you, but let me explain that I do so with some experience of this sort of situation.

My grandmother ( no dementia, just typical passive aggressive, entitled old lady stuff) moved in with us when her physical abilities went down hill and her neighborhood was no longer safe. The plan had been for my mom and sister to rotate their mm back and forth every two weeks. ( botheres were off the hook; one lived far away and was was an alcoholic widower).

This "worked " for a little while until my aunt fell I'll with significant heart disease. Grandma stayed with us full time. I had a brother with osteomyelitis ( kept him hospitalized at a distance for months at a time; I had a younger brother I became responsible for after school every day.

Grandma was unhappy and lonely. Mom was stressed by grandma's comments about everything. We were all stressed by the lack of privacy. I dont have " fond memories" of those years and neither do my brothers.

Fadt forward to a few years ago. My mom could no longer live in her home ( terrible anxiety, which actually turned out to have as its etiology Mild Cog Decline. Mom thrived in Independent Living for 2 years. Then she had a stroke. Developed Vascular Dementia. And fell, breaking her hip. We placed her in a nursing home, where she lived pretty happily for the next 4.5 years. She had nurses who were alert to her physical state ( they successfully treated pneumonia and UTIs several times. They knew when 912 was necessary. There was a geriatric psych on staff who adjusted meds to keep agitation at bay. A podiatrist, dentist, audiologist, and dermatologist who came in. A wound care specialist. A hairdresser on site.

It took a village of professionals to get mom through the last years. She was HAPPY. She had companionship. We were all able to visit her, love her, advocate for her and fuss over her. It was stressful enough, doing this with professionals as the main caregivers. In your siblings shoes, zI would not step in to help either, because I dont think keeping elders with dementia " home" is a good idea. Shifting them from sibling to sibling is even worse I think.

Has placement for your mom been considered? Are her behaviors being managed with medications?

I'm sorry if this is not the opinion you want to hear. (((((Hugs))))))))
Helpful Answer (7)
Reply to BarbBrooklyn
Report
Electroguy563 Jun 17, 2019
I have never thought about the moving around of my mom among my siblings would actually make it worse for her. I still have a lot to learn about advanced dementia and what you and the other members have said makes sense.

I really believe my siblings and I need to have a sit down drag out talk as to what to do to better care for our mom.

I thank you and the other members for bringing this up about dementia sufferers needing regularity in their life. Maybe right now it might be hard because of the current circumstances I'm in but I will now make this important aspect of my mom's remaining time with us the primary goal.

Again, thank you so much.
(1)
Report

Ask a Question

Subscribe to
Our Newsletter