Just tired.
Comments
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Why do you think you're terrible, Saya? Makes sense that you're tired. Sounds like you're trying to take care of everyone and too many balls in the air to keep them all satisfied (if there is such a thing). Ends up leaving you feeling unsatisfied with all fronts too--jack of all trades, master of none, so to speak?
As all the psychologists will say, the only person you have control of is yourself. Can you prioritize? It does sound like the situation with your sister being your mom's primary caregiver is not sustainable, so maybe your sister is right: placement for your mom may be the first thing that needs to happen. What will it take to achieve that? Maybe that's the place to start. And yes, your mother may lose your sister's companionship, but she may benefit enormously from being with someone/some place that can more adequately meet her needs. As many have also said on other threads, she may do better with placement sooner rather than later, when she can make friends and adjust.
I think we've discussed on previous posts that dementia can be a known side effect of cancer treatments, so it also makes sense that your sister is having trouble. But my suggestion would be to deal with the finances and other arrangements for your mother first. One thing at a time.
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Saya, I know from your previous posts that this has been a difficult situation for a long time. I don't doubt that you are exhausted, with all you have going on! It seems that, at this point, the current arrangement isn't working for anyone --- certainly not for you, but also not for your mother and sister. Your sister has a lot of issues of her own, and may be complaining so much because she is in over her head. And she probably isn't capable of giving your mother the care and attention she deserves. It's time to make another plan here. Is there some reason you are opposed to placement for your mother? Many posters here have had to confront the reality that they can't care for their LO through to end of life. She may actually do better in a facility, away from the stress of living with your sister. I agree with the above poster that working on placement is task #1. After that is accomplished, you can help your sister apply for disabled housing and find another place to live. But the current plan isn't fair to any of you, or your husband and family --- it is time for a change.0
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Yes, one thing at a time, and it’s time. Arrange placement for your mom. Get that settled along with financial changes for her if needed. Once you have her settled, then tell your sister how long she gets the rent free arrangement( 30, 60, 90 days etc). Maybe placing your mom will give you ideas for how to get your sisters finances in order. Especially if she is developing dementia.
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M1,
I suppose I think I am terrible because I don't step up and take mom 100% of the time. Besides not wanting to, it would probably damage my marriage - hubby is done with all the drama. Not the disease, but the drama around it. Also, since his heart attack our mortality as humans is now on his mind. He wants to get out and enjoy what life he has left.
Besides that he was is an only child, and sees this all as so simple. When his parent's needs became so much that they needed extra care they moved into a facility. They were not rich, but owned a piece of land that would have covered the private care costs for many years. Both his parents were willing, and adjusted to their new home.
On the other hand, my mother has always said that we are NEVER to place her into a home. EVER. She has almost no savings and lives on SS only. There lays the source for much of the guilt! Interestingly, I do not believe she would have done for her own mother what she has asked of us. And, when my uncle had alzheimers, it was my mother that told my aunt that she needed to put him in a facility (again, they had enough funding to do private placement).
Love my mother, she had a terrible childhood and was a remarkable parent considering. Still, she had dark periods and moods, maybe because of her terrible child hood. Several years before my dad passed, he ask me (thru a cousin) if I would promise to take care of my mother after he was gone. I told her no, because I am not an only child. I have four other (living) sibling and taking care of an elder parent should never be one child's responsibility. My cousin said, just make the promise, it will make your father feel better. I again said no, because if I made that promise, I would have to live with it. At the time I knew I would help if needed, but did not want it all - which is what I knew would happen if I made that promise. Several years later, my sister was there when my father was dying, he ask her while on his deathbed to make that same promise, so she agreed. Honestly, I doubt I could have said no at that point either.
After my father passed, my sister moved in with my mom, they travelled together, went to bingo or the casinos almost daily. All was fun and games - even though neither saved any rainy day money. Sis now says mom spent all her money during that time, says she didn't want to travel and do all that they did on the small savings that she had at the time (at this point she has no savings). So even when times were better for them, I heard complaining. From both - their personalities have always clashed. Again, yes they do love each other, but they have a lot of water under their shared bridge.
Love my sister too. In fairness to my sister, she is getting older too. My mom was only 13 when she had my sister. So not much difference in age. I am sure that contributes to their conflicts. Sis has a very 'set in her ways' attitudes - do her wrong and you are gone! Sis and her only child had a relationship similar to my sister's and my mothers. However, the difference is that about 15 years ago Sis and her daughter had a major fight and have not talked since! Sis has 7 grandchildren, three of whom she has never met. Do Sis wrong, and she can totally banish you from her life! I think the only reason Sis is still here is because, at her age and with her financial situation, she has no where else to go. So, if Sis does have dementia (which I think she does), she has no children to help her. And, like my mother, she has already declared that she will NEVER go to a facility. Interesting that she still feels that way after living with my mom! I've already told my children, put me in a facility if caring for me ever becomes a hard ship. Still, as I see it, Sis will be my next responsibility. When I talk to her about making her decisions for later in life now, she refuses. Says if she is too much for me to take care of, just leave her alone to die by herself. More guilt.
So long response to the first sentence of your posting - but it might help with your understanding my guilt.
BTW... I realize that 24/7 is a lot too. In no way am I trying to minimize sis's contribution. But I just can't take on more.
Can I prioritize? The grandkids are both in college in the fall. The older is very mature, and he watches out for his younger brother. We help them with covering a lot of the expenses that are hard for college students to cover (transportation, food, insurance), and since the college they are attending is local, they can live at our place (free rent). Older one has enough scholarships to cover tuition, younger one will have much of his covered. So that responsibility will be greatly lessened by fall.
As I see it next is my hubby. Problem is that sis keeps pushing more and more on me - including guilt. I am classic co-dependent! As I child I was the one that got into trouble if I didn't stop other sibling from not doing what they should have. I guess with as many kids as my mom had, if you have one that minds easily, they become the easy one to make responsible. (Hence why I was the one that was originally asked to make the promise to take care of mom - however, at the time I was attending a support group for co-dependency - so I was emotionally strong enough to stand my ground and say no, I will help but not take on that responsibility alone.)
As for placement of my mom - that will be a BATTLE ROYALE! Mom is still aware enough that she will not go willingly. Again, I don't want to do that battle alone - yet, all my sibling seem to want me to be the one to do that - including my sister that made the promise. My mother has little savings, so that means a medicaid facility. She has some savings (due to covid limiting their trips to the casinos). So she could cover a few months on her own, but would need to be funded after that - that would also mean she would get only $60 a month for personal spending. Since all would be provided, that would work out - but again I'm not sure if she is far enough into the disease to accept the change.
Mom was in the hospital about 10 months back, she gave the hospital so much trouble that they bent every Covid rule they had, and ask if me or my sister could come stay with her during her hospitalization. Sis refused to go (although she now tells me my mom that they wouldn't let her come), so I went. There was blood splattered on her walls because she had pulled her IV out, told them she was going home. They had to place a 'sitter' in her room to keep her from going berserk. When I first got there, she was glad to see me, but later gave me a look of hatred, saying that if I had anything to do with her being in the hospital I'd be sorry! (She had an issue with internal bleeding, they needed to better regulate her blood thinners.) As I said, battle royale is upcoming when it comes time for a care facility. My fear is that, she'll give the facility so much trouble that they refuse to keep her - then what???!!!
However, you are 100% correct that caring for mom maybe more that sis can (or wants to) handle. As I said I prepare all mom's meds and put them in packets marked AM/PM - all my sister has to do is give them to her at 9 am and 9 pm. My mom now sleeps later, some days until 2 or 3 in the afternoon. My sister claims to wake her up to take her meds, but when I pick up the old packets to replace them with the new batch, about 25-33% of the time mom is not getting her meds. I sat an alarm on my sister's phone, but she turned it off. Said it was annoying. Other than being her 24/7 companion, sis does little else - they drink Ensure for breakfast and lunch (which I pick up for them, because neither of them has been to the store since covid began), they go out to eat dinner every night (at the same restaurant), so no cooking. I sat up Meals-on-Wheels - sis complained that the food was terrible! I said then I'll call and cancel your portion, but mom told me she liked them. Sis continued to complain about how disgusting they were anyway. She complained so much that mom changed her mind and said she didn't want them either! Strangely, all that were delivered were eaten!
I'm frustrated because I didn't make the promise to take on ALL of my mother's care, nor any of my sister's - but more and more they are becoming my 100% responsibility! Which is so much more than I can handle with all my other responsibilities.
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Cynbar,
I am sure that you are all right that placement is the next step. I am just not sure that I can do that alone. But I'm guessing that I'll have to!
Thanks for your reply and support.
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Quilting Brings Calm,
I've already told Sis that she can live there free, but that she will need to pay the utilities and similar expenses. Every time she complains about wanting to place mom NOW, I asked her if she is truly ready for that emotionally? She will be alone. Mom may have dementia, but she is still enough of a companion that they can watch a TV show and enjoy it together. Sis knows no one here (since she moved across country when she moved here). All she wants to do is go to bingo or the casinos - not much of a life in my opinion. But she loves gambling, so maybe that would be enough for her.
I also ask her if she is ready to take on the financial responsibilities that my mom covers (electric, water, phone, cable TV). Honestly that usually makes her soften to the placement idea.
That said, I'm beginning to question whether my mother is getting the care she needs. Not because my sister doesn't want to, but because mom's needs are increasing to the point that Sis maybe can't do what is needed.
I know I sound like I am all over the place with these issues. But there is no direct path for dealing with so many different issues!!
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Saya, I don't read where anyone is asking you to move your mother into your house. You are thinking of that because your mother doesn't want to go to a facility, and your sister isn't willing to be a 24/7 caregiver any more. My advice is that you do not give any more thought to moving any more people into your house. No mama, no sis, no more grandkids.
Placement is not abandonment, unless you drop them at the doorstep and are never heard from again. I went to visit my adult son at his RCF yesterday afternoon. While we were sitting on the veranda telling stories, a car rolled up and two women got out. The younger woman helped the older woman load some purchases onto a cart provided by an employee, hugged her, told her she loved her, and drove away. They had had a nice outing, and no one was being driven insane by the isolation of living like Crusoe and Friday.
You will still honor your father's wish that your mother be cared for if you place her. I see that my wife and son are cared for, but I don't personally do it. I don't do their dentistry, either.
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Saya, you have a lot happening in your life right now and clearly you want to do right by everyone. I'm sorry if this sounds harsh, but things are only going to improve once you accept that you are not responsible for everyone and everything. You are doing way more than you need to, and then being frustrated by it. Place your mum, let your sister figure out her own way of entertaining herself, and providing for herself. If she does exhibit more signs of dementia, come up with a plan for her care. Whether that be a carer at home, or placement. You certainly don't need to be cleaning for her. Many people have bad backs and find a way round.
It's great that you enjoy having your grandsons - they can do the yardwork.
If you're thinking "but I can't let them down", or something like that, think what a pickle you'd be leaving them in if a health issue were to hit you. You're not doing them any long-term favors.
Tough love, I know, but the ball is in your court to address many of these issues.
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I think feelings of guilt are a big part of being a caregiver, although I think those feelings are not deserved. This is the third time around for me (my late wife of 20 years due to chronic illnesses, my mother with age, and now my much younger BIL with EO), and it's always there. I learned to manage it and to some extent ignore it, but it's there today. The facility I'm taking my BIL to is getting noticeably impatient with me because random obstacles in the city he lives in (a canceled moving van, getting his house and car ready for sale, dealing with financial issues with his bank) has kept us from getting him in the room on the schedule we wanted, and as much as I just want to wave it off as "things I cannot change," I still feel guilty and inadequate every time I discuss moving schedule with them.
It's already been said, but I think maybe getting some help in convincing your mother that she needs to be at a facility would be something to check out. With my BIL I doubt he ever would have agreed to go into the memory care he'll be in if it had just been my wife and I trying to convince him. But a social worker and then a memory care nurse via zoom seemed to do the trick.
I'm not trying to give easy answers because there aren't any, or claim any particular expertise (I learn much more here than the worth of any advice I could give). But the way you describe it doesn't sound sustainable for much longer.
The dilemma I had was "What will I do if he just refuses? I can't go back to my city and just let him deteriorate, but I can't stay up here forever either." In our case it worked out, but we had to get some outside help in convincing him.
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Saya_G,
Keep your eye on the prize. If your husband is being supportive through this and wants you two to travel and see the world soon, don't let that slip by. Get everything in order as others have mentioned and reward yourself and hubby. Btw, loved your BATTLE ROYALE comment... Mine may be more like a cage match!
Pie
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I implore all caregivers to reconsider thinking you have guilt. Guilt is a feeling of having done something wrong. Most of you are doing as much as you can, if not more. I submit that what you are feeling is more like despair or frustration and plain old exhaustion. If someone has done something wrong, he or she should feel guilty. But I think you caregivers should feel a degree of pride in stepping up to a most difficult challenge. Pat yourselves on the back! You already know that most people cringe and run away from caregiving a PWD. JMO.
Iris
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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