How Do You Deal With Moving In w/Family Now?

[tnd]

4 hours ago, KayC said:

I finally brought her home yesterday

KayC:  That is good news. I hope it brings you some relief. 

 

4 hours ago, KayC said:

But I know she wants to be in her home, so I'm hoping she'll agree to call an electrician for her bad wiring and a caregiver/housekeeper. 

KayC:  Let's hope that she does. I think you had said she could afford it so hopefully she will realize that she needs to take care of it. Taking her soup and helping her with her meds and small things is very nice of you but, everything can't fall on your shoulders. I think she's got to be the one to take the initiative. Otherwise, she is only taking advantage of you. And if she can understand that is what she is doing, then she should be able to understand what a POA is. I think it would probably be in your best interest to have POA and while she understands what it is and how it protects her. I wonder if she'd ever consider an assisted living place. They aren't nursing homes altho some of them have nursing care or a nursing home attached. Well, I'm sure you've already done the research. Just sounds like she would only need a little help but more than you are able to give. You have to take care of yourself and your own health. She ought to understand that. Oh, the things we go through! So overwhelming and exhausting just thinking of it all. Thank you so much for your support today...and yesterday...and tomorrow!  

[KayC]

I went over to help her yesterday, and discovered she hadn't balanced her checkbook in months, it was more than $6,400 off and she doesn't know where her old bank statements & check registers are so I could only start with her new bank statement and go from here, she hadn't written any checks in two months (that she remembers) so hopefully have it right now.  I don't see for the life of me how you can be that far off.  Listened to her try to call the phone company, and where you say your birthdate she did a whole lot of talking, which of course the machine didn't understand so had to explain again and again to just say your birthdate month/day/year!    She doesn't get anything.  She didn't have her oxygen on, her living room is full of tanks they delivered the night before.  She did have her meter out, told me it was right on the cusp.  So long as she keeps an eye on it.  Her friend came to get her grocery list and she hadn't made iit out yet, couldn't think, so we helped figure out what she wanted and write it down, bless her heart, she brought the items back and put them away for her while I paid her bills.  I brought her homemade soup and dessert...last night she said she ate the dessert and fruits for dinner (no sugar added) but she's diabetic and needs protein in her.  She lost her address book, last remembers it at Marquis.  I told her to call them if she doesn't find it and I can pick it up (another 100+ mile trip).  I'll have to remind her a couple more times or call them myself.  May have to go down to her house again and search as she had several bags and probably did something with it.  I gave her some numbers she needed.  This is what I'm dealing with.  At least I took Kodie to see her, she was missing him!  She had a crackly bottle I put a treat in it and he had fun trying to get it out. 

I'll have to nag her about the electrician and POA but one thing at a time, she's overwhelmed right now and I think that's adding to her focus/ability to think.

[Gail 8588]

You are a wonderful sister.

[tnd]

7 hours ago, KayC said:

she's overwhelmed right now and I think that's adding to her focus/ability to think.

KayC:  She may need time to adjust to being home. It probably is overwhelming for her. But also, she should probably be using her O2. When your O2 level drops below 90, things can start to get difficult and it's hard to focus. They actually say a level below 93 is too low. For me, I start struggling with things and breathing below 90. Does she have a home oxygen concentrator (like a Devilbiss) that plugs into the wall that runs 24/7?  Her doctor can prescribe one of those and send the Rx to her oxygen supplier. They can be hooked up to 52 foot long oxygen tubing (so a person can walk thruout their house or 30 foot tubing). Sorry to overwhelm you with questions, but I'm on O2 24/7 and can tell you that it is hard to think or even move when my O2 is low.  

[tnd]

My brother will be coming to load up my furniture. I live in an apartment so don't have much. I will be staying in their guest room at the house. They have loads of furniture, including bedroom furniture. I am hoping that they will let me have my own bed set in the room. Especially since it is very likely that I will be living with them a long time. I don't know where they are planning to put my furniture or where they would put the furniture that is already in their guest room. But I do think I want my own bedroom furniture in there. The room and it's ensuite bathroom will be my only personal space. The bed set was some of the first furniture my husband and I bought together. And it's still in great shape. I don't think it will sadden me in fact, I like our stuff and the dresser and chest of drawers can store a lot. I only need a couple drawers for clothes. I would like to keep my framed photos of my husband on the dresser. And perhaps some other personal items. One of my cats like to nap on the dresser. See where I'm going with this? I wonder if it would be putting them out to ask if I can just use my own bed set. Another thing to discuss with them. Hate this.  

[KayC]

18 hours ago, tnd said:

can tell you that it is hard to think or even move when my O2 is low.

Good point.  I found an eye doctor and electrician and will make appts. Tuesday, still need to find a denturist, will be driving her to town a LOT in the upcoming months, can't do it in the winter though as she can't get into my 4WD pickup.  It's small and she's large, so even if I put a stepstool up to it, no.  She'll have to have a friend or better yet, a caregiver than can fill in the gaps.  We have no public transportation here.  Learning she's without hot water made it emergent, I'm going to check it out today as she refused to run the water for a timed period so I could be convinced.  Sigh.

15 hours ago, tnd said:

I don't know where they are planning to put my furniture or where they would put the furniture that is already in their guest room.

Have you asked him if he has a storage place for the excess?  I would absolutely want my own bed!

[tnd]

6 hours ago, KayC said:

I found an eye doctor and electrician and will make appts. Tuesday, still need to find a denturist, will be driving her to town a LOT in the upcoming months, can't do it in the winter though as she can't get into my 4WD pickup.

KayC:  You are so good to your sister! Even if she is not making the right decisions for herself right now, thank goodness she has you. Hopefully after she's been home a while she will start to take on a little more, perhaps she will realize that you've helped her back into her home and understand how fortunate she is for that. I guess only time will tell as to whether or not she will start to take on some responsibility or just assume that you will be doing it all for her. I think this would be a very difficult position to be in...you are a sister and caretaker but also an individual. You have your own life and health to consider. Don't ignore it. That could lead to some very bad results. Take care of yourself, don't put off your own needs.  

[tnd]

So today my brother tells me that due to a time crunch (vacation hours he is allowed) that they might be sending my SIL here soon to help me sort through stuff and clean while my brother comes a little later with a moving truck. In other words, it's now "we have to hurry up and do this". But he (gee, I feel so lucky!) is giving me until the first/second week of August to be ready. 

Well, I told him that I don't need the help to sort through stuff or clean but thanks for the offer. Also told him that I don't mean to sound testy but that I have not only lost my husband but that in that instant, I also lost my freedom to make decisions for myself and have choices. I went on to say that when I lost my husband, I lost my home, my freedom as an individual and healthcare and now any plans I want to make or decisions I want to make for myself will have to first be discussed with others (him and SIL) and that I will be a guest in someone else's home. I hope that didn't sound too rude or selfish of me but in a way, I am glad I stood up for myself. My brother has a habit of charging ahead with his own plans before considering others. He's been like this many years...he's a retired military officer and hate to say it but there are times that he treats everyone as if we are his soldiers. His wife is no better. Makes me feel like crap and I hate it. I hate that I am even having to think and take care of all this crap. No peace.... 

[KayC]

I understand.  And we can't change people.  I'm having a hard time with how my sister is and how much that's usurped my life...I understand how hard this is all for you!  We do need to stand up for ourselves sometimes, and you try to balance it with gratefulness to have a roof over your head, very hard!!!  Know my heart is with you.

And when I went to my sister's yesterday she had her oxygen on, that was good.  Electrician coming today or tomorrow.  I guess I'll be paying her bills and nudging her to make calls only she can make.  Trying not to overwhelm her, I had a list but trying to prioritize, one thing at a time and we'll get somewhere.

Sorting through stuff can be very daunting in itself.  I hope you'll pull out those things you want to take with you and never want to let go of, next the things you need to live (clothes, Rxs, personal care, etc.) and maybe then it'll be easier to go through the rest.  I wish I could help you...alas I have years of stuff I need to go through and have not began to tackle!  I can't imagine doing this so early on.

I'm sorry your brother comes across so hard, even knowing it's how he is and what hie's used to doesn't necessarily make it easier to deal with. 

[tnd]

10 hours ago, KayC said:

I understand.  And we can't change people.  I'm having a hard time with how my sister is and how much that's usurped my life...I understand how hard this is all for you! 

I think you hit the nail on the head..."we can't change people". I am either going to have to accept that this is how he is and live with it or change the way I look at it and how I  deal with it. He tried to guilt me a little bit after I stood up for myself but, I reread is message and realized he was just being honest about his own life and what is on his plate. When I look at it that way I realize that saying what I said was good but that it was also good that he said what he said, instead of either of us just going off on the other. I think he is going through great effort to accommodate me, just doesn't necessarily "sound" that way.  

 

10 hours ago, KayC said:

And when I went to my sister's yesterday she had her oxygen on, that was good.  Electrician coming today or tomorrow.  I guess I'll be paying her bills and nudging her to make calls only she can make.  Trying not to overwhelm her, I had a list but trying to prioritize, one thing at a time and we'll get somewhere.

The oxygen can only help her. It may not be enough for her to recover her full strength or full mental capacity but it WILL help. Be aware, when people who are on oxygen feel under pressure or get stressed, their bodies use up/need more oxygen just to breath and to be carried/circulated to the rest of their body. I know firsthand how something can suddenly make me feel under pressure, like if someone is standing and waiting for me, my whole body and my lungs kind of seize up and I darn near hyperventilate. Even if the person waiting for me is telling me to take my time. For some reason it puts pressure on me. Now, I didn't mean to veer off the subject but this ties in with what you are doing for your sister and "accommodating" a family member, whether she is moving in with you or not. You are a caregiver for her and one heck of a nice sister trying to work with her so that she can stay where she wants to be -her own home. Kudos to you! I hope you find some little way to reward yourself at the end of the day...a nice tea, bubble bath, special meal? Gotta pamper ourselves sometimes.   

[KayC]

She wasn't on oxygen prior to her fall, but having broken ribs that hurt when you take deep breaths, it stands to reason you don't get enough.  She excitedly told me her oxygen greatly improved on it yesterday.  She may be able to get off of it after they've fully healed, esp. as she's in her home and when things settle down.

She called three times yesterday at an hour each, I think she forgets we've talked, I try to be patient although I must admit I have less time for Kodie and I now.  I hope and pray I do not get dementia someday (my mom had it as did her brothers), it's my worst nightmare and I try to place myself in her shoes dealing with everything she is going through, my heart breaks for her.

13 hours ago, tnd said:

I reread is message and realized he was just being honest about his own life and what is on his plate

I have found this to be true for myself, that sometimes something just hits me wrong, and it takes going back later and revisiting it to see the context of where they're coming from, not just how it hit me.  You are wise indeed!

[tnd]

I think that after I get moved in that I will call a meeting with my brother and SIL. I don't know how I will say it but I think I need to tell them that while I appreciate their efforts and ideas to help me get better (from my illness) that the reality is, is that I am not going to get better. There is no cure for Sarcoidosis. The most I can hope for is to either maintain and through treatment slow the progress of the disease or go into remission. That may sound negative to some but for me the sooner I accept the facts then perhaps the sooner I can move forward and stop being angry and sad over my condition. To me, it is more negative to fight against something that I cannot beat. I would rather accept it and learn how to live with it. Some people do die early deaths from Sarc while others live long lives. I just don't want to fight these emotions anymore. I want to try to look to the positive and how I can live with limitations, etc, etc.. I bring this up because my brother and SIL seem to think that with the right exercise I will "get better". After talking to my SIL about it, she said "Oh, it sounds like you need to work on endurance!" No...that is not what I need to work on. While exercise may help (certainly won't hurt) it is not a cure. I am breathing with just 49% lung capacity. That means I am basically breathing on one lung. That will never improve because I have lung scarring and that is permanent. So no amount of "endurance training'" is going to change that. 

Next, I want them to hear it from me how it feels, how it REALLY feels to lose your spouse and personal freedom. Now I will be living in someone else's home and until I start receiving some sort of financial assistance (Social Security, Widower's Benefits, etc), I will be financially dependent on my brother and SIL. I am now going to have to tell them when I need or want something. Imagine this...having to tell someone what kind of toothpaste you use. Or what kind of deodorant to get you. Or what kind and size of underwear to order. See what I mean? I am losing my privacy. I've already mentioned some things to my SIL and she went into a conversation about getting a better deal elsewhere and on and on...before I knew it, nothing I had mentioned to her mattered. Then she went on to talk about health insurance and Medicaid and disability. "I have a friend who said this and did that" she said. Okay, like I am really stupid and haven't already started doing my homework on this stuff. Much of what she told me wasn't correct. But do you think she'd listen? And so, with the loss of my privacy, so goes the loss of my individuality and ability to make my own decisions. 

Last but certainly not the least, I am GRIEVING for damn sakes! I am in terrible pain from losing my husband. I cry every darn day. But nope, I am being told "hey, just another month or so and then you can start the healing process but first you need to sign up for assistance and get moved, so just another month or so...". Okay, I get that but you know what? I've been saying that EVERY MONTH to myself for the majority of this year now. Every month that would go by and my husband was still in the hospital I'd tell myself, "okay, maybe he will be better and get to come home next month". I said that for several months, month after month and then...he died. And now I'm being told to keep telling myself "just another month or so...".  Okay, I will do my darndest to hang in there for another "month or so" but after I get moved, I want to 'efin GRIEVE in peace without anybody telling me what to do and how to do it. 'Nuff said. Sorry this was so long but needed to get that out of me. 

[foreverhis]

1 hour ago, tnd said:

That may sound negative to some but for me the sooner I accept the facts then perhaps the sooner I can move forward and stop being angry and sad over my condition. To me, it is more negative to fight against something that I cannot beat. I would rather accept it and learn how to live with it. Some people do die early deaths from Sarc while others live long lives. I just don't want to fight these emotions anymore. I want to try to look to the positive and how I can live with limitations, etc, etc.. I bring this up because my brother and SIL seem to think that with the right exercise I will "get better".

ARGH!!!  I get this, completely.  I have multiple auto-immune conditions that I developed over a number of years.  For quite a while, I fought against the doctors who were telling me the truth.  I got extremely depressed (situational) and was angry at the universe.  Like it wasn't enough that John had nearly been killed in a bicycling accident several years before that, but "Hello, let's see how much more you can handle before you completely lose it."

And so I got "friends" and a few family members telling me about this or that supplement that would "cure" me, sending me articles about how this one person went into remission by doing whatever-weird-thing-that-a-quack-is-selling-for-$1000, advice on what to eat and to just exercise more and think more positive thoughts and on and on.  It took a long time for some people to come around; some never did and so we lost them as friends, if they ever truly were.

Once I did start figuring out what worked best for me, which medications helped and which didn't, which activities helped and which made things worse, and how to stop fighting it, my overall life improved.  Same with John and his permanent physical problems from his accident.  We had to forge a completely different life from the one we had been living, a smaller and quieter life together.  But there it is:  We were together; we supported each other through the hardest times, as well as the joyous ones.  We were bonded at a cell-deep level that made the worst days tolerable.  The changes did place limitations on us in so many ways, but our love was unlimited and we were content to just be us together once our daughter moved out onto her own.  Fortunately, she was almost a young adult when John had his accident, so that made it a little easier.

Indeed your brother and SIL will have to understand that you will not get "better," but that with your doctors helping and with their understanding and support, you can keep yourself in the best health you can be.  Maybe you can have them read a couple of articles or talk to your doctors at some point?

I don't know why some people who have no information or medical training feel entitled to tell us how to treat our medical conditions.  It's worse when they act like, "It's all in your head and if only you had a more positive attitude (or some other stupid thing), you'd be cured."

[tnd]

55 minutes ago, foreverhis said:

Indeed your brother and SIL will have to understand that you will not get "better," but that with your doctors helping and with their understanding and support, you can keep yourself in the best health you can be.  Maybe you can have them read a couple of articles or talk to your doctors at some point?

foreverhis: Thank you so much for the support, I need that. I need someone in my corner who gets it. I just couldn't contain my anger today and all the while, crying over missing my husband. Since I have suggested that they read up on my condition and provided links, etc, etc and obviously they haven't, I think that once I am there I will have one of them come to one or two doctor's appts with me. Then they can hear it straight from the horses mouth. They can watch me go through pulmonary function tests. All of it.  

[foreverhis]

4 hours ago, tnd said:

foreverhis: Thank you so much for the support, I need that. I need someone in my corner who gets it. I just couldn't contain my anger today and all the while, crying over missing my husband. Since I have suggested that they read up on my condition and provided links, etc, etc and obviously they haven't, I think that once I am there I will have one of them come to one or two doctor's appts with me. Then they can hear it straight from the horses mouth. They can watch me go through pulmonary function tests. All of it.  

I'm here for you, any time.  I am absolutely in your corner 100%!  The anger you felt today was completely reasonable and justified.  Not that we really need justification for how we feel; feelings simply are what they are.  My symptoms were terrible during John's cancer fight and for months after he died.  I put off my own health needs because they weren't as important.  I am certain that your grief is making things worse for your health too.  Plus, you're dealing with the added stress of moving, not having time to simply let yourself grieve.  That your brother and SIL are so clueless about your condition is infuriating!

I have cried and been angry over the fact that there is an ear revision surgery I have now needed for 5 years.  But it's just a piston replacement for my stapedotomy.  We were planning the timing of it when John was diagnosed, which obviously took precedence over everything else.  I doubt I'll have it now because I need someone with me basically full time for 2 weeks at home afterward.  I'm sure one of my sisters (by birth, in law, and by choice) would come here for me and I know my local friends would rally around too, but that's not the point for me.  I want John here to take care of me like he did the first time.  I want my love, who has seen me at my best and worst.  I want the man who won my heart with the very first smile I saw.  I don't want anyone else.  Other members have mentioned similar feelings when they've been faced with medical procedures and surgery.  Down the road I will need a knee replacement.  I am dreading it.

I wish your brother and SIL had read the information you gave them.  Here we are again with people who have no information and no medical background blithely telling you that all you need to do is exercise!  I think it's a fantastic idea to have one or both of them accompany you to doctor's appointments.  Maybe they'll actually listen to him or her.  Better will be to see you go through your testing, etc.  Maybe then they will have some understanding and compassion.

And yes, you need to be allowed time to grieve, on your own.  Even if that on your own is in a single room, it's necessary for your mental and physical health.

I'm so sorry you have so much piled on top of losing your love.  It's so damn unfair.  (Sorry for the swear, but it seemed warranted.)

[KayC]

tnd, I agree with you 100%!  I am a realist.  It's taken me years to get my sister to respect her limitations rather than take chances, then the therapist comes along and wrecks everything I've worked for, wanting her to take risks (which will result in more falls/serious injuries).  NO!!!  She's 77, they should have worked with her in her 20s, she damaged her brain at 23 which resulted in no equilibrium.  NOW they want to work with her on it?!  They're insane.  I have had injuries that are permanent, pain that is permanent, loss of strength.  Surgery worsened my hand, I'm not about to let them touch the other one.

But whether my condition is controversial or not, yours certainly is not.  You have a better grasp than others, so I hope you can get your brother & SIL to understand.  Good luck to you!

[tnd]

4 hours ago, KayC said:

But whether my condition is controversial or not, yours certainly is not.

KayC:  Are you talking about your hand condition being controversial? Sarcoidosis is controversial too only because the internet says the majority of people who have it get better -with NO treatment! However, but for about 10% of us, we have the more severe chronic form. And that was the first thing the doctor said after doing a biopsy. He said I had a very advanced aggressive form of it. I get the feeling my brother and SIL think I will just magically improve with some endurance training. BTW, your hand condition IS a serious one. I've seen firsthand how the condition affects a person. And it also cost them their job. So I PRAY you continue doing what you KNOW is best for your sister. None of these people have lived it.  

[tnd]

15 hours ago, foreverhis said:

I want John here to take care of me like he did the first time.  I want my love, who has seen me at my best and worst.

foreverhis:  And that's just it. No one else knows us quite like how our husband's did. And no one could console or comfort us when we were sick or injured like they did, either. Our personal care is so well, "personal". For many months now that I have been home alone I have had to figure out how to do things. I am not very good at it, not at all but I've managed and have not needed to call an ambulance. I've got a routine of sorts and it centers around my own acceptance of what I can/cannot do today. Some days I can do a little more, other days I am in bed. But I am working so hard to accept that. And now, as if that weren't enough, I have to accept what I will say is the biggest challenge and hardest thing in my life -the loss of my husband. For anyone to just come along and start telling me that they have a better plan just really hit me the wrong way. I know they mean well, my mind and heart knows they mean well but I feel like I am "being told" instead of "asked". It's like anything I've already told them doesn't matter because perhaps they think I am in such a weakened state that I can't possibly know what I'm saying so it will be their role to "fix me". I wonder if this is one reason why some people end up alone and homeless on the streets. They couldn't take living with family. Maybe no one listened to them.      

[KayC]

16 hours ago, tnd said:

Are you talking about your hand condition being controversial?

Well let's just say people don't take it seriously that it is debilitating and most likely permanent.  I have to hire my yard work done now and discovered last night he didn't trim over the graves in my back yard as I specified so I went out with my manual mower and did it, I didn't care if it hurt or whether I could or should, I just did it in memory of my departed pets as it bothers me to see things growing over their graves.  At least he trimmed the trees hanging over them like I asked.  So hard to not be able to do the things I used to!  I know you feel that as well.

[tnd]

8 hours ago, KayC said:

Well let's just say people don't take it seriously that it is debilitating and most likely permanent. 

KayC:  Ah yes, the old "because they can't see it or we don't necessarily show the signs that we have a condition", people think everything is just peachy. Some conditions are invisible, making it even harder to explain to people. I think once my brother and SIL actually see me (the oxygen tubing up my nose, the labored breathing with pursed lips and the shuffle walk I do) they might realize that this is something that endurance training can't fix. My hands shake and now food falls off my fork. So I'm slow at eating too but gosh darn it, I keep at it. Nobody has to spoon feed me. At least not yet. But I'm still going to take one of them with me to a doctor's appt. I remember one of my doctors literally turning gray when he gave me the diagnosis and the first words out of the one that performed the lung biopsy were "It isn't good". 

I desperately need my brother and SIL to realize and then accept that the fact that I am able to bathe and dress myself and perform small tasks IS "doing good". My condition is not like being out of shape or that I've let myself go and an exercise plan will fix me back up. I am purely in survival mode now. And with the passing of my husband I have lost my #1 cheerleader and purpose for waking up each day. But if that weren't enough, I now have to read and navigate through tons of ridiculous insurance information and Medicaid information (which is already mind boggling to even those who are healthy) AND...sort through stuff here in the apartment and start cleaning and packing. And grieve. I am so wore out. I'm angry. I am in survival mode and having to explain it to my family and absolutely dreading this move. Normally I would consider myself to be one of the most positive, strongest and patient person there is. I would think it would be okay if I can't be any of that right now. 

[Gail 8588]

Yes tnd, it's okay for you to not be positive, strong, or patient when you are in the first few months of grieving the loss of your husband. 

It is very nice that you are trying so hard to be positive, strong and patient.  But your brother and his wife should be understanding if you lose it from time to time. 

I hope they will be supportive and understanding. 

Gail 

[KayC]

Oregon has free insurance (OR Health Plan) to those low income, it covers everything, you don't have to be a certain age, anyone can be on it.  I hope TX has something like that.  The ins. paperwork can be daunting, esp. when getting Medicare age, ugh.  

You are so right in your assessment, just keep giving yourself credit for how well you are doing under the circumstances!  I wish it wasn't so hard...

[foreverhis]

On 7/11/2021 at 4:17 PM, tnd said:

Ah yes, the old "because they can't see it or we don't necessarily show the signs that we have a condition", people think everything is just peachy. Some conditions are invisible, making it even harder to explain to people.

Definitely!  For John and me (and maybe others), we made it worse for ourselves in a way because we tried to seem "normal" and the way we had been as much as possible, especially around friends and family.  I guess it was kind of like the equivalent of saying, "Fine" to "How are you?" when we are far from fine and will never be the same fine again.  Of course, all of us here know how that feels related to grief, so you'd think I would have known better than to spend so many months putting on "the brave face" after John died!  It didn't help when we had to face permanent health issues.  Why on earth would I think it would help when I lost the love of my life?  Sigh.

I think part of it for us was we were in denial for quite a while.  We didn't want to hear that a bicycling accident that nearly killed him (thank God for helmets!) and that drove his sheared collar bone into his lung, cracked ribs and a scapula, damaged his optic nerve, and caused a mild TBI (where symptoms often don't appear until years later) might have changed his physical abilities forever.  And oh no, I couldn't possibly have multiple and permanent auto-immune conditions.  Sure, let's just forge ahead as if nothing had changed until we both absolutely could not deny it any longer.

But because our disabilities weren't immediately visible, even our daughter had a hard time understanding them, at least for a few years.  She was 18 when her dad had his accident and at an age where she was comfortable with the life we had, a little scared about college/the future, and basically counting on us to stay the same.  Plus, that's an age where it can be "all about me."  Fortunately, she is also smart and sensitive and came to understand the realities and, once my own conditions developed, she accepted that our issues changed her life too.  In a way, it made her more empathetic over time and more sensitive to other people's challenges.

Lord knows being ill and having medical challenges is hard enough without living in a society that won't tolerate anything but perfect health and a positive outlook.

[tnd]

41 minutes ago, foreverhis said:

For John and me (and maybe others), we made it worse for ourselves in a way because we tried to seem "normal" and the way we had been as much as possible, especially around friends and family.  I guess it was kind of like the equivalent of saying, "Fine" to "How are you?" when we are far from fine and will never be the same fine again.  Of course, all of us here know how that feels related to grief, so you'd think I would have known better than to spend so many months putting on "the brave face" after John died!

foreverhis: I was good at putting on that brave face when it came to my health condition but with grief, I am totally lost as to how to act or what to say. It's not like we want to wear a sign on our backs saying "We are grieving" but I know I may not be focused, might screw something up or be moody or teary-eyed and I'm lost with how to handle that sort of situation. And I don't necessarily want to have to explain to everyone I encounter that my husband passed away. My family is a different story... 

[tnd]

Need to vent...my brother and SIL act like they don't live in the same house or talk to each. The left hand does not know what the right hand is doing and NEITHER one is listening to me! They keep asking me about what I need and when I tell them, they go off on their own ideas. So why do they even bother asking me? Why? My brother told me to email my SIL the O2 equipment I use because they want to buy it for me. The type I use is for very specific reasons/needs and I included that in my email. Not all equipment is the same. In fact, I've been telling both of them over and over about it, trying to educate them. I also told them that I do not expect them to buy me the equipment because it is very expensive. So what do you think happened? My SIL bought one piece of equipment and said she talked to a supplier about the other piece I need AND...she wants ME to call the supplier and work out a good deal with them! She then went on to complain about how expensive the equipment is. And no joke, in the same email, she told me and even included a nice little picture of an electric scooter she bought for me. Okay, that's nice but I DID NOT ASK FOR A SCOOTER, EVER! And they are very expensive. Do you see what I mean? They say they want to help and then when they do, they seem to think it's open season on me and can turn around and complain to me about it. 

I sent them both an email telling them that I feel I am not being heard. I also went on to say that I do not expect them to understand what I am going through because neither of them have lost a spouse and neither of them have a serious illness AND dealing with a move ALL AT THE SAME TIME. I further went on to say that I cannot be asked to do anymore "you need to call here, you need to take care of this, should do that" type stuff. My plate is overflowing and I cannot do or think of any more now. As for buying me O2 equipment, I told them that I already told them it was expensive and do not expect them to buy it for me and that I will deal with insurance coverage after I move. The insurance I have now was based on my husband's income and only good in the state I live in. If I call the insurance company right now, I risk not being covered until I move and I need my medicine and O2 equipment. If I hook up now with insurance in another state, they will shut down my current insurance plan and I can't have that happen right now. 

Anyways, I am just so exhausted from explaining things over and over again to my brother and SIL knowing I am just wasting my breath because they are going to do what they want to do. I am darn near the point of calling this move off and contacting Social Services for help to see if I can get into one of those group homes for the indigent that puts a bunch of people into one house with one bathroom. Yes, those do exist and it is sad but those people aren't on the street. It may be better than losing my sanity from living with "family".  

[KayC]

tnd,

It's very hard when people don't listen.  None of us can tell you what to do but this I know, you are sharp, you are aware, you have good judgment, I can tell that from what I've read here already, and I trust you to make the best decision for yourself, even in this horribly trying time when you'd rather crawl into a hole and nurture yourself, God knows you could use that.  My hope is once you are settled in your new home you will be able to do just that...please call and talk to adult and family services in your area about what options are available.  (((hugs)))

[tnd]

10 hours ago, KayC said:

It's very hard when people don't listen.  None of us can tell you what to do but this I know, you are sharp, you are aware, you have good judgment, I can tell that from what I've read here already, and I trust you to make the best decision for yourself

Thank you, KayC. I needed to know/hear that. Because I don't feel like they are listening to me it makes me feel as if I can't make my own decisions or know what I am talking about. They also tried marginalizing my grief by comparing to others -not the same!

Anyways, because they think I'm too stupid, they feel it's their duty I guess to step in and act like they know what's best. I also get offended whenever I am being ignored. They have a history of treating me this way and it must stop now. Which is one reason why I told them I want the 3 of us to sit down for a talk when I get there. Meanwhile, the firm email I sent them yesterday seems to have gotten their attention. For how long tho is anybody's guess. It's kind of weird...my brother will say one thing but I'll hear another from my SIL. It's almost as if they don't talk face-to-face and I am just wondering if this is any sign that they aren't getting along. Maybe they are having marital troubles. Maybe they really don't talk face-to-face. So when I sent out that "firm" email yesterday, I sent it to both of their email addresses at the same time so they both were reading the same message from me. I mentioned that I had already "told them this and told them that" in previous emails...I brought it up to draw attention to the fact that I get told different things by the 2 of them. Maybe this will force them into actually making decisions together before telling me what their plan is. I don't know...we'll see. Meantime, I did a little research on Adult Services and only found housing and assistance pertaining to the elderly who are on Social Security. The homeless still have to go to the shelter and they are filled up. I rested for the better part of the day today. Got up at my usual time at 5am to feed my 2 fur babies and sat up for a while then went back to bed. I didn't give a care in the world to anything, just rested. I needed that. 

[KayC]

17 hours ago, tnd said:

They also tried marginalizing my grief by comparing to others -not the same!

No, never the same!  Our grief is as unique as those involved and our relationship!  It's not a one-size-fits-all, either.

Sometimes people treat others with disabilities differently.  My sister Donna had a very clear mind and intellect but because she was in a wheelchair (quadriplegic from a car accident when she was 25, in which the emergency responders severely damaged her vocal chords with their ER trach) people would either talk over her to us or raise their voices as if she was hard of hearing (she was not).  We would instruct them to talk to her directly.  If they couldn't understand her response (it often sounded garbled) we'd give her a chance to repeat herself before jumping in and "interpreting."  I realize people don't have a lot of time/patience, but sometimes they need to slow down and TAKE the time!  It could be them someday.

I have a friend who is on disability and gets housing assistance, free health ins. etc.  He was set up in OR but when he moved to TX and established residency there it changed things so when he moved back here, he has to fight the system to get benefits restored all over again.  Not fun, quick, or easy, but it'll happen with perseverance.  It can take a couple of years of being on a waiting list to get housing, but sometimes one gets lucky.  I've seen it happen within a month as well.

[tnd]

5 hours ago, KayC said:

No, never the same!  Our grief is as unique as those involved and our relationship!  It's not a one-size-fits-all, either.

KayC:  I know they meant well with their comments about "understanding" but they really don't understand. Unless they've gone thru losing a spouse they can't. I can see that this will have to be part of the talk I plan on having with them when I move in. And they will have to realize that I am super sensitive right now. If I bite, bark or growl they will have to keep in-mind that this whole grief thing has got me on a rollercoaster of emotions. And so does the stress of moving, medical insurance, new doctors...and I am dealing with it without anyone here right now. I don't know if it will get any easier after I move but I guess I can still hope for it. 

BTW, concerning how people with disabilities are treated...when I was still able to and could go to the grocery store with my portable oxygen, I noticed right away that people looked away from me. I'm the smiley type and was so used to having people look directly back at me and smile. Not now. I guess they don't want to give the impression that they are staring and I get that but gee whiz, I miss looking at people in the eyes and the smiles and even the "how are you doing today?" bit. My hope is to get well enough again to go out shopping and when I do, I can't wait to figure out how to get people smiling. 

[tnd]

Another rant today...Seems that for the most part I am calm, even when I cry. My whole day can be relatively quiet and calm but then...I read emails. Every time I get an email from my brother or SIL I find myself upset and angry and then cry some more. I just got chewed out for something I didn't even say....all because one of them either did not fully communicate with the other or else one (or both) of them are confused OR...one of them intentionally has left out some valuable information when talking to the other. Like I said before, I swear, it's as if they don't talk to each other face-to-face. They act like they are living in separate houses. And I am stuck in the middle getting chewed out because of somebody's miscommunication. This is the kind of thing that has me worried and makes me wonder if I should just find other living arrangements. Where, I don't know but I don't know how long I'd last if I have to live in "crazy family land". Okay, I'm done ranting. At least for the moment. Now I have to go cry. 

[KayC]

13 hours ago, tnd said:

And I am stuck in the middle getting chewed out because of somebody's miscommunication.

I am going through that now with someone but nowhere near as affecting as your situation.  It's hard to go through, and I hope you can find your way through this.  Know we all understand.  God you've been through it!  And in such a short time!  It's a lot.

Maybe all of this is to show you that this isn't the living situation for you?  IDK, just wondering aloud.  You need disability recognition for sure so you can get helps.

[tnd]

10 hours ago, KayC said:

I am going through that now with someone but nowhere near as affecting as your situation.

KayC:  It's hard when the communication between people suck. Especially when it's "he said, she said" going back and forth. But it's more than that. I feel like I am not being heard. They ask me a question and I answer but then it either gets twisted or they just forge ahead with their own ideas. It makes me feel as tho I don't know what I am talking about. It's as if overnite, beginning the night my husband passed away, I am no longer in-charge of my own life and decisions. And it's exhausting to get all the miscommunication straightened out without blowing a gasket. I am so nervous about this move. Maybe once I am actually there and see what the dynamics are between my brother and his wife I will have a better handle on how to approach them or which one should be approached. But I am also keeping the thought of other housing arrangements in-mind. Either there or here but maybe not actually IN THEIR home. 

I sure hope your own situation concerning communication and planning gets easier. It's quite maddening to say the least.  

[KayC]

I feel for you, tough choices to make, just when you feel least up to it.

Have you had an audience with social security/doctors about your disability?

[tnd]

6 hours ago, KayC said:

Have you had an audience with social security/doctors about your disability?

KayC:  I have a phone appt later this week to start the process. Meanwhile, Medicaid approved me for "Free Birth Control"....I'm 57 and can't have kids. My laugh of the week. 

[KayC]

16 hours ago, tnd said:

KayC:  I have a phone appt later this week to start the process. Meanwhile, Medicaid approved me for "Free Birth Control"....I'm 57 and can't have kids. My laugh of the week. 

This made me laugh too!  Hysterical!  Aside from the fact you're disabled and your husband is gone, good grief!  I love these forms that ask me if I'm pregnant...I'll be 70 next year, and have been celibate for years, what do they think!  Maybe they think I'm Sarah (& Abraham)!

I'm glad you have a phone appt. scheduled...crossing my fingers and sending up prayers!

 

[tnd]

I feel I am overwhelming my brother. More grief.. He's trying to satisfy his family and be a good dad and be home on the days/nites his youngest son plays football. He's a senior in high school so this will be the last year my brother can watch him play before he leaves for college. My brother is also trying to coordinate my move. At first he said he was coming with his own pickup truck and large trailer to pack my stuff in. Now he's trying to get quotes from moving companies to do it. Got an email today from him telling me to call a moving company back in the morning to arrange a time for them to come over and look at all my stuff so they can give him an estimate. What?! Not only do I NOT want people in here right now but I still need to do at least a little cleaning...it is a filthy mess and way too embarrassing to let anyone see it this way. But every day I have had to deal with other things being added to the "To Do List"...phone calls, paperwork, etc...  I am too sick to be able to do multiple things in a day. I choose one thing to take care of and then that's all I can deal with for the rest of the day. Right now, just getting out of bed is an achievement. But I do understand where my brother is coming from. He's just trying to take care of me and his family at the same time. I hate this. But I honestly think I have to stand my ground on this one. I keep telling him over and over that I am sick and very limited as to what I can do each day. Guess he thinks it's not that bad...but wait until he sees me. I've had people deliver food to my door that have gasped at the sight of me. I know I look bad so do not take offense. This is what sick people look like...terrible. So no, I am not going to have movers come in here just to look over my stuff. 

[Gail 8588]

Tnd, 

I am so sorry all of this is crashing down on you.  So much change is terribly difficult.  

I understand your desire to not have strangers come into your home.  But I think you will find the estimator who comes will not only not be judgmental, but will be quite sympathetic.  They often have to come to homes where there has been a recent death.

When you call you will be able to choose the day they come.  Hopefully you can pick a day  when this will be the one thing you have to accomplish. 

I know this is unfair, miserable, and exhausting this is. I too had to move shortly after my husband died.

My heart goes out to you in this very difficult time.

Gail

 

[tnd]

1 hour ago, Gail 8588 said:

I know this is unfair, miserable, and exhausting this is. I too had to move shortly after my husband died.

My heart goes out to you in this very difficult time. 

Thank you for your support, Gail 8588. I actually found solace in your kind words, it helps. YOU help! All the stress is catching up to me. My mind is racing. I've cried all day. I had a phone interview this morning with the Social Security Administration to apply for Widow's Benefits. I'm not 60 so don't qualify for Survivor Benefits but might for Widow's Benefits IF they deem me as being disabled by the Pulmonary Sarcoidosis. They have to contact my doctors and it's a whole process. The interview was an hour long. It was stressful and I felt sick but got through it. I let my brother know and I don't know why but, I was expecting some sort of kudos. Instead, I got a "what's next?" and then that's when he began talking about movers. I had just wished he would give me some sort of pat on the back or cheer me on. Anymore though I dread what else he or anyone is going to add to my "To Do List". This is the price you pay when you don't have your own money. Otherwise I'd probably just disappear for awhile to rest, grieve and get my head straight.

Later I offered my brother an easier way and said that I could just call junkers and have them do a total trash out and take all my belongings. I said I could move with 2 suitcases if that would make it easier on him. He didn't respond. So I suppose now I am in the doghouse for that. Oh well. I don't care. And I don't really care about my furniture or belongings...losing all of that STILL wouldn't be as bad as losing my husband. I've got so much going on right now I feel I should at least be given multiple personalities or be cloned to deal with it all. 

[KayC]

Gail is right, the movers have already seen everything, they will not feel judgmental.  Have them come before you clean, etc, you don't have to look good, they'll understand better how limited you are.  I totally understand your trying to accomplish one thing a day and that is a good goal to shoot for!  YOU JUST LOST YOUR HUSBAND!   You're going through way too much.  Most of us aren't under pressure to move immediately after losing our spouse, that feels like the straw that broke the camel's back.

I have severe hand pain and loss of strength, no one gets it, it is not visible and everyone expects me to carry on like I always have, but I can't.  I don't want people coming in here and judging me for not dusting my craft room (what you see when you walk in the back door, which is what most people use).  I can only do what I can.  

I understand your wishing you could be cloned to deal with everything.  Me too only it wouldn't help because my clone would also have my bad hands. 

 

[tnd]

Well, I've made the decision to go with what will be easiest on my brother and SIL, as well as for myself. I am going to arrange for the Salvation Army to pick up all my furniture and basically, with the exception of a few personal items, all of my belongings. All of it. That way I can leave out of here without costing my brother and SIL anymore than what I am already costing them and without the headache of the three of us going back/forth about movers. And by donating my stuff I know it will go to those in more need of it than I am right now. There is no sense in having my brother come with his trailer and hire movers to pack it up, only to have it sit for god-knows-how-long at his house in the trailer or his barn. And that's where he said it would have to sit. Chances are though, it will be a long time if ever that I will have a place of my own again. May as well just be done with it and donate everything I can now. 

I will be packing two suitcases and maybe a couple of boxes but that's about it. Thank god I get to keep my cats. I've done a lot of moving in my life and always had to leave stuff behind but never have had to give it ALL up. I wonder if this is what elderly people go through when they have to go live in a nursing home. They usually don't get to take all of their belongings with them, ether. But I'm only 57. But I am sick and probably should not live alone. And I can't afford to. I am very lucky to have a brother who is willing and able to take me in. I must look to the positive now, although at the moment it is hard to. In fact, I am at my bleakest of bleak times. But, chin up! I've got to do this whether I  think I can or not. Every day now I wake up a different person. Changes...

 

[Gail 8588]

Tnd, 

That may be the best choice, but I hope you talk it over with your brother.

I know that putting furniture in a paid storage unit often ends up costing more than the furniture is worth.  Placing it in a barn may end up having it deteriorate (from humidity, bugs and rodents) to the point that you wouldn't use it in the future anyway. 

So there certainly is an argument for giving it to people who will be able to use it now. 

But I would discuss it with your brother.  He may be planning on using your bedroom furniture in your room, or there may be room for a nightstand by your bed. 

I know this is really hard.  

Gail

 

[tnd]

3 minutes ago, Gail 8588 said:

That may be the best choice, but I hope you talk it over with your brother.

Gail 8588: I did talk to him about it and he was more than eager for me to donate everything. I think they are now only going to have my SIL come to get me. That way my brother doesn't miss out on any of my nephew's football games. Because of Covid, the season got screwed up last year so they start early this year. I know that sounds kind of lame and it does kind of hurt but, this will be the last season he gets to see his son play because he'll be going off to college next year. I agree, he must put his son first. What can I say? "Too bad my husband didn't die AFTER football season?" I already feel like a heel having to move in with him so I knew I needed to meet him half way on this. Just another crappy part to deal with. 

[KayC]

I understand his wanting to see his son's games, there's no "redo" for that, but I also understand YOUR feelings!  It's hard to realize that after our spouses are gone, there is no one in the world that cares about us quite like they did, first and foremost.  Our siblings care to a point, but not like our spouses.  I've had this alone feeling for 16 years now.  My kids grew up and left home, never to look back either, it's just how it is.  If we have any interaction in our lives at all, we are lucky.

I called my son night before last and he actually picked up, we talked for an hour!  First time since Covid that I've gotten more than a minute with him and even that minute felt like I was intruding.  I understand he's busy, but...how different their lives are from ours now!  Mine's busy too but not of my choosing and not enjoyable since getting my sister & her issues.

 

[tnd]

8 hours ago, KayC said:

It's hard to realize that after our spouses are gone, there is no one in the world that cares about us quite like they did, first and foremost.  Our siblings care to a point, but not like our spouses

KayC:  I hadn't thought of it that way. Of course my brother and SIL can't care for me quite like my husband did. How could they? The relationship we have is not the same. I was thinking today that going forward, I am going to have to accept that my life will never be the same and that I'm no longer in the driver's seat. I have to "share" the "driving" now with my brother and SIL. I will just have to trust that decisions they make will have my best interest at heart but that I am going to be a part of a "family unit" now and there will be more people to consider. Not just myself or myself and my husband.  

[tnd]

8 hours ago, KayC said:

Mine's busy too but not of my choosing and not enjoyable since getting my sister & her issues.

KayC: I'm glad you finally got to talk to your son. It's none of my business but I hope you told him about caring for your sister. Or at least how much you'd like to hear from him more often. He should know what you are going through, if not for the fact that getting to talk to him makes you happy and you can always do with a little happiness!   

[tnd]

Was up bright and early this morning scheduling a time with the Salvation Army. The man on the phone was extremely nice and helpful. He spent a great deal of time fitting me in. Made me feel human again to speak with another human and not a robot. Everybody is working from home these days, but not these guys. Anyways, just that little bit wore me out so I had to lie down after that. Ridiculous. But I woke up and physically felt a little stronger, a little better. And no crying. Well, a little but not much. 

As sad as it will be to see all of our belongings go I do think it did me a little good to have scheduled the pick up time and where they will go. It was my own decision, sort of. I wouldn't have to be making this decision if my husband were alive but here I am. Alone and making decisions on my own now. My husband didn't collect a lot of things so the few small personal momentos he had are still going to go with me. We tried to not be too materialistic so that is paying off now. And the furniture is all in good shape, not junky. I know someone will surely need it more than I do. Hhmm...I think of my SIL and her problem with hoarding. Don't know how I am going to live with that. You can't change hoarders, they have to want to change and they need professional help. I will just have to keep telling myself that "it is not my house" and retreat to my assigned room if I get to feeling claustrophobic. And thank goodness they have a patio and pool area, another place I can fall back and retreat to. Wish I could drink but can't because of the meds I am on. But if I could, I'd for sure take my blender with me and make myself some of those yummy cocktails and put one of those little umbrellas in the glass and sit out by the pool like a movie star. Not every day but as a treat to myself. Heck, maybe I can make what they call a "mocktail" with no alcohol in it. Put on big sunglasses tho in case I cry.     

[Gail 8588]

Tnd, 

I like the idea of the mocktail hour. Some ginger ale and cranberry juice with a splash of pineapple juice over crushed ice with a paper umbrella, sitting by the pool with your sunglasses and floppy hat.  You can imagine your own little oasis. 

(I haven't ever consumed alcohol, so it's easy for me to do without it. But I like the image of the cool refreshing mocktail.)

Life without our sweethearts is so very different than life with them.  My experience has been that living alone, with a considerable amount of "our" furniture and belongings, is pretty difficult mentally. Too much alone time. 

At one point I mentioned to my son that I would like to move in with his family so I was not alone so much of the time.  That suggestion went no where.  I have not raised it again. 

I guess technically I am "in charge" of my life, but it is not the life I want without my hubby here.  So maybe living with your brother will be good in some ways.  With 2 teenage boys, there will be lots of activity.  It actually may be better than the sound of silence. 

Either way, living alone in your apartment or moving in with your brother, it is not going to be the life you had with your husband.  We can't compare this new existence to what we had with our loves. 

Gail 

 

 

[tnd]

2 minutes ago, Gail 8588 said:

At one point I mentioned to my son that I would like to move in with his family so I was not alone so much of the time.  That suggestion went no where.  I have not raised it again. 

Gail 8588:  I hope you bring up the subject again. Or at least let him know that you need some interaction or regular phone calls. I don't know if he is in the same city as you but if so, then visiting you or scheduling some time together should be easy. If he lives in another location then that would present a challenge. But still, hearing his mother ask for his help in the way of spending time with him or being with him and his family should not be a burden on him. It should be doable. Of course I really know nothing about your son's lifestyle and his families dynamics, these kinds of things could be hard to navigate. Guess I am very lucky that my brother offered to take me in. I didn't have to ask. He actually had offered it after my husband first went into the hospital and couldn't work anymore. He offered to move both of us in and then help us to find a cheap place to live, like a small condo that he could perhaps buy as an investment property and we could pay him whatever we could afford for rent. And then when my husband passed, he stepped up right away with plans to move me in. So I do realize how fortunate I am. It's just hard knowing that I will no longer have my own place, my own kitchen, my own "my own"....

     

[KayC]

12 hours ago, tnd said:

I think of my SIL and her problem with hoarding.

My sister and her husband were too.  I told my other sis it made me want to throw her catalogs away!    She doesn't want to part with anything.  If I had someone willing to help me with it, I know exactly what would go, but physically I'm unable to do it alone.

I had to laugh yesterday as I got a package in the mail, as soon as I saw what it was, I knew it was from my son!  I'd told him I'd lost so much strength in my hands that I was unable to plunge my toilet the other day.  He replied, "And that's not something you want to ask the neighbor's help with"  Just two days later I got a new plunger, accordion style.    These little things make me feel he cares after all.

I feel it wouldn't be so bad living on their property but I sure wouldn't want to be in their house!  Yes, I want my privacy, space, kitchen, quiet, so I can sleep my hours not theirs.  No way could I live with my DIL.  I would constantly know I don't belong there.  I always lived with my son just great but he comes with her now.

[tnd]

11 hours ago, KayC said:

Just two days later I got a new plunger, accordion style.    These little things make me feel he cares after all.

KayC:  That's funny! Yes, I'd say it shows he cares but also has a sense of humor...who gets a "surprise toilet plunger" delivered to them? He cares AND wanted to put a smile on your face. Seems to have worked. And I hope the new plunger does, too. I'm going to take all my bathroom stuff with me because I do not know if my SIL even has any of that stuff in the guest bathroom. I doubt it. Years back at another house they had, I visited my brother and SIL for a week. Her mother lived just down the road. She came over and when no one was around, she told me that if it hadn't of been for her the guest bathroom wouldn't have gotten cleaned. Yikes!