Where I Think I'll Be Going/Doing

[PrimeTimer]

If I don't go to Hell first I more than likely will be moving in with my brother and his family. He will be coming to rescue me late July/early August. I don't want to move in with him but have no choice. Nowhere else to go. Not looking forward to it but does anybody? I'm sure he and his wife aren't. I have a hard time getting along with my sister in-law but we are going to have to make this work. I feel like crap for invading their lives like this. Absolutely like crap. But I am grateful for their help. There is no one here to hold or hug me right now but I talk a lot thru emails with my brother. I imagine I will break down when he gets here but hope not.

My brother lives in another state far, far out in the countryside with the nearest town being quite small. The nearest doctors will be 20-50 miles away, depending on specialty. That will probably be alright since my current team only sees me about every 3 months as it is. Will have to get new insurance, my current plan doesn't work in my brother's state. And I don't qualify for Social Security Spouse Death Benefits -you have to be 60 and I am only 57. However, for those age 50+ I may qualify for Death Benefits if I am declared Disabled. So...will have to start that nitemare-of-a-process. SSI does not recognize Sarcoidosis as a disability. It's not even a category with them. I keep reading it could take 2-6 years to be approved but that you are denied the first two times you apply. I will have to get a disability lawyer. I dread this.

What I dread most is uprooting as a widow. Right now I try hard to think positive, I know he'd want me to. And I know he'd hate what I am going through. Maybe it was better that he went before I did. I find a little relief knowing that he isn't suffering in pain from illness OR grief. He lost his first wife so already experienced that pain. I guess it's a good thing that he didn't have to experience it again. Not that I am anything special but he would be grieving if it were me that had passed away. No, I am the widow now and the one grieving. And so much to do and deal with -quickly.

I don't know if I will ever have my own place again but my brother's place sounds nice. His guest room has it's own bathroom. That will be good I guess. He is out in the country on acreage. He says there are walking trails. And apparently my sis in-law gardens so maybe if I'm lucky she will let me have a small place to try some gardening myself. When we had a house my husband loved to garden; he knew what/when and where to plant things in the yard. Gardening could be a way for me to honor him. And it also might serve as a way for my sis in-law and I to connect better. I physically can't do much being on oxygen but I can do a little. I will want to make myself useful. Somehow pay for my existence and room and board.

For now, I start cleaning the apartment here and then packing will come next. My brother is either going to hire movers for me or come with his own giant trailer. We really didn't have much and some stuff I will donate or have junkers haul off. Let's' see....how many times have I started over?? I am glad that over the years we had pared down on stuff, material things just don't do much for me. We made it a habit to get rid of stuff we no longer needed or wanted. We did this once a year. Glad we did. 

Hhhmmm...I will be popping back on here every now and then to keep up on all of you. Thank you so very very much for the support over the years. You people are awesome. And you are very smart, very resourceful and very generous with your knowledge and time. The kind words you've always had for my husband and I meant the most. So if you don't mind, I'd like to stay on a little while longer. Can I sit and have another cup of coffee? lol   Love you all! 

[UkrainianTracksuit]

Pea Tea, you are always welcomed here. You are still a family member/were a caregiver to a loved one. We have also come to care about you, not just your connection to renal stupidity, as well.

I pray that all goes well with the impeding move to the home of your brother. It all seems like a lot right now but step by step, you'll move forward. In your packing and the process towards disability. It boggles my mind that Sarcoidosis is not a recognized disability. Still, retaining a decent lawyer will hopefully help you in the process.

Gardening will be a great hobby for you as it so attuned to the changes of the seasons meaning there will be work to do but also things to look forward to. And I'm sure your husband will give you some ethereal pointers along the way!

 Be strong. A long road is ahead of you but we know that you have already endured much so you will move forward step by step. You have experienced a lot already and it will be interesting to see how you progress in this new stage in life.

Will your cats be going you?

Take good care.

[cassandra]

Dear PT, I can only strongly agree with UT’s post. All the very best with the move to your brother’s.


I wish you all the love, and strength, and luck in the world, Cas

[SooMK]

I hope you will continue to let us know how you are doing. My mind boggles at the huge changes you are going through, one on top of the other, in the smallest amount of time imaginable. Your positivity in the face of overwhelming challenges will help you get through it. Wishing you the best.

[PrimeTimer]

Will your cats be going you?

UT: I hope so. I told my brother I don't want to be separated from them. They are both very affectionate but not sociable with strangers and do not like to be picked up. One was feral and the other just never did like being lifted. Because of that they wouldn't be adoptable at a shelter and I told (via email) my brother that. He hasn't answered yet.
His family have a cat and dog that they allow indoors/outdoors. So I am hoping they will allow mine to at least stay in the guest room with me. Mine are strictly indoor cats.

I've got so much to do and think about. Sure, being busy keeps my mind off of my husband but I'm tired out. The big thing will be getting new health insurance and doctors in addition to how I am to take or else obtain new oxygen equipment/supplies. I wonder if I will have to get a new Pulmonologist first that is allowed to write a prescription for oxygen in my brother's state since they do actually consider O2 a medical prescription. I don't know yet if I have to return what I have and start over at the next place or just take it with me and they transfer it in their system. The company I use seems to have an office about 30 miles from my brother. In either case, I need it 24/7.  I am reaching out to my current Pulmonologist for his help with this. Maybe I will just have to take it "on the lamb" or tell them I am taking it on vacation with me and then once there, reach out to their local office.

It's stuff like this that wears me out. Otherwise I'd rather just be packing up and getting the hell out of here. Been alone now for several months and everything about this place reminds me of my husband. I will take a few momentos of him but I am not taking everything with me. If I didn't have  to pack or deal with this place, I almost wish I could leave today. Not kidding about that.

Thanks so much to all of you on here. Your kind words, suggestions and comments are welcomed. Makes me feel less alone. This past year in particular has been a hell of a roller coaster ride. I want off now. As long as I'm not on the street or totally alone,  I can live anywhere. Hard to feel like moving forward when I'm stuck here dealing with "business" type stuff. Not having the physical capability I used to have doesn't make it any easier. Real easy to give myself a pity party and that's what I don't want. Hate this, hate all of this. Just want to move forward and be done with it. 

[MooseMom]

I was thinking about you last night, Pea Tea, and was wondering if you would still keep in touch via IHD.  So, I'm delighted to read your post and how you'd like to have another cuppa with us!  I hope you will continue doing just that as you enter a new phase of your life.

I am happy that you will be living with your brother and his family.  I hope this works out for you and that you will be happy there.  It's such a huge move in so many ways.  It bothers me, though, that it has to be so complicated, what with benefits and insurance and managing your medical needs.  I mean, it's not like you're leaving the country!  Just relocating to another state shouldn't be such an obstacle, and I am sorry you are having to deal with red tape.

I knew absolutely nothing about gardening, but when I moved into my first real grownup house, I suddenly had a garden to tend.  I am no horticulturalist, nor am I a master gardener, but I've managed to create a garden that never ceases to amaze me.  My paeonies were spectacular this year, and my lavenders are all blooming like mad.  Maybe your sister in law will let you create a little herb garden.  Nibbly little animals don't tend to eat them and so leave them alone, and they are useful in cooking.  I put chives on just about everything!

I am so glad that you care enough about us to want to keep in touch.  I for one would hate to say goodbye to you!  I really look forward to hearing all about your new adventures.

You take care.

[PrimeTimer]

So, I've made the decision to go with the easiest and fastest way and not cost my brother anymore than I already am. I am going to donate ALL of my belongings to the Salvation Army and they will come pick it all up. I will leave for my brother's with two suitcases and maybe a couple of boxes. My SIL will be coming to pick me up. Thank god I won't be on the street and I get to take my cats with me. I am trying to think positive about the future but a little hard to do right now. Grieving and moving at the same time and doing it while ill. Never thought my life would feel more like a punishment than a blessing but it is what it is. Don't really care where I live and could care less about belongings anymore, I'd give anything though to have my husband back. Someday I hope we will be rejoined. Until then I wait. 

[MooseMom]

 

You've been through so much, and I hope this new phase of your life will enable to find a modicum of peace.  Getting rid of "stuff" is cleansing, and I'm glad you've found a solution.  I hope your move goes well.  When will that be?

[Simon Dog]

I will have to get a disability lawyer. I dread this.

SS disability lawyers are limited to 25% of the back pay disability capped at $6000, which is a bargain compared to what you would pay in an unregulated market.

[kristina]

Dear PrimeTimer, I am so sorry that you have to go through all this and hopefully the move goes well and gives you new ideas and hope for the future. I send you all my best wishes from Kristina.

[SooMK]

Best wishes PT! You seem so brave to me. I hope you get settled quickly with your brother and his wife and your kitties and are able to find some peace.

[Michael Murphy]

PT my wife is  a cat person and at one time we had 7 cats.  One of our cats was a rescued feral a black and white tuxedo cat.  We had a male Siamese who attacked black cats on sight.  To keep the Siamese alive I took the tuxedo cat in my room.she lived with me for almost 20 years. To give her a change about once a week I would put a halter on her and take her outside on a leash.  She started off very standoffish but over time learned to climb on me in bed for some stroking.  Actually she turned into a great companion.

[UkrainianTracksuit]

Pea Tea, you are such an example of strength and you have made/are making some big moves/choices in such a short amount of time. That is admirable. I hope that in your next update you are in your new space safely and happy. And we can't forget, may your cats be contented too!

[iolaire]

PrimeTimer I hope the move goes well and you get setup with the medical equipment you need at your new home.  The choice to get rid of your stuff is probably a good one and I'll be interested in hearing in six more about what went well with that choice and what you wished you had done differently.  A fresh start has some allure for me but I wonder how much of a shock it is - or not.

[PrimeTimer]

I come on here because I actually get more support from the dialysis family than I do from my own. Things have gone south on me. I truly had one the most terrible weekends. As if I haven't been thru enough...illness (sarcoidosis) and then the loss of my husband. I miss him so much. I cry a lot. But, my own brother now is telling me to stop "moping" and to get off my butt and get back into the business of living. As for moving well, my brother was to come but decided to stay so he could watch his sons football game. Oookay. So instead, he sent my SIL to drive across the country by herself to come help pack me up. Well, I did do some cleaning/packing but she said I could do more. There I was, crying over missing my husband as I went thru his things with oxygen tubing up my nose and reminding her (for the millionth time) that I have Sarcoidosis and it has become physically difficult at times for me. And what did she say? She told me that I was "playing victim'. That hurt. I am sick, stressed AND grieving. I am losing my home and all my belongings. And she tells me I am playing victim and my brother tells me I need to get over the loss of my husband and move on. Really??

Well, one thing led to another and I just could not take the insults and lecturing anymore. I told them I don't need lectures, I don't need snide remarks or even advice. What I do need however, is to be consoled, offered moral support, patience, an understanding and some sort of comforting. I am at my lowest point and this is how "family" treats me. Losing my husband is the most painful and worst thing that has happened to me. I feel as tho I've lost my purpose, my spirit is broken and now I am feeling like I am losing the will to even live. I don't know if my family is acting like this because my husband isn't here to defend me or if they actually just don't "get it". Being sick and grieving and losing everything else almost seems so unreal. But no, I am living the nitemare.

The Salvation Army came....and went. They refused to take my furniture because it "wasn't prepared" and the place had boxes and bags along the walls. Their boss wanted everything cleared in order to move stuff out. I felt there was plenty of room but their boss made the decision. I was so humiliated. My SIL was to help me with that before they arrived and what did she do? She went shopping! Keep in-mind, she's an admitted hoarder and shopaholic. Her timing to get a craving to feed her addiction was bad. So the Salvation Army crew left without taking anything. I will have to do this all over again. Or maybe not. My SIL and I got into it after that. Then my brother got on the phone and literally screamed in my ear. It was awful. Pure hell. I felt like I had been ambushed to be beaten up. And this is my own family that I'm talking about!

So, my SIL left and returned home. My brother fired off some nasty emails to me. They are no longer going to help me with my meds, food or bills. They told me that it was my choice to cause trouble and so now I can just go to a shelter. So that is that. No more "family". That was it. So now I've got to call the shelter and see if they can take me in. I read that if you meet certain criteria they might help you with medical needs and housing and that while limited, they do have kennels for pets. Initially I will have to stay in their main shelter area in a shared bed space with communal showers but if/when housing of some sort becomes available, then I might get to move in. I hope they have volunteers who can come pick me and my cats up. Just taking a suitcase. Might have to abandon my belongings here at the apartment. Feels awful. It's not right but I am just trying to stay alive now. Going to taper down on the Prednisone and some of my other meds immediately since I can't fill prescriptions now. Do I feel abandoned? Yes but as my brother and SIL put it, was my choice. I have been operating under the fog of grief and according to them, it's my fault. Won't be talking to them again. Not ever.

So that is the latest. Sorry to be such a downer. Some people just do not know how tough others have it. You guys do and so do I. But there are people who just don't "get it" and don't experience hardship, illness or grief so don't have an understanding. You do not want to know my thoughts right now.. 

[kristina]

Dear PrimeTimer,

I have just been reading your news and development and it fills me with absolute horror and despair and I do hope you can soon find some urgent help and understanding. What you describe and what is happening to you sounds extremely cruel, heartless and unbelievably callous and we can only hope that there is some light at the end of the tunnel and hopefully it shows itself very soon!

Please take great care and I feel very sorry for you, Kristina.

[SooMK]

I am so sorry. I can't imagine what this must be like, how frightening it is. I'm stunned to think that this has happened to you and that your own family has facilitated it. I'm sure, at some point, these people will experience karma, but that is cold comfort to you now, in your position. I am hoping an answer will come from somewhere. I'm sorry this is such a weak reply to your post.

[PrimeTimer]

kristina and SooMK:  THANK YOU FOR THE SUPPORT.   Having moral support goes a long ways. I'm just flabbergasted and yes, even mortified by my family's actions and words. Especially at a time like this. I suppose if I had just bitten my tongue and kept my mouth shut I wouldn't be going to a shelter.

I am trying to do what I can for myself but between being ill and now, grieving the loss of my husband, I struggle with things and with my thoughts. They call it the "fog of grief". I know I am not "normal" right now, which is why I had hoped that my brother and SIL could see when they got here and then understand I needed their help. Instead, I was told that I am "playing victim" and despite the fact that my husband died, I need to "get off my butt and get back to the business of living" AND...to stop "moping". I know I shouldn't let it but their words hurt beyond what you'd imagine. I broke down and yelled at my SIL to stop berating me. And now look what I've done. Defending myself, at least in this situation, only hurt me. My SIL and brother said that THEY were the ones who were offended. I should have just kept my mouth shut. But I  I never expected them to turn on me like this. And they've cut me off. They told me to go to a shelter. And so that is what I've got to do. No family anymore.

I will try to keep everyone updated. Today is a "Methotrexate" day for me. That is an oral form of chemo, an immunosuppressant of sorts.  I take that med and it makes me feel sick for a couple of days. So I get into bed. It will be the last treatment tho, no more insurance for my meds. Brother cut me off. Hoping the shelter can hook me up with a program for all my medical stuff (meds, doctors, oxygen). If it weren't for my 2 cats, I don't know that I'd want to stay around anymore. I am trying to keep going. Thanks again for your support and being here. Wish I could give you all a hug.

[iolaire]

Sorry PT.

[PrimeTimer]

Well all, my brother had Adult Protective Services pay me a visit today. The social worker told me that the shelter is full and there is no housing available. The wait list has been closed. The city is THAT full here with homeless people. She said that I should apologize to my brother and SIL and have them come pack me up and move in with them or another option, is that my brother can pay for Hospice and I can remove my oxygen and they will help me die. Otherwise, I will have to be on the street.

I emailed my brother asking if he could at least pay for Hospice. I don't know if he will reply. I have to be out of my apartment by the end of the month and either way, I will be gone by then so that no one will have to deal with me anymore. It is as simple as that.

Don't know when/if I will be back on here but again, I want to say that I have appreciated the support I've gotten from you guys. Love you all. Take care.

[PrimeTimer]

Called the Fire Chief where my brother lives. He's going to pay them a little visit to look at their hoarding situation in the house. Yes, the hoarding would be unsafe for me as well as any medical personnel that may ever need to go inside to help me and unsafe for fire fighters. They can be written a citation for it to clean up the house.

[MooseMom]

This is just the most appalling thing I've read for such a long time.  It makes me incredibly angry that one of my fellow Americans is suffering in this way and is getting absolutely no support from the government to whom we pay taxes.  The lack of compassion from a brother is horrifying.  This should not be happening.

In which state are you living?  I'm sorry if you have told us in the past, but I cannot remember.  The social worker from Adult Protective Services should do better.  I'm suspicious of anything in which your brother has had a hand.

This is just not right. 

[PrimeTimer]

MM:    I am in south central Texas. I don't know if this has added to the housing shortage for the homeless or people in poverty but the city has just taken on hundreds of immigrants from the border. Charities are helping them and that's good but I wonder if it's causing the locals who need help to be squeezed out. I don't know. We have a lot of homeless people here and it's sad. And at the end of the month, I will be one of them. Doesn't really matter at this point. I am working with a hospice that might be able to take me in at no charge. They are contacting my doctor to verify my illness and the fact that I would die without the supplemental oxygen. I am okay with this because for one thing, it would be a relatively painless death. And having a plan formed gives me a peace of mind now and actually a bit of relief. I am not suicidal but I am tired. This provides me a comfortable option opposed to the street or living with verbal or even possibly physical abuse. Maybe it's a blessing in disguise because I am quite ill now, maybe it is my time. I am okay with this. It will be alright.

[cassandra]

Dear PT maybe the hospice might give you the bit of respite you really need right now. Maybe you meet people who can lead you in a more positive way. Like you say yourself you are very tired, and you are grieving, and you are angry (well, I would be in your situation) Don’t give up.


Lots of love, strength and luck, Cas

[PrimeTimer]

Dear PT maybe the hospice might give you the bit of respite you really need right now. Maybe you meet people who can lead you in a more positive way. Like you say yourself you are very tired, and you are grieving, and you are angry (well, I would be in your situation) Don’t give up.


Lots of love, strength and luck, Cas

Thank you, cassandra but here in the US, hospice is where you go to die. It's not the same as a hospital. Hospice helps you be comfortable while you die. I would be removing my oxygen and they will help me through the dying process. In my case, without oxygen it would probably only take less than 2 hours. I've gone into full respiratory arrest before because without my supplemental oxygen, my O2 level rapidly drops. So it would be a fairly quick and painless death from Hypoxia.
sorry...to be such a bummer but I have no other options. Please know, I am okay now with this. It is almost like a sense of relief having made the decision and not having to stress anymore. I am tired and look forward now to eternal peace. It is that simple. I am not suicidal, in fact, I am being quite rational. I have a peace of mind now. Just waiting for the hospice to verify some things with my doctor.

On a separate note, only so I don't look completely insane, I have apologized to my brother and SIL for yelling at my SIL for saying I was "playing victim" as I am sick and also grieving the loss of my husband. We were packing and cleaning for my move and my SIL told me I could do more. When I told her I needed a rest she said I was playing victim and well, I got very upset by that. Having Pulmonary Sarcoidosis (with permanent scarring of the lungs) is not easy. I find it physically challenging. And my husband just recently died. So when my SIL said I was "playing victim" I got pretty offended by that. And she left. I have since sent apologies but my brother and SIL say I am not welcomed in their home now. They told me to go to the shelter, only the shelter is full. So hospice was suggested.

Love you!