In 2000 my Mother, Nancy, had to have her left kidney removed and was diagnosed with Metastatic Renal Cell Carcinoma. After her treatments were completed, she was told she was Cancer free. As many of you may know, with it being metastatic it can travel in the bloodstream, land anywhere and lay dormant until it decides to raise its ugly head again.
In August of 2001, she had a stroke while I was home with her. (Thank God I was off work that day). It took the Doctors several days before they could do anything for her because she had taken blood thinners for many years because of blood clots in her legs. They said her blood was so thinned out that it was like water running from a tap. When they finally got it to start clotting, they were able to do an MRI to locate the area and do surgery to get everything taken care of. It was in this MRI that some spots were noticed on different areas of her brain. While they were in there, they took a biopsy and confirmed that it was Cancer. Luckily her care was quick enough that she only had a slight problem with her speech. I worked with her, at the hospital and at home, and in no time you couldn’t even notice it.
To battle the cancer on her brain, the Doctors decided to try Gamma Knife Radiation on just the spots that showed up. I was there with her and it was so hard to see her with that halo on and the scared look in her eyes. She had the treatment and another MRI afterwards to see the results. Everything looked good, the spots had shrunk considerably, so they waited a month and did another session. Again, the halo and that same scared look in her eyes but I kept a smile on my face and told her it’d be ok.
After a couple months, she and I were coming back from one of her Doctor appointments and she had been saying her left leg hurt and that it was extremely hard for her to put any pressure on it. She still had her walker and was using it to help her to walk. She had told the Doc about this and he sent her for an x-ray but couldn’t see anything, so we went home. While going into the house, she went to step up with her left leg and when she did, I heard this loud crack, a sound I will never forget the sound of. My Dad had come out to help her get in the house and I’m glad he was there as he had to catch her and ease her back in the wheelchair. He and I looked at each other and instantly knew her leg broke. I ran inside and called the ambulance and they took her down to the hospital. The x-ray of that leg showed that both bones in her lower leg broke. One break was clean but the other was jagged and cloudy around the break. The cancer was starting to move into her bones. They had to put in a steel rod in her leg, but she was never able to walk on that leg anymore.
In February of 2002, she had another MRI and not only had the original spots come back, but there were more detected so in March she had another Gamma Knife treatment. This time it didn’t work so they wanted to try again. She endured these treatments up until June. Each time, there’d be more spots and it became clear that the Gamma Knife wasn’t working anymore. The cancer was now in her Brain, her bones, and lymph nodes. They started Chemo right away but by August she said no more as even the chemo wasn’t working as the spots kept getting larger. During this I cared for her daily. My Dad, Sister, and myself took shifts. I was there in the morning, then came the hospice nurse, my sister would come in throughout the day, my niece would be there for a couple hours, and then I’d be there in the evenings. There were so many nights I cried myself to sleep seeing her this way, in so much pain and having oxygen with her everywhere she went in the house. She told me one night, “I want to die now. I’m tired of living like this.”
In September of 2002, she passed away and was no longer in pain and had to live like that. It’s almost 8 years now and I still miss her so much. My Father passed away in February of this year and a month later, my cat of 20 years, Scamper, passed away as I held her.
I have since remarried and now my husband is enduring his own battle. He has been diagnosed with Crohn’s Disease, Diabetes, and Fibromyalgia. There are days I have to help him get out of bed in the morning. I, again, am a caregiver. He has filed for SSI but the courts are so backed up that it has been 2 years waiting for a hearing. Bills are backing up as I can’t work, I have to be here for him, we are losing our house and I am so stressed out from doing everything and trying to get him to Dr. appointments and house chores. His problem, well – one of them anyway, is that after a while his body builds up an immunity to the medicine that they stop working and we start all over again with another medicine.
It has been since this that I’ve been diagnosed with Diabetes and High Blood Pressure. I know it has to be stress related as I never had any problems before now. My Dr. asked me if anything was going on at home that would cause stress on me. I laughed and started telling him everything and all he could do is sit there with his jaw dropped. He gave me some medication to help with the stress, but it makes me sleepy and I sleep so soundly, I’m afraid to take it unless I know I don’t have do anything the next day. (Which is very rare.) I try to keep an upbeat mood and attitude for my husband, but there are days that it is very hard to do. I pray but it doesn’t seem like any kind of answer is coming anytime soon. I know I’ve got to take care of myself, but it’s hard to do. By the end of the day, I’m so exhausted but I have keep going.
I apologize for the length of this posting but I had to get it out.
Patty R.
Hi Everyone,
I wanted to give y’all an update as to what is going on here. My husband, Chris, is still trying to get approved for SSD. He got denied his second time and decided to try again. This time I think, and hope, it will get approved. He had a CT and a MRI done a few months ago and it showed a bulging disc at the C2-C3 vertebrae and one at the C6-C7 vertebrae along with Stenosis of the spine. The one at the C2-C3 location is a bone fragment that is, at the biggest spot, narrowing his spinal canal to about half it’s width. The Doctor said he could remove it but it would be a “touchy” surgery given the location. He also said that he could not guarantee that it would get him back to 100% and the possibility that it would do nothing at all was also there. So, after discussing the options and the negatives outweighing the positives, Chris has decided to hold off on the surgery – for now. I am getting a copy of both tests, to keep here at home, just in case something happens and we need to show them to someone. A few of his friends have told him that having Stenosis in his spine will get his SSD case approved. I hope so!!! It’s been a tough winter with trying to keep all the utilities paid. Luckily some local charities have helped us, but even they are getting tapped out. We are signed up for housing help so if they find us something we will have that to go to if the SSD doesn’t come through in time to save the house.
As for myself, I’m hanging in there. There are days that I don’t even want to get out of bed to face the day. I try to keep it from Chris how much this is effecting me but he sees in and apologizes. I tell him that it is not his fault and tell him we and I will be fine and smile. I try to get out of the house for a walk, now that the weather has gotten warmer, and that helps but I still have my moments. There are times that I feel as I am losing it, but not sure if I am as I don’t know what it contains. CHAR, I apologize for not getting back to you when you emailed me a month or so ago, our cable and Internet had been turned off because we didn’t have the money for the bill. I had access to my email through our church but I didn’t stay on there long as I didn’t want to overdo it there. It’s hard for me as we were raised to where you didn’t talk about what was going on and how you felt, you just got up and did what had to be done and that was it. Chris said I should talk to a counselor but I don’t know if I could being raised the way I was. So, I pray, laugh at the cats when they play, and keep on keeping on.
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Dearest Patty,
I am so sorry to read of your current situation. SSD from my experience is very difficult to acquire, but you already know that. Rich was turned down once, and at this point, we have not reapplied. His doctors say not to give up, but hire an attorney… Well, now as you know they do not come without a price tag, so that is why was have dropped the ball, for the time being. But, I do believe SSD have certain “key” words they look for an their paperwork, I need to do some research on that. If we do decide to bring in an attorney, I will be happy to share that information with you here, on the keywords, etc, when reapplying. The entire process seems so unfair, our denial stated that Rich should be able to work full time, sitting at a desk, by this July (that was last year in September when we applied, not sure what they thought he could do in the meantime to be able to live and pay bills, etc). Imagine, a man with absolutely no experience as an office worker , and one that will miss work at least twice a week, for doctors appointments, not to mention infections, etc, is going to be able to get a job, sitting at a desk, NOT
It infuriates me that you have to go thru all of this too, and now live with the fear of losing your home. Please try to find something that helps you relax and will makes you smile and forget even if it is only for a short while, walking is great, maybe a hobby of sorts, that can be done even if the weather is bad. I will be thinking of you and Chris, and never feel you have to apologize to me, for anthing…. wellll, now that is unless you take the last cookie in the jar, as I have never met a cookie I didn’t love.
~Char
ps… I understand completely about being raised not to talk about your troubles, to anyone, that’s why DLH is such a great outlet for so many of us.
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Hi Patty and Char;
SSD has been denying almost everyone for the past three years since they have no money either. I do not know if it differs from state to state, however attorney’s in my state take a percentage of the award for taking a disability case. It should only be a portion of “back pay/disability” from the client’s appeal–NOT a percentage of future payments. Just an FYI since most people who have not worked because of health reasons do not have money for a retainer:(
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Lynn,
Thank you for this invaluable information, it will definitely come in handy. Your vast experience is very much need and appreciated for so many of us at DLH.
~Char
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Patty, I sat for a few days trying to write something helpful, which was difficult because you have been doing such a good job of managing what can be managed – I just couldn’t think of any new ideas for you to help alleviate some the stress you’re under. Eventually I ended up writing something I hoped would help give you a different perspective for a few minutes; a respite from all you’re dealing with. It turned into a very long piece, and rather than post it here and risk sounding like Pollyanna (wow, that’s in my spell checker!!) I submitted it as a post called “Gratitude”. If it shifts your focus for two minutes it will have served it’s purpose. I’m sorry for all you’re going through and want you to know that I lost “it” a number of times during our journey with cancer, and then finally, and permanently, after my husband Dan died. I don’t miss “it”. ~ Jean
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Patty – Thanks for sharing your story. This is a great place to come for support and for me it also makes me feel so humble. We all have gone or are going through care giving experiences and those experiences affect us all but each of us experiences it differently. Your endurance is wearing you down it sounds like. As someone said above you must take care of you or the pile could get bigger. I am also not in a position to take a “fancy vacation” but I try to grab moments when I can. So glad you have found this site. My Grandma and Mom both have always used some unusual sayings over the years. Since you seem to be a cat lover I’ll close with one of Grandma’s orders when she was trying to cheer you on: “Chin up, tail over the dashboard” I haven’t figured out the tail part yet. LOL. Hang in there and keep us posted.
Marietta
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Hi Patty. I don’t know that I have anything new to add to what has already been shared with you. However, I wanted to take just a minute to let you know that you are most assuredly in my thoughts and prayers, and to encourage you to “hang in there”. Peace and love, DeeDee
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Hey Y’all,
Hubby had his second meeting with the SSI bunch on the 18th and he said things went well. There were some questions raised about his working when he said he couldn’t. The judge was sent an anonomous (sp?) letter saying that hubby was working. We had hubby’s brother go with him as, other than hair color, they look alike. I even did a double take the first time I saw both of them together. So hopefully that took care of that. The judge did mention getting a letter from our Senator so they did follow thru on getting in touch with SSI. So now we wait to hear the results. I only hope and pray that it comes thru quickly as we have until Sept. 13th before our home is sold.
Everything went well with my surgery and I am on the mend, ever so slowly though. I thought about taking some of Dan’s CDs with me, but didn’t want to take a chance on them possibly going missing. I kinda didn’t want to leave the hospital when the day came, while I was there I didn’t have to deal with what is waiting here at home. I feel I should start packing up things and make arrangements as to where to store them but is hard for me as I still can’t lift anything. I bring it up to my husband and he answers “I know” but does nothing about it. I’m at wits end and feel as I’m about to lose it. I know I can’t cause I’m the only one that is concerned.
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Hi Patty, That is fantastic news about SSI (is that social security disability?) and I am sure that it will get approved. What about asking your Senator (sounds like that office is going to work for you) to help you get in touch with the people that are taking your house to hold off until everything gets reorganized. I would be shocked to learn that between the Judge, the Senator and the people involved with your house that they would not do anything to help you. With the right persons signature on letters, I am certain that something will happen. There are people out there that will stand up for you-you just have to find them. Please keep us posted.
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Just wanted to touch base with everyone and to Thank You for all the positive and uplifting messages. I did get in touch with our elected officials about helping out. One did get in touch with us and is sending a letter to the local SS office, expressing his interest in my husband’s case. How much that will help, we will have to see. Hubby’s next SS hearing is on the 18th. so all we can do is wait and see what happens. We did receive a public notice of auction for our home which if anything can be done it has to be before mid-September. We did send a copy of that to the Representative who contacted us and a copy has been given to the attorney.
In the meantime, I will be going into the hospital on the 10th to have a hysterectomy. I’m hoping that will help end some of my problems, hot flashes included. I was hoping to go home to Peoria for Dan’s Memorial weekend, but this put a kabosh on that. Thankfully I have some dear friends there that will be taking pictures and sending me the newspapers from those days. Sorry I can’t be there, Jean. I so wanted to be. Dan continues to be my favorite of all time and I miss hearing his voice.
Y’all take care and I’ll check back in a few days or so. God Bless each of you.
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Hi Patty, I had been wondering how things were going for you
Glad to hear that a local Congressman may be able to assist you…hopefully everything will fall into place re: medical coverage. I’ll be thinking of you as you have your hysterectomy today. Will send a little prayer upward 
I hope things go well w/your recovery and that you’ll feel better in the long run!! Take good care, Patty!
~Ann
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Patty, By the time you read this I am praying things have gotten better. We all are thinking of you and sending best wishes for a speedy recovery.
I hope to be in Peoria, and would be happy to send you some pictures.
When you are feeling up to it, this is my eaddress: Char@dontloseheart.org, just let me know your email and we can start the ball rolling.
In the meantime, just concentrate on getting you feeling better. You need time to heal, and relax, I know that sounds impossible, but maybe the time in the hospital will help you do just that. How about bringing some of Dan’s music to the hospital with you. And lastly, just trying to look at this situation in a different light, might help you be more at peace, this time after surgery, is time for you to renew. I know its hard, but Pat we are here for you. Please let us know how you are progressing.
With many blessing for you today.
~Char
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Patty, I am so sorry for all you are going through and have gone through and the pain you are feeling. My heart goes out to you.
Jean made a great suggestion about getting in touch with the hospital social worker. They are there to be a resource and a support for you. They also have a link to many agencies and community groups. Use them!
Again from my own experience, I encourage you to do as Melisa suggested and contact an elected state official. They have an office of people who are there to help cut through red tape. In in my case it was a US senator that made all the difference for me. After my father died my mother qualified for social security at an earlier age due to her disability. I then followed every direction for all the paperwork that was required The final paperwork kept getting rejected . The SS office would not budge on the issue of my mother’s official birth certificate. My mother grew up in Germany during the war and her documents were destroyed. We were in a catch 22. The SS office wouldn’t budge. I finally called my senator’s office and they ran with the mission. Come to find out there was a law on the books that exempted US citizens who emigrated from Germany that were born after a certain year from having to have an official birth certificate for identification. My senator, Tom Lantos, wrote me to inform me of the law after he contacted the SS office and had my mother’s application approved.. Oh Happy Day!
It may take time to get the answers you need, so please try and reach out and ask for help. Many people on this blog have written with wisdom about how important it is for you to try and take care of yourself.
Just writing about how you are feeling is a positive step. Joyce
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First off, I want to Thank each of you for your kind words and thoughts, they are a great help to me. Knowing I’m not alone in this means so much. Oh, a little bit of possible help for others. For nausea, try Lipton’s Ginger Twist tea. My Mom’s family Doc told us of this when she would have treatments and have an upset stomach and trouble sleeping. She’d have a cup of this before bed and fall asleep instantly.
We got a chance to get out for a few hours today. Our church had a cookout at a local sportsman club our Pastor belongs to. My husband and many others got to do some fishing, too. It was great to go have fun and forget. Now hubby is sleeping it off and I’m just relaxing, having some “me” time.
Melisa – we live in Portage, PA. I thank you for the info about
contacting our Congressmen and Senators. I never thought of going to them. After I get through here, I’m going to start looking into whom I can contact.
Susan – We do have a church that we attend regularly and they have been wonderful in helping. They have helped us pay some of our bills. Times here are tough, even for the churchs in the area and all over. People are not able to give as much as they used to with so many out of work. I’m a proud person, my brother, sister, and I were raised this way so it’s hard for me to ask for help. If it hadn’t been for our church family I wouldn’t have been able to get back to Illinois for my father’s funeral. We contacted our Pastor, hoping they could help at least myself to get back, but they spread the word throughout the congregation and raised $600, enough for us to rent a car and both my husband and I were able to go back. I do belong to the Women’s Group at church and look forward to out once a month meetings so I can get out and forget things, if only for an hour.
Jean – Thank you for the info on contacting the Hospital’s Social Worker. I will look into that. We do have a Social Worker at our County’s Assistance Office and they help where they can. My husband talked to them last week and asked about Housing Assistance, because of our situation, and the person laughed and said “you and many others” and that there is a waiting list we’d be put on. So, we’ll see what comes of it. It’s all we can do. I just keep chuggin’ along.
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Hi Patty, Just dropping in to let you know we are thinking of you, and hoping things are going along easier for you. You are never alone here, we are here for you know matter what, usually 24-7!!!!
~Char
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Dear Patty; my heart goes out to you in this difficult time. Do you have trusted friends or family members close to you? I would encourage you to reach out to them, let them know you are struggling. Too often when our stress level is overwhelming, we tend to shut down and isolate ourselves. I have found one of the most difficult things for a Caregiver is to admit they also need support! All of us need to remember “being superhuman” is not in the definition of Care giving:)
Contacting a medical social worker to visit and complete a needs assessment is a great idea! I noticed you worked with hospice with your Mother. If you had an emotional connection to the hospice social worker or nurse, I would suggest contacting them too. Between your Doctor, hospital, and the previous hospice agency, there should be some good idea about services and resources in your area.
I hope you continue to post (complain, bitch, moan, etc.) on DLH! My professional experience shows being able to ‘vent’ and let it all out will help your high blood pressure! Take care of yourself and we hope to see some new posts when you have a chance!
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Hi Patty, your story is one that made my eyes go wide open. I am so sorry for your losses. Emotional pain is so deep. I truly wish there were something I could do. What I can say that we did when my signficant other was so sick, I had to quit my job because I couldn’t talk for crying which meant neither of us had an income and I knew it would take 4 to 6 months to get disability approved for him, I called, faxed and emailed our Congressman and Senators office to ask for immediate approval of disability due to his situation. One girl in our congressman’s office took the ball and ran with it (it takes finding that one person) and she personally assisted us on the Congressman’s behalf through the maze of the social security process. Patty, it will take some energy for you to find your State Senator and Congressman contact information. I will be happy to do some legwork for you online if I knew what State your lived in. You have weathered some major storms. You are not alone. Keep writing. We are here for you. Melisa
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I sent emails to all our local and state officials this week, asking if there was anything they could do to help. We’ve heard from one local Representative’s office. They told us that with Social Security it is a Federal issue, that they couldn’t do anything. So, now we wait to see what kind of response we get from our States Representative and Senator. Hopefully it is soon, the property is now on the auction list. Guess I should start packing up stuff, just in case.
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Hi Patty,
Boy, you’ve really had a load on your hands. I can’t believe your husband applied/filed for SSI 2 years ago, and you STILL haven’t heard anything!! That’s just plain nuts. Is there any way you can get in touch w/your U.S. Senator’s and/or U.S. Representative’s office?? If you’ve already been told this is a Federal issue, then I would get on the stick and contact the people in D.C., whom you’ve elected to look out for you. Don’t hesitate to vent your anger and frustration…it sounds like you have every reason to be fed up with the system as it is. SOMEONE has to be able to help you and your husband.
I’m assuming you have SSI’s toll free phone #, but if not, it is 1-800-772-1213. Click on the link below to find the names, phone #’s, and e-mail addresses of your U.S. Senators & Representatives. If you’re in dire straits-and it sounds like you are-you need to get in touch with someone at that level ASAP.
http://www.contactingthecongress.org/
Finally, on a different topic, have you been back to the doctor since you backed off taking the medication for stress? He/She should know what side effects you are having and that you are not taking it as prescribed. Also, what is the doctor doing for the high blood pressure and diabetes? I’m assuming you must be taking something to treat these conditions, because if left untreated, you could be putting yourself at great risk. We don’t want you to have to deal with any more health issues, Patty…please make sure you are receiving appropriate care from your doctor
I’m so sorry, Patty, that you’ve had to endure years of difficult caregiving with your mother’s cancer-and then the more recent death of your father and beloved cat. Sometimes life just bites, doesn’t it?!!
You’ve experienced a tremendous amt. of grief, and I’m so sorry that you’ve had to endure so much sadness and stress.
Please do let us know if we can help you further with follow-up on the SSI issue. Know that we are all here to help and that we truly care about you and your husband…
Much love,
Ann
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Me again, Patty-Ann
I just had a thought that maybe your doctor is also having you change some of your eating habits to help control the diabetes and hypertention (??) Sometimes, that alone can be very helpful. Whatever the situation, if you haven’t had your blood pressure and/or glucose level checked recently, I would touch base w/your physician 
Take good care,
Ann
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Patty, I do have shed tears for your load you carry. It is more than anything I could imagine. Please know I am sending prayers, love and hugs your way. By all means, please follow Jean’s advice. There are resources out there for you, might I also suggest a medical social worker who will come in and assess your situation and also give your resources. I work for a home health/physical therapy agency and see this all the time. Please don’t give up hope. And we are all here for you any time at all. I have done my share of yelling and crying here. And I get such strength and comfort from everyone here. Also, another resource could possibly be your church community if you are members of one. I know being a catholic, we have the diocese resources for us. There is always help, but sometimes you just have to search and search for it. Please keep us posted and please take care of you. I have learned that from everyone here. Even if it is for just 15 minutes; make it your 15 minutes. Blessings, Susan
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Patty, I am terribly sorry for the loss of your mom, dad and beloved Scamper. You have way to much to handle yourself, and as Jean suggested you might want to call a social worker. It’s a wonderful idea, and they provide a very much needed service. My husband has several health issues and my present situation seems to be similar to yours. We live with my mom, as I am her caregiver also, otherwise I have my doubts if we would have been able to keep our house, as my husband has not been able to work for 3 years. Welcome, Patty we are here for you. Please take care of yourself.
~Char
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Dear Patty, I cried for your poor mother, and for you and your father, having to hear her bones break like that. The terrible things we caregivers witness are only made worse because it’s happening to someone we love and we’re helpless to stop it. You lost your mother, father, and pet, and each one of those experiences provided their own traumas. The loss of your father and cat are still fresh, so you are probably experiencing some post traumatic stress in addition to the stress of now caring for your husband and dealing with all the financial issues. That’s a hell of a lot to be carrying on two little shoulders, even for someone as strong as you obviously are. You could use some help. Might I suggest you call your doctor’s office and get the name and phone number of your hospital’s social worker? Their job is to assess your situation and help you get what you need. We want you to get well, and we don’t want you to lose your house. Our social worker was so caring and supportive. And, you don’t ever have to apologize for anything here – you can bitch, whine, moan, complain, dump, and yell as much as you want to – we’ll be here for you. ~ Jean
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