Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 Hi Jan, Did you notice under the " dizziness and balance " page there is another link " syncope " ? Hi Marcia, Oh! I thought I sent the syncope link, I did notice it when I was sending the links. It was like a catch 22 whether to keep my husband on Sinemet or not. He did well with it, and it slowed the hallucinations and kept the tremors from happening. In the ER if they did not give him Sinemet on time, he had a slight hand tremor. I always had to tell them they needed to give him Sinemet, because he would be so long in ER, he would miss the time that it was to be given to him at the nursing home. Marcia, the care does get expensive when there is a long life span with the disease. All LBD LOs are different in their span of life. The LBD brochure http://www.lbda.org/node/199 http://lbda.org/sites/default/files/booklet-for-newly-diagnosed-patients2.pdf states that the duration is possible to be anywhere from 2 to 20 years. The brochure states that the disease usually progresses faster than Alzheimer's or Parkinson's with an average duration of 5 to 7 years. Depending on several factors, including the person's overall health, age, and severity of symptoms. Other than my husband being combative and delusional as a reason for putting him in a nursing home, it was also the expense, I could not afford a 24/7 caregiver. A spouse can put a spouse in a nursing home using Medicaid or as it is known in California, MediCal. It was $7,000 a month to stay at the nursing home, (and that was one of the cheaper ones) but Medicaid paid for the greater part, I only had to pay about $1,200.00 a month. Cheaper than what I paid a month for the caregiver 5 days a week for 9 hours while I was at work. Unlike a child/parent, a Spouse/Spouse does not have to sell the house to qualify for Medicaid. The spouse can remain in the house until their death. I could not remain in the house, because my husband lived there first and put the house in a Trust to his kids, so upon his death they sold the house, and I had to move, but that is not the norm. I went to an Elder Care Attorney to figure out how I could have my husband qualify for Medicaid and he did all the work. I did not have to take 3 years to spend down, as I have heard. When things are put into a Trust or investments into Annuities, it breaks it down right away. My husband still had a little over the limit of what Medicaid would qualify him for and that is the $1,200.00 I spent down on monthly to the Nursing Home. My husband qualified quickly, because the attorney itemized everything already. I was told not to have the Social Workers at Medicaid do the itemizing, because they do not know all the loopholes and things the Elder Care Attorney knows. It costs to see the Elder Care Attorney, so I first put my name on a list at a Senior Center to see a Pro Bono (Free) Elder Care Attorney, they are usually retired attorneys or just starting out. I got all my questions out of the way for free, so it didn't take up all my time with questions when I actually went to a paid Elder Care Attorney to have the work done. Medicaid saved me from all the expense it would have taken to keep my husband in care. Medicaid does have a " Recovery Act " and wants assets for pay back, such as money from the sale of the house, estate furniture, one car etc. to help cover for what they paid out after the remaining spouse dies, but until that day they allow the spouse to live in the house and enjoy their belongings. My having to move out of the house is not the norm, but since the house was in a Trust to my husband's kids, I had to. My name was not on the house, and California Law is that the spouse does not get the house if other arrangements were made with the one that has their name on the house. When my husband's kids sold the house, they had to pay " The Recovery Act " from the house sale, estate furniture sale, and a sold car. I am now done with Medicaid and " The Recovery Act. " I am moving forward with my life. I am stating all this because if it gets down to running out of money before the LO passes, it is another direction to go and the money has already been spent down in the LO's care, so he/she would qualify with Medicaid already. Of course, you want to keep your LO at home as long as possible. I have heard some rummor that Medicaid may start paying to keep a LO in their house. I am not sure if that has started anywhere, but it would be helpful. Medicaid and Medicare are different benefits as to what they supply to the patient. Thank you for your kind words. Jan Colello You are so knowledgeable! I guess it's something you'd rather not be knowledgeable about, but thank-you for all the info. I never knew such a machine existed. I opened each link and read what I thought pertained to LBD caused orthostatic hypotension. Did you notice under the " dizziness and balance " page there is another link " syncope " ? On this page is says that several drugs cause an extreme risk for sudden fainting. L-dopa (Sinemet) is listed as one of the four drugs. God bless you Jan for all you did for your husband. I had no idea LBD could last for so many years. It seems cruel enough getting this horrible disease so young and then to have it last so long. How do people afford the care for so many years? My mom does not have enough money to last that long. I wish you comfort during the next few months. I'm sure Jim is thanking you from above for all you did and wishing you happiness in your life now. Thank you. Marcia B. _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Janet Colello Sent: Monday, December 05, 2011 7:25 PM To: LBDcaregivers Subject: Re: Re: I am not sure if the photo turned out of the Oxygen Concentrator Machine, so here is another attempt. The last photo at the bottom on the far right of the page is similar to the one that Jim had. Photo of Oxygen Concentrator Machine: http://www.oxygenconcentratorstore.com/portable/oxlife-freedom Jim had one similar to this. It just made him more comfortable, and he had used it when needed for the last several years when he fainted almost monthly due to Jim had one similar to this. It just made him more comfortable, and he had used it when needed for the last several years when he fainted almost monthly due to ________________________________ From: Janet Colello <janetcolello@... <mailto:janetcolello%40yahoo.com> > To: " LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > Sent: Monday, December 5, 2011 2:26 PM Subject: Re: Re: Hi Marcia, Marcia said: A question for you Jan. From your e-mail on the stages, my mom is in the next to last stage. She's going downhill rapidly. Is the use of an Oxygen Machine with a Cannula (not sure what that is) OK if they have a living will that states they don't want any life support? I imagine it just helps them breathe better even though they're dying? Jan's answer: Some equipement for oxygen is an oxygen tank with a rubber mask piece that places over the nose, my husband at first did not have an oxygen tank, but an Oxygen Concentrator Machine with a nose piece, called a Cannula, that only goes into the nose, but does not cover the nose, like the mask. An Oxygen Concentrator Machine makes oxygen out of the surrounding air taken into it. It is not a tank filled with Oxygen. It is good for comfort, and allows them air instead of suffocation, it is not a life support. Jim had a Directive made that stated he did not want life supports. The doctor also gave permission for an oxygen concentrator to be delivered to the house when Jim came home for visits from the nursing home. I bought my own oxymeter to check Jim's oxygen levels and pulse at home. At the end with the oxygen, Jim would stop breathing, so it is not a life support. A Ventilator would be a life support in breathing, not an oxygen machine. Photos of a Cannula: http://www.superstock.com/stock-photography/Nasal+cannula Photo of Oxygen Concentrator Machine: http://www.oxygenconcentratorstore.com/portable/oxlife-freedom Jim had one similar to this. It just made him more comfortable, and he had used it when needed for the last several years when he fainted almost monthly due to Orthostatic Hypotension: http://www.dizziness-and-balance.com/disorders/medical/orthostatic.html Syncope: http://www.dizziness-and-balance.com/disorders/medical/syncope.htm Photo of oxygen nose mask: http://www.mountainside-medical.com/products/Adult-Oxygen-Mask-with-7-foot-t ubing.html Hospice used this at the end with an Oxygen Tank. Photo of Oxygen Tank: http://www.ozoneservices.com/products/OLO/tank.htm Because of Jim's Orthostatic Hypotension, I bought an oxymeter online: http://www.semedicalsupply.com/Pulse-Oximeters-Pulse-Ox-Fingertip-Oximeter-s /48.htm?gclid=CLCNxPj266wCFYUZQgodmA9QKg to read his oxygen level and pulse and I knew when he needed to have oxygen. Marcia, I hope I answered some questions for you. Jan Colello, East Bay, San Francisco Bay Area, CA Husband, Jim, clinically dx w/PDD/LBD by neurologist Oct. 2003 Deceased, January 2011 Dear and Jan, My heart is hurting for both of you. Death is such a hard process to endure. You feel so helpless wanting to do something to end their suffering. But I do believe what you said Jan, that those actively in the dying process are way more at peace than those of us watching it. Hospice talks a lot about that in the pamphlets they give you when they arrive. A question for you Jan. From your e-mail on the stages, my mom is in the next to last stage. She's going downhill rapidly. Is the use of an Oxygen Machine with a Cannula (not sure what that is) OK if they have a living will that states they don't want any life support? I imagine it just helps them breathe better even though they're dying? Wishing you peace and strength LInda as you go through this difficult time. Marcia B. Daughter of Marjorie, age 82, dx May 2011, currently in dementia care _____ From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Janet Colello Sent: Monday, December 05, 2011 11:35 AM To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> Subject: Re: Re: So sorry to hear this . It's very hard for us to see, but they are at peace in the death process. Hospice told me 4 days before my husband's death that he would be gone the next day and he was still clinging to life the next day and he made it through, they called the priest to do the last rites. The next day also he made it through. I slept in his room next to him at the nursing home for 3 nights and talked to him. I did all the talking. The priest came again and did last rites for the second time and this time brought another priest. It was my birthday the next day and I prayed he wouldn't die on my birthday. I am sure at that point he didn't know it was my birthday, but by the Grace of God he made it to the next morning and died. I will not know, but I think maybe Hospice helped him along. Jim was clinging to life with just an Oxygen Concentrator Machine with a Cannula and the Hospice Nurse said she was going to help him, and got an oxygen tank with a mask over his nose and placed it on him and he died soon after she placed it on him. I don't know if it was oxygen in that tank or something to help him. He didn't want to die and was clinging. His breathing was very shallow and sometimes he would stop breathing and start again when he was on the cannula. It was very hard to see. I will pray for mercy for your Loved One, he has been clinging for a long while. ________________________________ From: Hanley <hanleylin@... <mailto:hanleylin%40aol.com> <mailto:hanleylin%40aol.com> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> Sent: Monday, December 5, 2011 4:23 AM Subject: Re: ? For Judy Ask the hospice nurse - ours said it will days, maybe a week. She said that on November 1st. Now he is unconscious and not eating and in fetal position - not communicative. I pray for mercy because he is stuck in a place between life and death - not fully in one place or another. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.