Things are deteriorating fast. Last Thurs. we went to a casino about 2 hours from home. DH needed to get out of the house and was excited to go. Our grown son went along as John needs bathroom supervision and help getting back and forth. We were there for about 3 hours and he got antsy and wanted to leave. Son took him to the restroom one more time befor the drive home. They were gone long enough for me to get concerned and sure enough I see them comming with John in a wheelchair. We went outside while the paramedics talked to him. He came around quickly, knew where he was, who we were and what happened to him. He passed out in a stall and was slummped on the floor. The paramedics felt comfortable releasing him so we left. We drove to a resturant about a mile away as we all needed to eat and regroup. While there John suddenly vomited blood. An ambulance came and took him to a local hospital. The doctor there determined he was bleeding internally (that damn coumadin) and needed a GI scope. During the scope he vomited a large amount of food and aspirated it into his lungs. He had to be bagged to keep breathing. The docotor took my hand and very gentley told me John was going to ICU and was in guarded condition. The staff there was wonderful and understood our special relationship. They allowed me to stay with him for 2 days. At the end of the 4 day stay the Dr.s and nurses thanked me for my help! He went to a step down unit for 3 days and then needed rehab. The 4 hour roundtrip drive was killing me so we tried to place him here near home. My 3 choices were not available so I settled for a nursing home I am not familar with just to get him close to home. Now the dilemma...he is doing very well physically but we all know what hospitalization does to our LO's. His MME score was 15. He is confused, walks into other patients rooms, wants to leave, can't use the phone or call a nurse. His care isn't the best but then he is there for rehab not long term. I have an appointment with the socialworker on Monday to discuss applying for medicaid and transistioning him to long term care. It WON'T be there. Thankfully we have been spared the rage and aggression so many of you deal with. John is now the model for smiley face stickers. The problem is the medical emergencies. They are commimg closer together and are more serious each time. I live in fear that something will happen at home and I won't be able to get help in time. I've read the recent posts about placing LOs before they become difficult and hard to place. Is this our time? If I bring him home will I have passed up the opportunity to ease him into long term care? How will he react? How will I react? I know no one can answer these questions for me but I take great strength in hearing from all of you when I'm in crisis and I am in crisis. cs
would stopping the comadin make the emergencies of that sort less likely? Why is he still taking coumadin? DOn't mean to sound harsh. But think through everything carefully... What is help in time FOR?
I know, and I just came back after fixing my husband's breakfast to try to amend and make what I said less harsh. It sounds like he was fairly functional - mine hasn't used a telephone in two years! Could he play the slots? I don't think my husband could... How difficult was he to deal with at home? Do you have all the ducks in a row for when you do go onto medicaid? I guess what I'm saying is that I don't think that at this point you should be rushed into things by the HOSPITAL. And my reaction is because, as I've said here, I was getting exactly the same message last August from people in the hospital, and I refused to accept their judgment. BUT: my husband had had a TIA (I think that's what it was) and didn't get knocked out. So mentally he wasn't damaged much except be being put on a high dose of seroquel.
Can you evaluate how mentally he is doing? Was his MME at 15 just now, after all the trauma, or before he went in? How does he seem to you, as far as ability is?
Wow cs-sounds like you have the reverse problem that most of us have. briegull gave good advice. Take your time to evaluate your husband's mental status. Seems like his physical problems need the most attention for now. If you decide that your husband will not be aware of where he is think of your own convenience first. Pick a facility that will be easy for you to get to.
cs - I brought to the top the discussion - criteria for placement. The first post lists criteria to look for. If it is not at the top when you come back to read, the title is - "Does Anyone else see themselves here/placement criteria." I hope this will be of some help to you.
Briegull Never feel you have to pick your words with me. I appreciate a straight shooter. No hubby can't play the slots. He used to be so sharp at video poker but now only presses the buttons when I tell him to. He has a long history of heart disease. Heart attack, by-pass, valve replacement, implanted defibulator,another small heart attack and a slight stroke all making coumadin an evil necessity. In our comfy home enviorment he is ok, it's when we are out in public that his condition becomes so glaring. He has an overwhelming need for food and sometimes he is hypersexual. He has trouble dressing and is most times incontinent. He showers okay with strong prompting from me. He has no interests or activities. Mostly looks at TV but dosen't follow the programs. However he knows everyone. As I've said in past posts he dosen't know if he needs to pee or pour a cup of coffee. As to medicaid...it will create a difficult financial situation for me. I quit my job 3 weeks ago because daycare wasn't working out. Our condo has been on the market for 4 months without any offers. I had hope to sell and find an affordable apt. before things came to a head. I feel I need to make a choice. Keep him happy or keep him safe. Family Dr. says it's time as he needs round the clock supervision and medical attention. As to his MME, he has had it several times but I didn't know about the scoring until now. I believe it has been about the same for sometime now because I've been there when it was given. The first time his sentence was How are you? The next two times it was I love my wife. Just tears me up. Anyway, big decisions comming up. Keep posting to me. I appreciate hearing from you. cs
I'm so glad I didn't offend you. I don't know maybe it might be best to hang onto the condo - have you talked to the eldercare atty? Because as spouse you'd be able to hang onto it but I don't know about having enough income for an apartment; if you sold it, half the money would go to him, then what would you live on?
I think you're right about the choice: keep him happy or keep him safe. Which do you want it to be? If you went back to work after he was placed, would that affect medicaid? I'm sorry, I don't know where you are or how old you are.. the doctor says FTD??
Is your son any help in talking this over?
I keep looking back to my own life "before" - I travelled, mostly for my own amusement. I'm afraid I often put happiness above safety!!
CS so sorry you have had such a downturn in DH health. it sounds quite serious and and could be an ongoing issue with his previous health concerns. i hate to say this but my gut feeling is its time for him to have the 24hr care the dr is recommending. you may have more crises at home -if you place him and he gets much better after a while you could decide to bring him back home?? just a thought, i am sorry but sometimes we know our own feelings must take the back burner and we have to do whats best for them even if we arent prepared emotionally. its a catch 22 on blood thinners for stroke or not on thinners and increases the risk. i hope things settle down and you find the answers you need. divvi
Medicaid laws differ from state to state. Here in Illinois, you could keep $120,000 of assets easily turned to cash, but you could keep the condo. It really might be better to keep it. Briegull's right. Talk to a lawyer. You can probably find you state's laws on Spousal Impoverishment on line.
CS I agree with divvi about placement and it may be temporary but it might be permnant and maybe you could go back to work if you want too. With all the heart problems that sounds like a very important issue with many emergency situations. My Mom was on cummadin and she became anemic and the Dr. removed the cummadin and said she should never have it again. She lived 2 years after that.
Good Luck and we all support whichever decision you might make. But, I would try and place him close to your home if you decide on that option. I am like briegull, mine could never go someplace in public 2 hours, do the 2 hour drive, play the slots even with help or even enjoy himself. He thrives better at home, if you call it that.
CS, I know how freightening it is when our HDs fall and get hurt. My HD was blacking out (for no apparent reason) for 1 1/2 yrs. We spent many trips in the ER and hospital and testing, testing with no information on why this was happeing. Eventually he was put on an anti-seizure med even though they did not feel he was having seizures. I was petrified of going anywhere. I purchased a transport chair which helped a great deal so that we could still get out and if he blacked out he would be safe in a chair. We don't know if it was the med's or he just stopped having these blackouts but he did not have any for over a yr. Then he had three near fainting episodes which again scared me (once in the shower while I was bathing him. I was so glad that I had hand rails installed). He was taken off the Dilantin and put on another med for fainting but I don't know how good that is either. The neurologist was not sure if it was any good and only time would tell. Not being able to communicate about how they feel is one of the biggest issues we have. I keep telling HD to let me know if he feels strange so he can sit down. We walk with a wheelchair just for this purpose. HD holds on to the back handles and I walk along the side guiding the chair (otherwise he would go out into the street as he has no sense of direction). Today we got home and he looked really pale and told me he was tired. This is a scary time. Hope you get the help and support you need to get through this tough time. Thanks for sharing.
My Dear Friends, Thank you so much for your input and concern.I will known much more tomorrow after apt. with social worker. In Ohio a community spouse receives an allowance of between 2,100.00 and 2,700.00 per month. In our case that would not cover mortgage, property taxes, utilities, condo fee, healthcare premiums for me and on and on. In addition, anything I earn would be deducted from the allowance. So you are maxed out at those numbers no matter what you do. I will be looking for work paying under the table. I know I'm lucky he's sweet and somewhat socialable but it makes my decision that much harder. If he was a miserable s.o.b. this would be easier. I'll post tomorrow after apt. Thanks...you are all simply the best. cs
I was pouring my heart out here when I absently wiped dust off the keyboard and lost the whole damn thing. So here it is in a nutshell. John escaped the home on Mon. afternoon and was found in the parking lot. He is now in the locked down alz. unit and wearing a monitering device. He isn't bothered by it at all so I guess he is where he belongs. As to medicaid: I will make application very soon. Thr admissions director said they can keep John for 100 days fully paid by medicare and private insurance so there is ample time to find out what medicaid will do. She also said I have every right to expect to continue to live as I have. That could mean I pay only $200.00 a month for Johns care. If that's true I think I could swing this by working under the table. She also said it could depend on who interviews me, what day of the week it is and what mood they're in. Not very reassuring but I have to go for it. Whitin the next week I will have a meeting with all the staff involved with John's care. I will make my decision based on their reccomendations and the final word from medicaid. This version seems cold compared to the original emotional one but I feel better for having done it. Take care everyone. cs
I'm hoping things begin to fall into place for you, CS. In thinking about various placement issues.. or trying to prepare. Just know that it helps to hear some of the particulars of these things.
I understand your situation, my DW has the same issues with Coumadin as your DH does. She recently had a stomach bleed and an EGD was performed to determine the source of the bleeding and cauterize the bleeding places in her stomach. At that time her Neuroligist took her off of Aricept and Seroquel to reduce the possibility of stomach irritation. She has been declining since the Aricept was discontinued.
Did the Docs remove hime from any of the medicines that could cause stomach irritation?
TIA's and strokes along with VaD/AD does make their care a lot more difficult, I am walking this tight rope with you. The best of luck to you, I hope you can get the situation resolved.
CS-Cathy I have been where you are. Isn't FTD the pits. My husband also climbed out windows and scaled high fences. You are fortunate to have found a secure environment.
My goodness. After I just got through reading a very funny discussion, these bring us back to "earth". CS, I am so sorry for your problem. It does sound like you are doing the right thing in getting professional advice. Isn't it terrible that we are at the mercy of "what day it is and how the person feels that day"? This should be less grey an area. Social work is very difficult. Each time you make a decision, remember, we are here no matter how "we feel and no matter what day it is". Keep in touch.
Morning friends. Feeling blue today and the reason is surprising. John is adjusting well in his new enviorment. A blessing I realize but I'm the one floundering. He fell asleep shortly after I got there yesterday so I left. I had nothing to do and nowhere to go. Our days are so consummed with care for our LO that when you're cut loose you might feel lost. I went to the mall which would have been a huge treat two weeks ago but I felt like I was just killing time. It's not like I don't have things to do I just don't feel like doing them. Maybe mini depression? This too shall pass. On the lighter side I overheard two aides talking about John yesterday. They think he's so sweet and cute. When I told them they were talking about my husband they told me stories about him and said they were happy to have him. Seems at lunch he reached over and took someone elses brownie and didn't feel the least bit bad about it. Also found out there has been a running bet as to whether I'm Johns wife or daughter. Somewhat of a compliment but a year ago that wouldn't have occured to anyone. Mary Grace has taken a shine to him and sits as close to him as she can. I noticed she scoots away as soon as she sees me. The aides said she checks out all the new guys! What I am doing now is observing the interaction between staff and residents, activities and routines, most importantly Johns reactions. I have to say that so far I have been pleasantly surprised. The staff hugs and kisses the residents and are always upbeat. John was showered and fresh as a daisy yesterday. The activities director told John she had been praying for an angle and she thinks God sent her him. There are many many homes in this area so I do have choices. Today I will look again at a place I had considered before this became an emergency. I owe that to John. To Kathryn... yes it is sad that our entire future depends on whether or not someone is PMSing.
So glad it's working out for him. Remember when you go looking what we all talk about, that the appearance of the facility isn't always the best guide to how well cared for the residents are...
Hello everyone. It's been awhile since I've had time to post. John ended up being hospitalized on May 2 because of the uti. The nh called because he had near syncopy and a serious drop in blood pressure also low pulse ox. After 4 days of testing no cause could be found. While at the hospital I spoke to a liason from the nh and told her I felt his care could be better. She make some calls and assured me the situation would improve and it has. They now have him on a regular toileting schedule instead of hit or miss. The uti has cleared up and he seems pretty content. Sadly he is now on a pureed diet because of his choking issues. Even this dosen't bother him. I guess my decision to place him has been made based on his reactions certainly not on mine. I miss him like crazy and think about him all the time. I visit him twice a day. Last Sat. I took a huge chance and brought him home for a few hours. When I said it was time to go he got up and went to the car without comment. That to me spoke volumes. A new nh is having an open house tomorrow . It' s 6 miles from my home. This is the last place I will look into. If it isn't considerably better he will stay where he is. Placement is even more difficult than I imagined. There is no sense of relief only guilt heartbreak and lonliness. cs
CS i can only imagine the heartbreak of having to place our spouses. the fact that he did well at home for a visit is a good encouragement, and more so that he was willing to go back to the facility without incidence. i am glad they are taking precautions against further uti and getting the toileting issues worked out. i hope he does well either there or at the new NH. divvi