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By Emma On 2010.02.11 07:37
We have been on a wild ride lately and I need to vent. It seems that over the past month or so that there are more, and more extreme swings in how my husband is doing. Somedays he walks reasonably well with no staggering or balance problems, his voice is clear and appropriately loud, his thoughts are fairly clear and well ordered and he can get sentences out with no problem. Other days he can barely move, his voice is barely audible, and when he does speak what comes out is slurred, stuttering and makes no sense and he has a lot of confusion, delusions and hallucinations and he's paranoid and suspicious. Twice lately he has slid right out of a chair onto the floor. He has auditory hallucinations several times a day, even on good days. His visual hallucinations are usually of mice and bugs, occasionally of a man sitting on the couch or at the table. The past three days in a row have been bad. Yesterday he kept insisting that he needed to take a Viagra because we had a date. He thought his brother was in the hospital and we had to go see him. He asked me repeatedly if we had a mortgage and how much it was. He is (understandably) very concerned about who will take care of him if I die. He asked me if I die first if he will inherit money from my aunt. He wanted to go to bed at 8:00 then woke up at 11:00 and told me he had taken a Viagra, that there was a pitcher of water on his dresser that was making a lot of noise and he wanted to know who was in his bed with him. I put all of his medication where he couldn't get at it because I was afraid he would OD on something. All of these kind of things have happened before but it seems to be getting to be more of a roller coaster and I never know what to expect from day to day. Physically he has been having a lot more trouble, especially getting in and out of bed and moving once he's in bed. We just got a new mattress for him with a low rise box spring that has lowered the overall height of the bed by about four inches. That has helped a lot. A couple of weeks ago he plugged up the toilet and didn't tell me. By the time I discovered it water had come through the ceiling in our finished basement in three places causing extensive damage to the drywall, paint and carpet. Last month our perfectly healthy eight year old cat died suddenly. I had a necropsy done which showed that his spleen was cut right in half and he bled out from that. I suspect, and have reason to believe, that my husband rode over him with his ustep walker and didn't tell me. I'm sick about it but not angry as I know he wouldn't have done that on purpose.

I'm exhausted. When we are going through the bad days I wonder how much longer I can do this, especially the physical care. He's heavy and hard for me to manage. When he has good days I think that we have may have a lot of quality time left at home together. It's so confusing.

Last month we saw a movement disorder specialist who confirmed the Lewy Body diagnosis but had no other recommendations except a slight change in the timing of his medication, which his regular neurologist implemented. It doesn't seem to have made any difference. It seems that as he gets worse the neurologist doesn't help as much, yet interestingly his family doctor becomes more helpful. Last week when we were there we brought in his medical power of attorney and DNR to be filed with that office. The doctor spent a lot of time talking to him frankly, but gently, about late stage Parkinson's and end of life issues. I was very thankful for that and for knowing that the doctor heard directly from my husband what he wants and doesn't want and he supports those decisions.

Anyway my friends, thank you for listening. I appreciate all of you so much.

By Reflection On 2010.02.11 11:31
Oh, Emma, I wish I could do something to help.
I wish it were easier to know what to do - the swings make it so confusing, and it is so very hard.
Your posts have been so helpful - we're not quite at the stage you are, but close, it could happen any time, and you have helped me to face that time.
I wish I could express my thanks in some way that would make your life easier.
You are dealing with a very difficult situation with great grace. I admire you greatly.

By Emma On 2010.02.11 12:17
Reflection, thank you so much, I can't tell you how much your words meant to me. This board helps me so much, it's good to know that I am helping someone else too. We all need each other. Em

By MJ-Camano On 2010.02.11 13:06
Emma- Thank you so much for sharing your "ups and downs," I believe my husband is also at that stage. The Parkinson's Dr has never mentioned Lewy Body Dementia, but after the suggestions on this site my family has done alot of research and I'm sure that is what my husband has. The ups and downs from day to day can be very confusing. I have also been working on getting all the paperwork done, there are so many details to attend to. The advisor at our local senior center is so helpful. A special thank you to everyone on this site, I have been reading all the forums for about 6 weeks; this is so wonderful to beable to have others available that understand.

Maryjean

By LOHENGR1N On 2010.02.11 14:07
Just for clarification Lewy bodies are a hallmark of Parkinson's Disease and confirmed upon autopsy, as explained below it's the location of these Lewy bodies that differentiate Lewy body dementia and classic Lewy bodies in Parkinson's Disease. It can become confusing and seemingly a muddled mess to Us laymen and women when talking about Lewy bodies in Parkinson's and Lewy bodies in dementia. Take care, best of luck and hang in there.

Lewy bodies are abnormal aggregates of protein that develop inside nerve cells in Parkinson's disease (PD) and some other disorders. They are identified under the microscope when histology is performed on the brain. Lewy bodies appear as spherical masses that displace other cell components. There are two morphological types: classical (brain stem) Lewy bodies and cortical Lewy bodies.

Cortical Lewy bodies are a trademark of Dementia with Lewy bodies (DLB)

By Emma On 2010.02.11 15:32
As Lohengrin has noted, Lewy Body disease is very confusing and is, in fact, a spectrum of disorders with both dementia and motor symptoms. Like Parkinson's there is no real "test" for Lewy Body Disease, and like Alzheimers it can only truly be diagnosed at autopsy. Like Alzheimers, diagnosis in the living is based on research done into the symptoms and patterns of symptoms and behaviors of persons who, at autopsy, were found to have the disease. Presently diagnosis is based on certain defining characteristics of the disease. There are many good websites, including lbda.org that can provide more information. For anyone who suspects this disease I urge you to bring it up with your neurologist. There is specific information they need to have regarding symptoms and timing of the appearance of symptoms to make the diagnosis. Some of the information is not things they might normally ask you about and thus would not be aware of. I think it's important to know if some form of Lewy Body Disease is suspected because people who have the disease can have adverse reactions to certain medications, especially some antipsychotics, and don't respond the same to Parkinson's medications. The diagnosis is sort of a sticking point with me. Just as many on this board have stated that they want Parkinson's Disease to be listed as the cause of death on the death certificate (something I agree with), even though Parkinson's is not technically considered a fatal disease, so too do I want my husbands diagnosis to accurrately reflect his disease.

Again, I am eternally grateful for all of you and the support and compassion that is exhibited every day on this board.

By annwood On 2010.02.12 00:55
Hi, Emma
So sorry that you are going through this. I don't know that it really matters which form your husband has because at this stage there isn't too much one can do about either. I am always struck by just how similiar these situations become. More often than not the neurologists begin to distance themselves just when we need them the most. You are fortunate to have a primary care doc who is there for you. I found ours to be the most help in the later stages of the disease. It was quite obvious that ours did not approve of all the meds my husband was taking and he scaled much of it back. It really didn't help but atleast we were using less medication.

Those good days are almost cruel. I would always try to figure out what was different that might have resulted in those good days but never arrived at a solution. You will find that they become fewer so enjoy them as they come along.

At autopsy my husband had Lewy Bodies, Alzheimers and an undiagnosed blood clot which we suspect happened at the time of his DBS surgery. Certainly enough to justify his behavior. The neurologist sent a letter to me afterwards - one paragraph in which he stated that the autopsy demonstrated that my husband had Parkinsons Disease. No kidding!! I called and told him I expected a copy of the autopsy report - he said he didn't believe I should be subjected to that. Needless to say I eventually got it.

It sounds as if you are experiencing the stressors of caregiving and your husbands apparent dementia. It does get to you. When you live with the hallucinations, dellusions, etc. you can start to think you are the one who is crazy. Do you have any help? I think I would discuss Hospice with the primary care physician. Remember it doesn't mean death is emminent but rather there is a progressive disease going on. I have said many times they got me through this.

I am also sorry to hear about your cat. Don't underestimate the impact of that on your psyche. I love my animals and they are a great confort to me.

We are here for you.

By Emma On 2010.02.12 06:50
Annwood,

Thank you ... words of wisdom as always. You are right, the good days are cruel. When they happen I find myself thinking, even though I know better, that the Parkinson's is getting better and/or that the bad days are a fluke and he's not as bad as I had thought. Then it starts all over again.

I am weary and I am concerned about my ability to physically care for him as time goes on. And the roller coaster aspect wears on me, however, as this disease has progressed I find that I actually feel less stressed than I used to, probably because it is more clear to me that he is truly suffering from something over which he has no control. I am actually more patient and compassionate, I rarely cry anymore even though it all just breaks my heart. At the beginning I just saw this going on endlessly into the future, now I see that there is an end coming, maybe soon, maybe not, but I am trying to make sure that my husband has the best life possible given his condition and I want him to know that he can count on me to be there for him and I am trying as gently and kindly as I can to help him prepare, physically, emotionally and spiritually for the future. I have come to believe that this is the best gift I can give him.

We have one very good friend who has stuck with us through all of us. He is one of the few people, besides me, who has actually seen my husband at his worse and knows how bad it is. Recently he has started to come and sit with my husband so that I can have a break. I'm very thankful for that.

So, I'm doing OK, sometimes I just need to vent and knowing that you are all here is a blessing beyond measure.

Emma

By MJ-Camano On 2010.02.12 11:34
Emma - have you checked with your local Senior Center or Senior Advisor thru your county to see if you are available for Respite care? I was just approved for one day a week, the center was so full of available information on what needs to be done. I would urge you to do this for yourself, as it is important to have time for yourself. I also find as this disease has progressed I finally have my compassion back - I think this was so very hard for me as I am normally a very understanding person, and I had no patience at all with my husband thru the first stages of this disease. Thank you for sharing.

By lbellomy On 2010.02.12 12:02
My husband also has symptoms of PDD/LBD. He has had a very strong case of Capgras syndrome, where he does not know me as his wife but someone else. Yesterday for a while he realized that I was his wife and expressed that I had been gone a long time and how much he missed me. Today he woke up and asked me what my name is.......
Lorraine

By dkleinert On 2010.02.21 01:50
Dear Emma: Wish I could hug you now. So sorry to hear all that is happening. Sounds like things are worse now. You are sooo correct about the good minutes, hours and days. I, too, delude myself that things are "better", when they are just an illusion. How can you continue to handle all of this? I think annwood did hire someone to help her when the nursing home could not take care of her husband, and hospice was a big help. Just contacting hospice will be a difficult thing maybe - kind of admitting where you both are with this awful disease. So glad you vented here.......I can so relate. Since my husband had his knee replacement back in early Dec., it has been a revolving door of PT, OT, Home Health aides. He is still not back to where he was before the surgery, and I am beginning to accept that he won't ever be at that stage ever again. I see the contrast and how much more child-like and dependent he is now versus 3 months ago....and you are dealing with so much more.

Emma can't you obtain some help from the local Council on Aging? They are usually part of a county program, and ours is a "pay if you can, when you can or not at all" program. Check into it. Maybe they can come to help you. I have a Home Health Aide 2 times a week for 1/2 a day. She cleans my husband's bathroom, changes his linens, cleans the kitchen, encourages him to exercise, makes sure he eats.....does whatever he needs. She could come more, and will as time goes on. Check into it for YOUR sake.

Bless your heart, dear Emma - I care so much about you. Thank you for writing and helping all of us to see where we are heading so we will recognize it as it comes.....we love you and are always here for you.

By deflo On 2010.02.21 21:08
Emma, I know how you hurt and I can so relate to what you are experiencing. Here is some info that might help. I live in Florida and we have an old law on the books call a spousal right to refusal. You can refuse to support your spouse financially and then Medicaid has to pay for either nursing home or home health. It takes some digging to find out about it, I think about 30 states have it, NY is also one of them After my husband became a threat to my safety, (he suffers from Capgras syndrome too and has been diagnosed with Lewy Body dementia and he thought I had killed the good wife and was going to kill him too) his neuro told me that I had to put him in a home for both our safety or my sons would be burying two parents instead of one. Well thank God for a wonderful social worker who told me about this little known law and instead of having the financial burden of having him in a home, Medicaid is going to pay for it. It takes a lot of planning and filing of paper work, that same social worker is doing all that for me, (for a fee of course) but it's better than having to pay almost $8000 a month to a nursing home. I am not going to let this disease take us both down, and leave me destitute too. Hope this helps. Big hugs to you.

By Emma On 2010.02.22 08:44
Thank you all for your wonderful advice, and especially your support. The past few days have been pretty good so we are both getting some much needed relief after a couple of really horrific days. As you all know, the roller coaster aspect is very draining. I will check with our local Council on Aging to see what is available. One of our friends is helping me out from time to time but I need more than that I think.

deflo, it's funny that you mentioned the law regarding refusing to support your spouse. I just recently found reference to that on the internet regarding the state we live in so it's something I will need to look into. So sad that it has to come to something like that but I'm afraid it might. Worrying about money, for now and the future, seems cold but it's reality and something we need to think about.

Thank you all again. You are my lifeline.

Donna, you are dear to my heart. Thank you for always being so loving and open.

By deflo On 2010.02.22 09:35
Emma I too stuggled with the guilt that comes with "refusing to support your spouse" but we also have to think about ourselves. If it weren't for this law, I would be drained financially in no time and where would that leave me, on the streets or with my kids. It's hard to think about it, we tend to worry what others will think of us, but I've come to believe that the "others" don't matter, they aren't payning the bills or caring for our loved ones. You have to get selfish, we are our own caregivers too, we are on the front lines, we have to make the tough decisions, see if you can find a social worker who can help you with this, it will be one less thing you have to worry about and believe me it's a big thing. Let me know if you need any advice with this, I'll be glad to help you.


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