Helping Those Who Care for Parkinson's Patients
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Hello my friends. I have been checking in but too exhausted to add or reply. My HWP's PD is continuing a slow pace forward but his dementia has increased exponentially. Every single thing is so hard, takes so long, etc. I have been stressed out and hit my own rock bottom several times in the last month and a half. I believe the dementia (atrophy in his brain) are causing significant trouble with his sight and hearing. He seems not to know how to use certain things, like how to cover himself with a blanket or how to use a straw. He looked at his hand holding a glass of water then watched himself turn it upside down, dumping water in the living room. He has admitted that he feels he is almost losing his bowel control, is beginning to have trouble getting the larger pills down and has had to cough them up a few times lately. (which caused further concern because he coughed one up and indicated he was all better only to cough another one up as I made it into the next room. He did not indicate that he was still having trouble and he could have choked to death with me in the next room!) He is unable to dress himself now -he puts his pants on backwards or tries to put both feet and legs into the same pantleg, goes for an overshirt and comes out with socks, heads for the bathroom and ends up in the front hall, thinks the blanket on his lap is the cat, picks up both halves of the sandwich stacks them on top of each other and then cannot understand why he cannot eat it, unbuckles the seatbelt as we are riding down the road, cannot follow basic commands, will say "up" meaning down and "down" meaning up, on and on. I love this man so dearly but find I am so frustrated, angry and sad. I am upset with myself for not being able to do a better job taking care of him. I try so hard. It seems that he always asks for one more thing than I can handle after I have already danced my way through several surprises. I spend all my energy trying to keep up. We have had a nurse case manager tell us that the recliner he sleeps in is not supporting his back very well and an adjustable bed would be the next move. My HWP did not want to purchase a mattress that he could not test first so we went to a store. It took more than half of the time there just to get him to reach out and touch the bed. I did what I wanted him to do and it was all we could do just to get him to sit on the mattress. I tried to have him lay down and .... it just did not go well. I can relax and be patient and understanding as long as I am not trying to accomplish anything. He has been up in the night too. I wake to find him rummaging, pointing the flashlight right in my face, walking around the house, etc. It is so hard to get him to go back to sleep then an hour later he will ask me if he can try to go to sleep now... If he knows he has an appointment the next day, he is up almost every hour worrying if it is time to go yet. I have to say, again, it is heartbreaking that I have already lost my opportunity to talk to my husband about important decisions, etc. He is unable to follow one train of thought and continues talking about something else even when I carefully say "I understand about that but right now I am asking about 'X'. All this being said, he is a very sweet man. It is so sad that this is happening to him and he deserves better. I start everyday telling myself that nothing is more important than him and his happiness. I wish I had more patience, endurance and humor. I know you all understand. Thanks for listening. NoMatterWhat |
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Mom has many of these same characteristics. The "up is down" thing drives me crazy. Whenever there are two opposites--left/right, up/down, on/off, in/out, yes/no, whatever--she will often say the wrong one. She also has trouble at least some of the time putting both legs in one pant leg, or when getting ready for bed she will put one leg in the wrong hole of her Depends (and occasionally it will be inside out AND in the wrong hole). Last night she called me in the bathroom to help, and we were both surprised that she actually had the correct leg in one of the holes, but I had to help with the other leg. She also has a space heater in the bathroom and can't figure out how to turn it on...even though it only has one button that lights up when it is off. I try to tell her there is literally only one button to push, but half the time she asks if is the red indicator light on the side that would light up if it were on...which isn't even a button, nor is it lit up when it is off. ... I'm a teacher so my first impulse is to always try to get her to do as much as she can on her own. Often she can do things on her own but she just wants me to do it, and that drives me nuts because I feel like if I start down that road, I'll be doing everything all the time even when she can do a quarter of it (or half) herself. It feels so often like she just gives up before trying. ... Many of the other things are familiar to me also. Another is that she has severe difficulty using the phone anymore. If she has the phone number written down in front of her, she has about a 50/50 chance of being able to punch the numbers in (but she can't find the phone numbers anymore, but she'll start digging through a stack of notebooks to try to find them). And in the last few months she sometimes forgets which button to push to answer the phone. I say "the green one", and she says "I can't read them," and I say, "You don't have to read anything. Just press the only green button," and she ends up pressing the red button or a random number and I feel like I want to run away into the woods somewhere and never come back. ... Sometimes are better than others, and I hope the new Memantine she's on will help some, but it can be extremely frustrating. I sometimes feel like "I'm a teacher. I'm trained to communicate well with others and help them learn." But nothing I do or say seems to be effective...at least, sometimes. |
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I understand what you are saying and I have been trying to back off and let my husband do what he can but it is difficult to do because it usually makes so much more work for me fixing things after he tries. He has not been able to use his phone for a very long time. He actually answered it yesterday when his friend called and it took me a few moments to realize that he managed it! I am trying to slow down and enjoy the time with him. Tomorrow is another day- NoMatterWhat |
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| I know exactly how you feel NMW it's exhausting. I'm in my 80's and it's hard enough doing things for myself with the usual aches and pains of old age, let alone dressing him, etc. all day long. Al I can say is Hang in There and don't worry if what you do isn't perfect. |
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A couple days ago I came home and mom wanted me to call her brother, who is older than she is and also housebound, etc. So I called. He too can only push the pre-programmed numbers in his phone, so he couldn't dial his neighbor to come over and reposition him on the couch. He called mom to call his neighbor, but she couldn't punch in the neighbor's phone number either! ... Sometimes my life just feels crazy. |
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I'm feeling overwhelmed again. I think mom's dementia has been worse since stopping the memantine, seemingly worse than before she started it. Last night she was in the bathroom, putting on a garbage bag as if it were pants. When I asked her what she was doing, it was all garbled and made no sense. ... I thought maybe there was too much extra sinemet on top of the Rytary in the evening, so I reduced it a little this evening. But now she's more off, and sending me in circles again. She wants water, ice, a spoon, a bottle of cranberry juice, coffee, tea, reheat the coffee, help her to the bathroom, help her back, reheat the tea... until I finally just told her no, that's enough. ... I'm just feeling really frustrated and angry. I think she's evening out some now, but it's almost 9 o'clock. ... It's getting to the end of the school year and I'm tired. If mom is this bad or worse next year, I don't have any idea how much longer I can do this. And I know it's not as bad as it could be. She's not bedridden, or needing a wheelchair. But if I had to leave my job or reduce my hours...I don't see how that could possibly work. Even if we had to increase the caregiver hours to 7 or 8, mom's money could probably cover that but it would STILL just be the hours I am at work. I'd still have to do everything AFTER work. ... It's 9:30 and she's quiet in bed now. I can finally breathe after a few hours of nearly nonstop stress. ... Edit: she was much better the next night. I wish I knew why. I'd bottle it and sell it. |
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| Dear Greyeyed Hope things get better for you. I know how frustrating and exhausting this whole caregiver thing is. |
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Greyeyed, I appreciate you sharing because I, too, am overwhelmed and exhausted. I have to tell you, i think of you every time my husband wants coffee reheated, then it is too hot, he waits, then he wants it heated again, then it is perfect but he puts it down, wanders away, comes back an hour later, sips it and asks me to heat it up again. I have to tell you all that my husband and I had another talk the other day. It was our 39th wedding anniversary. He does not know me and he says that he thinks it has been two years since he knew me. Again, he asks me my name. He said he does not remember much of anything about his wife (me). He said he does recognize his children but he does not feel like a part of what is going on. Our youngest came home from NYC and we all had dinner at our oldest daughter’s new house. I could tell he was not having any clear communication with anyone. We left early. The conversation we had took the oxygen out of the room. He eliminated any doubt I might have had about how much has been lost. He does not know me at all anymore. He does not remember me with love sometimes… it is never at all…anymore. It is a thing of the past. His diagnosis with PD was five years ago and now dementia. There have been some tough times but this just blew up my life. There is nothing to do now but pick up the pieces and put one foot in front of the other. Life as I knew it is so far gone there is no looking back. I have decided to contact all of our friends and schedule them to come cover me for as much as I can get. He does not take comfort from me, he does not feel he ‘needs’ me. I am just the old lady who pesters him to “sit down when you are putting your pants on” or “let me help you put matching shoes on.” I just cannot believe that I am asking myself if I just don’t love him enough. There is no more love in the world. I used to watch him drive down the driveway on his way to work and I wondered how I would make it until I saw him again. I have love. I just know now that there is no love in his eyes when he looks back at me. I am absolutely heartbroken. |
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It's so hard. I remember Penn Jillette (the magician) gave an interview about his mother in her declining years, and he said the most important lesson he learned was to "learn how to love who she is now". I keep telling myself that. Not sure it helps. But it does no good to be angry with her because she isn't like she was 30 years ago...even if anger is a natural response. ... Mom generally knows who I am, but she often confuses me with dad, who passed over two years ago now. What's worse is that I'm starting to look more like dad every day, with my gray hair. It sometimes feels like my identity has been subsumed by dad's. |
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| Yes, I agree it's really hard to "love the person he is now". I DO love him but he's certainly not the same man I fell in love with 63 years ago. But each day we press on. Some days are better than others for sure. God Bless ALL of you who are dealing with this awful, horrible, terrible disease! |
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Mom's confusion fluctuated yesterday, but it's starting to scare me a little. When she finally made it to her living room chair, she said she didn't know what the show on the tv was. I told her the tv wasn't on. She asked if that was just the reflection of the living room windows, then? I said yes. She said oh. ... Later she asked me to "help her with her shirt". When I asked what was wrong with it, she said it needed to be adjusted so that all the little kids running around the house couldn't pull on it. (There were no little kids.) ... Sometimes her confusion seems worse when she's in dyskinesia or off time, but sometimes it's not great when she seems "even", either. I almost want to ask the doctor to try one of the dementia pills again. Or maybe she has a UTI, but generally whenever she tests for that it comes back negative. |
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| Sounds like she's hallucinating. Better call her doctor and tell him about this before it gets any worse. |
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| She's had auditory hallucinations for 10+ years (generally harmless and I just tell her I don't hear anything), and occasionally visual. The doctor is aware, but she already tried mom on the main two classes of dementia medications and both didn't work/had intolerable side effects (the doctor said she could try others, but she'd probably have the same side effects since the drugs are in the same class). She was better yesterday, but the hallucinations are still happening. The doctor wants to try Nuplazid after the Vyalev pump is started, and she's stable. We do that on June 19th. |
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| Hubby has been hallucinating again. Tried to reach Dr today, but he's not there on Saturday so will have to wait til Monday. He sits on our screened in back porch and sees thing that aren't there - steps moving, people partying, a lady in a purple dress - on and on. He picks up his cel phone and tries to call the police. I try to "nicely" tell him there's no-one there and encourage him to come in the house and watch tv with me then he calls our son and tells him the steps have moved (of course they didn't) So FRUSTRATING! |
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Dementia got so bad HWP actually dialed 911 even though we took his cel phone away from him he used the store landline to call. Thankfully they called back and we explained the situation to them and told them everything is fine. Last night he wanted me to call the police again to "chase the boys off the back porch". It was time for him to go to bed but he refused to take his clothes off and get into bed. So I pretended to call the police (I really called our son) and said "I need you to come and help me put my husband to bed" He finally complied with the help of son. The doctors office finally called me this morning and they're prescribing a medication to help. It will make him sleepy at first but hopefully it will help. |
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| While it is heartbreaking to read what you are going through, I am at a point where my HWP is more and more forgetful and confused. Trying to move past denial into the next phase is really hard. I am extremely depressed. I see a therapist every one to two weeks which really helps. I have had to take over making important decisions. Last summer I realized I needed to take some important steps so met with my attorney and got things in a better place. He had cataract surgery last Friday and it went pretty well. He is scheduled to have the other one in 3 weeks then I'll be having shoulder surgery. I feel overwhelmed most of the time. Right now I am trying hard to accept that it isn't going to get better, only worse. I so appreciate you guys listening to me. I hate to whine but I think I'm really scared right now. |
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| I am feeling overwhelmed, too. I've been thinking of talking to a therapist. The jury is still out on mom's Vyalev pump. We're going back on Thursday to adjust all the settings up. A few hours yesterday were terrible--almost the whole day was terrible. I had to use all 5 of the allowed "extra doses" yesterday (there is a button to push for a little extra in off times), and had her on the high setting all day. In those awful moments, I wonder what the heck I'm going to do if this keeps up. I put her on the "base" (medium) dose all night, instead of the "low" dose, and she slept fine and was quiet with no dyskinesia. I think the doctor had it right the first day, but mom started having dyskinesia right away, so the doctor moved everything down 10%. I think her dyskinesia was from the "loading dose" and lingering affects of her Rytary. After all of that wore off, all the settings for the pump were too low. (I can feel myself obsessing over every little detail. I think I need to talk to someone also.) |
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| Dear Greyeyed, I'm so sorry. Even though I am an RN, I was not familiar with the meds you talked about so I looked them up. We definitely aren't there yet. But, I have had the same therapist for quite a few years now. She is wonderful and helps me so much. It's amazing how talking about what your PD patient is doing and, most of all, how you feel about it and how it affects you. I highly recommend it. If you are comfortable doing it you can ask friends if they see someone and would recommend them. You can also ask your doctor for recommendations. I was still working and found this lady through my EAP benefit at work. She turned out to be the right one for me. Just a note that no one therapist is right for everyone so you might need to try a few different ones to find the right one for you. I just wanted to share some thoughts about seeing a therapist because I have worked with one off and on for many, many years. I pray a lot too although I realize that is not for everyone either. I will be saying prayers for you. Thank you so much for your support!!! |