Helping Those Who Care for Parkinson's Patients
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I would like to ask a few questions to see if any of you have experience with the particular issues we are dealing with right now. My HWP has heightened anxiety and an increasingly depressed mood. He was put on the lowest dose of Seroquel four months ago after I could not keep him inside the house with me because he thought I was a ‘different’ me. I have felt bad about putting him on it because it is not supposed to be very good for older people but he was distraught and something had to be done or I would not have been able to keep him home with me. He has done fairly well on it but he seems to be progressing further into his dementia and wants to ‘go home’ more frequently than ever before. He is less engaged, more agitated, frustrated and hopeless. I plan on contacting the Neurologist tomorrow but wanted to see if any of you have your loved ones on any medications for anxiety or depression, and if so, which one and how are they doing on it? I know the doctor will weigh the benefits and risks for him but I thought that I might learn something from your experience. I don't know if they will want to increase the Seroquel, which I understand is often written to help patients sleep, or write different script altogether for the worsening anxiety and depression. I worry about him falling If he gets too sleepy. I am worried that we may need him to go to a memory care facility in the near future. Although he is not exhibiting all of the symptoms, he is showing signs of being in Stage 6 - Moderately Severe. He is having more trouble with language-understanding it, getting the correct word out, mistakenly using a similar word and pronunciation. He is having a harder and harder time concentrating, he does not feel involved or like he is a part of what is going on, and it sounds like he is having more trouble recognizing himself somehow. With communication getting harder for him I am not sure I am understanding what he is trying to express. Are any of your loved ones in care? If so, how did you know it was time to take that step? I already know that the guilt will do me in. Even with my Traumatic Brain Injury and being 100% disabled myself, I cannot imagine being able to make that decision. Thank you for reading this and responding if you have any helpful comments. NoMatterWhat |
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Mom has some of the same problems, but has never wanted to leave the house. She's always seemed better when home than when anywhere else. ... Before her DBS, I remember specifically one of the screening "test" questions (they wouldn't do DBS if the dementia was too bad) was about if she ever used the wrong words, etc., and I remember that she had not. That was in 2020 or early '21. Now she does that all the time, but at least some of the time she knows she's said the wrong word and either corrects herself, or gives up on remembering the right word. Other times she seems to just plow forward and not notice. Sometimes when she is on the phone with family members, I can tell she has lost her train of thought or forgotten part of what she was going to say, so starts making up things to fill in the gaps. If it's important, I correct her so at least the family member knows the right information. If it's not important...I just ignore it. ... I didn't used to think about how I would know when it was time for care that I couldn't provide anymore, but now I think about it all the time. I told our estate planning lawyer last summer that I guess it would be if she was wheelchair bound, but now I'm not sure. if she gets so confused that she cannot spend an hour or two alone for me to go to the store, mow the lawn, whatever, without me worrying that she would hurt herself, then I guess that would be another deciding factor also. But mostly I just feel like I'm flying blind and hoping I don't fly into a mountain or crash straight into the ground. |
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Hello, greyeyed: I appreciate your reply and your honesty very much. These are really hard days. I have been trying to learn about dementia and caregiving online after my HWP goes to sleep. I discovered a geriatrician named Tam Cummings on Youtube. She has so much dementia information that everyone with any concerns should hear. She also has a website which, when you scroll all the way to the bottom on the first page, offers ‘tools’ which are questionnaires for caregivers to use to stage dementia, screen fir depression, anxiety, pain… there is even a caregiver depression (overwhelm/burnout) form. Go to Tamcummings.com if you would like to see what is there. They are free and i used them twice today- first at my husband’s dr appt, then tonight I shared the free resource with a new online Carepartner burnout group and it was enthusiastically received. And I should say, my HWP scored in the very severe and severe stages of depression, anxiety etc and I did too which is why I am having to follow through on beginning therapy, both group and individual one on one. I feel I am crashing and burning. My HWP is at a stage that he cannot be left alone at all and we have had no caregiver help though my daughter has helped as much as she can with groceries, an occasional meal and both daughters have been there through many phone calls to calm and orient my husband. Something has got to give. Thanks again for your being here for me and others who are reading this and learning. NoMatterWhat |
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I looked at that website last night, and there is a lot I relate to. Mom can sometimes bathe herself without much trouble, but often needs help dressing, etc. She hasn't driven since 2007. She hasn't been able to prepare her meds since 2014. She asks to see her bank statement all the time but cannot really understand what it means anyway. Sometimes she can prepare something to eat. She sometimes makes things up when talking to family on the phone because she can't remember (not lying, as the website said, but as if her brain knows something is missing so it just fills it it with something). ... Last night she crashed into off time pretty hard, so I gave an extra half of sinemet around 5:45. By 7:45 she was still off, so I gave another half. By 8:30 she took off with dyskinesia. I waited a few minutes after 9pm for that regular dose (no extra) and turned her DBS down even more than I do when she goes to bed. She finally slowed down at 11:15, so another evening of stress. It wasn't too bad, though. ... I also appreciated the inclusion of caregiver burnout, etc., as factors. I think my last hopes are that the doctor finds a dementia pill that works for her, and that if Medicare approves the Vylev pump soon, we will be able to try that...and it will actually work for her. Lots of "maybes" and "hopes" in that. |
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Hello all- Today has been a tough one, the kind caregivers are all too familiar with. I had to deliver news that just crushed him: It is not safe for him to use the machines that he has spent a lifetime operating and that he is not to try and do so anymore. The tractor and mower have not run in quite some time so they have not been an issue really but I had to make it clear to him what I was saying. He just wept quietly. He did not argue or debate it with me because I think whatever tiny part of him that may still be in there knows how bad off he is. He said that he cannot even say what he wants to because he can’t get the words out. It broke my heart. This man worked with every kind of equipment all his life -bulldozers to backhoes, jack hammers to geo phones, dump trucks to 18 wheelers, worked 4 and 5 jobs at a time so we could afford for me to stay home with our children-and fabricated what he could not find or afford. He worked sun up to sun down and fell asleep chewing his food at the dinner table because he would work himself to death. Now I have taken his hope and last comfort away from him. As his caregiver it is up to me to have this unfathomable conversation with him. It is surreal and I cannot believe I finally had the strength to do it. It just kills me that I had to cause him the pain that I saw today. No doubt all of you have had, at some point, the unenviable task of delivering the bad news as their declining ability causes us to make their world smaller, more controlled and consequently less familiar to them. Today was really hard but I have to wonder how awful tomorrow will be when I will have to do it all over again because he will have forgotten what I told him today. It will be the worst kind of groundhog’s day. NoMatterWhat |
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Hi NoMatterWhat! That's tough. My dad, who passed away two years ago in January, was tough as nails too. A Vietnam Veteran, Marine, fought in '68. He had the riding mower, tractor, etc. also, and never wanted me doing any of that because that was "his job". I never had to have that conversation with him because his heart failure (almost exactly three years ago) made it impossible anyway. He did accidentally drive his truck off the road...I think in January of '19. He was reaching for a kleenex with the sun in his eyes while driving up our private road, and drove off the side nearly into a neighbor's back yard. Otherwise his driving was ok all the way up to May of '22 when he got sick. ... Such different experiences taking care of him and mom. Dad had severe PTSD from Vietnam, diabetes, eye problems, and heart failure. 2014 was a bad year for his health problems, and 2022 before he passed. He did end up driving mom's mobility scooter around for doctor's appointments in those last 7 months since he could no longer walk very far, and was on oxygen most of that time. ... It was weird, but my brain halfway thought I could manage his health problems indefinitely the way I seemed to manage mom's Parkinson's. But it was apples and oranges. They gave him 6 months to a year, and he made it 7 months. I can remember in 2015 when mom was having such problems with med changes and withdrawals, two family members told me to put her in a nursing home. One of them has since passed, and the other is now in a nursing home himself...and mom's still kicking well enough, still at home, and I'm still taking care of her...10 years later (and 15 after her diagnosis). I guess things could be worse, but as I tell my students, "Life's hard sometimes." |
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Greyeyed Teacher- I hear what you are saying, that sometimes life is hard. I have been telling myself that and always thinking about people who have had tremendously difficult lives. I have no right to feel I should have an easier time of it than anyone else. I am just taking it one day at a time… well, more like minute by minute sometimes. Glad to catch you again. Thanks for your input. NoMatterWhat |