For those who care for someone with Parkinson's disease
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These last two weeks or so have been the most trying time of my life. My hubby just doesn't talk much at all anymore. Maybe first thing in the morning he may say a few things. He doesn't even answer a simple question. When he does mumble something that I can't understand then it becomes questions with no answer or indication if that is what he wants. I usually can tell when he has to go to the bathroom but if I ask him he just stares off and doesn't give me an indication if it's a yes or no. No matter what I ask him I don't get an answer. This for me is the most difficult part of PD and I just can't seem to deal with it. I'm paying for help, $25/hr for two hours on Mon and Wed and four hours on Fri. So far it's help giving him a shower and a few other things. But, I'm not able to leave the house to go anywhere because my hubby freaks out and cries for me to get home now. This happens a lot even when I've been to the store for 30 minutes. This is even with our son home and the caregiver who he seems to like well enough. I more often now wish I could just go to sleep and not wake up. I hoped getting help would ease the stress and anxiety. We even have Home Health PT once a week, OT twice a week and a nurse once a week for 5 weeks. They are great and have a lot to show me and Medicare pays for it. I don't know how long I can spend all this money on help. I feel like I just have to get some relief or go literally crazy. I went thru all the paperwork for the VA and we are above the financial limit. Because my hubby wasn't injured or wounded in service and because he was in Germany not Vietnam they told me he wasn't eligible for any benefits. I was very disappointed because I was led to believe he would be able to get a few hours a week of in home care giving. Sometimes nothing seems to work out and everything is difficult. |
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| I'm so sorry you are feeling this way. Have you considered counseling for yourself. This may help you cope with this very difficult situation. I am starting counseling next week and I'm hoping that this will help me deal with our lost relationship and help me to recapture some life for myself. |
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| I agree with Checkmate. I have been in counseling for several months and it really does help. My thoughts are with you |
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I've thought of going for counseling or at least attend the spouse's caregiver group meetings but I just can't get away from my hubby. He literally gets very upset and cries out for me to come home. I'm always afraid that he will go into a dementia episode where he is just out of it and no one can calm him down, including me. That hasn't happened for about a year and I'm hoping it won't ever happen again. It is very scary. I'm hoping that in another few weeks he may be so comfortable with the caregiver that she can keep him entertained with exercise and games that he won't miss me. I need to get out and away so I can have some joy in my life again, maybe even be able to laugh again. God how I love him for 40 years, but PD has made our life so full of stress and sadness. It will never be different now and I will just have to adapt to this life and hope I can do it in a loving way. |
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| Point to ponder - Are two unhappy people better than one? If you need the therapy or counseling, you go get it. You will feel supported and possibly be better able to cope. He will be unhappy no matter what. Get what you need to survive. Your being there 24/7 can not protect him from the ravages of this disease, but you can protect yourself so you are able to provide him the care he requires. |
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I agree, you have to take care of yourself or you cannot help anyone else. I would explain to my husband where I was going and why, and that it was essential or I would not be able to take care of him at home. Even if he can't understand it, you will have tried. And the last poster is right: your being there 24/7 won't save him from PD. It will, however, jeopardize your ability to take care of him at home as well as your own health. Several years ago someone posted about the agonizing decision of how to know when it is time to place your loved one in a facility. This is something no one wants: all of us want to care for our husband, wife, grandparent, uncle, etc. in our home forever. But unfortunately it's not always possible. Someone posted that if you thought about all of the people in a facility that are there to help care for a resident in a facility, times THREE because they work in shifts of 8 hours (three 8 hour shifts in a day), you would essentially be trying to do the work of over 20 people! (nurse, nurse aid, maid, cook, someone doing laundry, personal assistant to help shower, use the restroom, etc.) No wonder we are exhausted! I hope you are able to get the help you need. Please keep us posted 
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I've been thinking about this for the past few weeks. I love my hubby of 40 years very much. I lose my patience with him and want to scream sometimes. But he's my hubby and I love him and I would never hurt him. I can imagine what a person in a facility might do when they have several difficult patients to care for and they lose their patience. Do they shove them down on the chair or bed when they just stand there forever and don't cooperate? Do they let them go to bed with wet depends? Do they care if they can't decide if they want to go to the bathroom until they've gotten them in bed? It's scary to think how they may be mistreated. Today I had the caregiver for 4 hours and thought I could go out and take care of a few errands. I asked my hubby if it would be okay to go out and do the grocery shopping. He said okay and off I went. He was resting in bed and so I thought maybe he would sleep while I was gone. The caregiver said he woke up several times and she assured him that I was going to be back soon. After the caregiver left and I got him up he was in a really wild state. Yelling "get me out of here", "leave me alone", "get away from me". I had a difficult two hours trying to get him calmed down. I think that me being gone brought it on. Oh.... it is what it is. I'm going to try and attend the spouse caregiver group meetings. Then the people will all know what it feels like to be a caregiver. Counselors sometime dish out advice but have no idea what it's like. |
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| This sounds like what happened with my husband several years back. His neurologist at the time increased his sinemet. He started having hallucinations. He didn't know who I was and chased me out of the house. He saw people in the driveway trying to steal the car. It was such a frightening time. I have since changed drs. He now has a neurologist who specialty is PD. He said that my husband was very sensitive to the sinement and that was the cause of his hallucinations. He prescribed Clozapine. It has really helped. He has an occasional hallucination but they are not frightening. |
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Flowers, One of the things about a good facility is that they have more than one good person assigned to your loved one. In other words, there are "teams" of staff who help, so if the resident is being difficult, indecisive, confused, whatever, there is help for the staffer: it doesn't all fall on one person to handle (like it does at home, right?!!). That's a good facility, though. They are expensive, because they pay staff well, have enough staff, and don't overwork them. It really sounds like you need help. I'm wondering if you left regularly, like every Friday when you have the caregiver, your husband might get used to your needing to get out and run a few errands? Or maybe leave more frequently, but for a shorter time, so he realizes you will come back and everything will be ok? I have read change is very difficult for PWP, and perhaps your husband is so used to you always being there that when you aren't, it's scary. Leaving frequently for short periods of time might help break that pattern enough so that you can get a break. Just a thought
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Flowers, I fully understand how you perceive life in an assisted living, but that truly is not the reality of a good one. Long gone are the days when a resident is ignored or simply shoved into the hallway to die. Now there is a great deal of competition between facilities and they strive to hire excellent staff and directors because they are accutely aware that you have multiple choices for care. I have said this before, but I was the Activity Director in an assisted living. We all were highly trained, but I was always impressed by the caregivers. They were loving, kind, and well versed in monitoring the residents' needs. We only had one who simply was transient and only "put her time in" and went home. She lasted about six weeks before she was let go. Although she was technically excellent, she had few people skills. Here's my "take" on this difficult time. It is common to question, to worry, and to have fears of the unknown. To anyone who is considering such a move, take a deep breath and drop in, unannounced to see how residents are treated, the conditions, what activities are planned, etc. My Director (the owner) said ANY facility should gladly permit these visits...then, if you are interested, you can schedule a meeting and lunch with a staff member for a tour! I did many of them myself! My own mother spent the last three years in an assisted living and loved it. I will, too, if I need to go. One last thing, the staff has seen it all. They are equipped to handle emergencies and know how to deal with difficult residents. The local EMTs and ambulances always responded quickly, too! Whatever you decide to do, good luck. If it were me, I would visit now the facility that could be your husband's future home. These decisions are best made before they are forced upon you. |
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Yes. Our OT (who after 4 years has become a friend) has urged me to look now at the available AL and memory care facilities, before the need is urgent. Luckily there are two very good ones nearby, one which is so lovely, small, well staffed, that I am now considering that my PWP might be happier there than at home. For example. Here at home, there is only me, or one hired caregiver, to give him attention, make his meals and clean up after them, help him shower, clean his teeth, dress, clean him up after he uses the bathroom, pour and manage his medications, help him communicate with his kids, find the music he wants to listen to, take him to doctor's appointments, cut his toenails, help him find his way from the family room to the kitchen, do his laundry, pay his/our bills, tend to his young daughter's college planning, and to attend to his wife's needs (that is to say, mine), and many more things than these. In the very nice local place (less than 2 miles from our house) there would be a full staff to do that, plus other people with whom to socialize, outings, PT on site, activities geared to his current cognitive status etc. etc. The staff in these places were happy to give me (and then his kids) a tour, and commended me for thinking about this before the need was at hand. I don't know whether/when this will be the path we take, but I am very very relieved knowing that I would not feel upset at his living at such a place. My big question is sorting out how long our long-term care money would last there. I have become more and more clear that I have a responsibility to love and care ABOUT my husband for all his days. I no longer think that my love for him is measured by the number of times I change his pants, give him a shower, or count out his medications. I hope I don't sound heartless. and I do know that we are enormously lucky to have an excellent long-term care policy (which he bought immediately after his diagnosis with PD) to fund these possibilities. VV |
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Things that are happening to your spouses are also happening to mine. Lately I am having difficulty getting the pills into him. I am on pins and needles every time I hand him the pills. Last night he needed 2 Sinemet and the pill that makes him sleep. He refused to take them and I even put them in some pudding, but he acts just like a child and won't open his mouth. I was trying to brush his teeth which I usually do, but I thought he wanted to try. I said "Here you do it and he reacted in a way he was going to hit me". I ran out of the bathroom and just left him and I cried.. He was up several times during the night but I just left him and slept on the couch in the living room. I just couldn't take it last night. And yet this morning he took his Parkinson's pills without any problem. I still have to get his daily pills into him, but he's sleeping in the recliner right now. If this continues I need to talk to the doctor. We have an appointment scheduled for the middle of September and the neurologist two weeks later. I wish there was a patch we could put on him instead of the oral pills, but I haven't heard of such a thing. |
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Lynnie, it is so frustrating when they don't want to take their pills. I've been having this problem off and on. The last pills of the day, at 8 pm, are his dementia pills and the bladder pill. It scares me when he refuses to take the Aricept because I don't know what I will be dealing with in the morning. Sometimes I've begged him several times before I got him to take them. One time he spit a pill all the way across the room! I really laughed at that it was such a shock to see. When he balks at taking his Sinemet I tell him okay then, you're going to start shaking and you won't like that. Or he won't swallow them and I ask him how they taste as they melt. He usually gets them down but it's just one more frustrating thing to deal with. I think there is a patch, ask your neurologist. I've heard some discussion about it. The newest thing with my hubby is his constant moaning and groaning starting at 2 in the morning and goes on and off for the rest of the night. I've thought about sleeping in the other room and getting a baby monitor (he can't get in or out of bed on his own) then realized I would still hear it! I've been shaking him a little and telling him to hush. It works for a little while then starts up again. We've started having him brush his teeth in the shower. I bought a shower bench that swivels and slides into the shower and has arms on it. It's made giving him a shower safe and so much easier. I've never cried so much in my entire life as I have these last two years. I pray for patience and try to put myself in his place. We just have to do the best we can for as long as we can. BIG HUGS to you. |
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Thanks flower for your input. I know I'm not alone in this situation we are in. I cry a lot too, and sometimes it helps, but have to watch myself I don't make myself sick. I don't know if they realize how it's affecting us Fortunately I don't have to shower him anymore. I have a PSW come twice and week to shower and dress him. Most of the time it's a man, but every other Sat. it's a lady. Today I had to help her get him on the transfer seat and get him off. Today the drool was coming out like a leaky faucet. I kept wiping and wiping it up. He hates when I wipe it but it was getting on his clean shirt again. He has Botox for the drooling but it's not working so I think I discontinue it and see what happens. I'll ask the doctor about the patch. I know they mentioned a tap on his body where you inject the medication if they let you do that, but it's also the heart, and warfarin and Aircept that needs to be taken. I do have help once a week (maybe you've read other blogs I've written) He also goes to the Day Away Program at the Alzheimer's Society which I think he enjoys. At least I've been able to get him there lately so I hope that continues as its good for him to be around other people and activities. I am sorry you don't get proper sleep. I know how that feels. My husband takes quetiapine 25 mg. at night which help, if he takes it, that is. Would ear plugs help you if you husband makes that noise. You could still feel him moving around if he needed to get up. I also thought about sleeping in another room, but wouldn't know if he needed to get up to the bathroom. I have been putting product on him at night and if we go away I have him wear them. He doesn't seem to mind, thank goodness. I hate the thoughts of putting him in a long term care yet, but I need to think of myself and my health. He is only 69 so pretty young for it. Each day is different as you know. Our life isn't our own anymore........... |
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| Flowers? You mention the newest thing with your husband is constant moaning and groaning beginning around 2 A.M. also his last med's of the day are 8 P.M. If I may ask when is his last dose of Sinemet? The reason I ask is with the moaning and groaning seeming to begin at a certain time and You telling your husband if he doesn't take the Sinemet he will start shaking. Is his moaning a ohh or oww or more a sound than verbiage? or words? I am thinking if more of sound than words it may be tremor of the diaphragm or even vocal cords. I'm just guessing here as it can be counted on occurring around the same time each night. If his dopamine levels wan it might be. You might want to run this by his Neurologist. I'm not a doctor so check with his the doctor might want to try a small dose of Sinemet at bed time to see if it stops. If they don't want to try well they are his doctor and know him better than I do. (but it is worth running it by the doctor). Meanwhile you might find comfort that the moaning may not be because or pain or discomfort but may be another facet of this damn disease. I hope you get it figured out soon. |
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Al, thank you for your reply. My hubby takes 2 Sinemet every 3 1/2 - 4 hours and takes his last 2 Sinemet between 4 and 5 pm. Depending on when he gets up in the morning. The prescription was originally for 2 pills 4 times a day. I've been a little hesitant to give him the last 2 Sinemet at bedtime because when I was he seemed to be having more delusions. I sometimes give him 1 Sinemet at 7 or 8 pm if he's shaking, but that isn't too often. His Neurologist said he didn't think the 4th dose at night would do much good since he would be sleeping. I might try giving him 1 at bedtime and see if the moaning and groaning stops. Never words just the noises. It's kinda like what we have him doing for speech exercises where he says "AHH" real loud for as long as he can. I sometimes think he's practicing .
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| Yes there are many Neurologists who say that same line the last dose before bed doesn't do much good because the patient is sleeping and not needing it. Many however are realizing we just might need it especially because our autonomic nervous system also runs on the dopamine. Everything we take for granted such as breathing, blood pressure, heart rate, contracting and expanding the pupils in our eyes just everything. And while it is true we may be able to get along with less while sleeping because we are not trying to carry on daily tasks such as walking, talking moving about, still as the disease progresses and less dopamine is produced more dopamine must be introduced into our systems. it is a confusing balancing act. |
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| Hear Al....he tells from experience. My husband is in the hospital for infections not related to his PD....and I have to keep reminding them if he does not get his Sinemet 25, he will not be able to use his hands to hit the call button...and just pee or poo because he can't get help. That wakes the staff up to the issue that prevention is better than cleaning up messes. |
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| Adding another concurrence to the nighttime pill. Our neuro just advised adding another pill at 2-3 am (get-up-and-pee time) so that he isn't so wracked at 5 when he gets up for the day. Without it, the morning dose takes longer to catch up and the pain and stiffness are nearly too much to bear. |
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| For what it's worth, they do make a Sinemet ER, extended release, that my husband takes before bed as his last pill of the day, the purpose of it is to last all night, so that his symptoms stay under control through the night, and he can get up to pee or whatever. They say it lasts about 8 hours, or is supposed to. Seems to work OK, for what it is supposed to do, he is able to get up on his own during the night while on it, but he has pretty bad brain fog during the night (he'll be able to get up, but then can't find the restroom), and it doesn't help with the brain fog, but we take what we can get. He doesn't take it during the daytime because it tends to make him sleepy. But it's just an idea for meds wearing off in the night. |
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Last night at bedtime I gave my honey his 2 Sinemets to see how the moaning and groaning went. I had to laugh because instead of the moaning and groaning he talked and acted out his dreams, moving his arms around and kicking his feet. That was what he did most nights over the last 40 years but in a much more active way. I always thought it was Rapid eye movement (REM) sleep behavior disorder which is a sleep disorder in which you physically act out vivid, often unpleasant dreams. Little did I know that it was the precursor of Lewy body dementia and Parkinson's disease. We tried the extended release Sinemet a few years ago but it made him groggy and he slept much more. We didn't try it just at night. We go to the neurologist this month and I might ask him about it. |
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| I don't think I will give my honey any Sinemet at night anymore. The reason we cut back on the fourth bedtime dose a few years ago was because he seemed to be having more hallucinations and delusions. These last two nights shows signs of that again. It's nerve wracking when he thrashes around and yells. I guess I'll just have to listen to the moaning and groaning. At least I don't have to worry about getting bopped by thrashing arms. Too much Sinemet in the system. |