For those who care for someone with Parkinson's disease
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I went to visit my husband tonight at the long term care home he has resided in for over a year now. I visit him every night after work and help get him to bed. His health has been deteriorating over the last seven weeks. He first became confused and I was hoping it was short lived and as a result of been kept inside because of covid restrictions. But as the weeks go by he has lost the ability to stand and transfer from his wheelchair to his recliner. Tonight I could not get him to move and needed help putting him to bed. His voice is a whisper and tonight for the first time he found it hard to swallow his meds. I feel like the bastard Parkinson’s has got him. He has an appointment this Monday with the neurologist but it is a 90 minute car ride not to mention trying to transfer him to the car. I fear that we are not going to make that appointment. It’s a scary place to be. |
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| Prayers for you both. I hope you can make the appointment Monday and that the neurologist has the skills necessary to help your husband at this stage of PD. (Insert Hug here) |
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I'm so sorry to hear this. All you can do is love, love, love him and let him know you are there. Hold his hands, let him hear beautiful and familiar music, tell him what a wonderful life you have had with him and how blessed you were to have had him in your life, even snuggle him in bed if they will let you. I hope that you are able to get him to the neuro and he is able to help. From what you say, though, it sounds like the neuro may recommend hospice. I found that the referral to hospice was a huge adjustment in thinking for me, and to have to accept. I tried to stay strong for my husband (and kids), all the way through. I knew I could fall apart later. Maybe that can help you 
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I am so sorry to hear that your husband is having more problems. I've been where you are now and I know it isn't easy. If you are still going to the neuro, I hope you have another person to help you get him out of the car to the wheelchair. Don't try to do everything yourself. Also is he having any physio at the nursing home? He needs to have some kind of exercise even if he can't walk. If you could be with him when they do the exercises, ask if there is something you could do when they aren't around. I know they only did it twice as week when my husband was in Long Term. At first they were getting him up to walk, but only for about 15 minutes, but then the therapist said he was declining so they didn't get him up walking. I hated that part and from that time on he was declining even more. So it's important to kept him more mobile if you can. I also know how hard it is for their speech. I think if you try to engage him in conversations, then it could help with his speech. My husband had speech therapy but that was before he went into LT. Take care and I know how hard it is being a caregiver. My husband had PD for 12 year and I know how hard it can be for you. I pray things go well at the doctor's. LYNN |
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Thank you everyone your words mean so much to me because I know you can really identify how I am so heart broken. He is not well enough and too weak for the journey to the neurologist. To be honest I don’t think they can do anything at this point. He needs help with everything and he is not eating enough and sleeping most of the time. He is still taking his meds. The LTC is allowing our children to visit (because of covid they were not allowed). Our son came today he is 17 yr old and has been angry with his Dad but today made his peace with him and hugged and loved each other. Our daughter also came and made him smile as she always does. I am grateful for this. I was hugging my husband and we both told each other how we loved each other he smiled and his old cheeky self said “I’m not done yet” lol Most of the time we have no idea what he is saying which is very frustrating . I read all your replies and welcome all your advice and wisdom. Hugs |
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| Hi Guys. So we had a virtual meeting with a psychiatrist that knows Gerry well throughout our Parkinson’s journey. He has diagnosed Gerry with delirium which brought on a sudden decline in Gerry’s Parkinson’s symptoms. He explained that this is not a decline in Parkinson’s decease but an exasperation of the symptoms due to delirium.Gerry has had delusions in the past but seemingly delirium is different again, usually brought on by an underlying health condition and once this condition is resolved the delirium stops. However they have ran blood tests and UTI tests and nothing has been found. So it’s just a wait and see if anything else shows up that may signal what the problem is. Meanwhile his delirium is getting worse and he is eating very little, he has lost so much weight. Has anyone had this experience and was the underlying condition discovered? |
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Hi, I was wondering if one of your husband's medications is causing the delirium. Is he sleeping all night or problems getting him to sleep? I remember I went through a time when my husband wasn't sleeping all night and he got up in the night and I couldn't get him back to bed. He was hollering and I don't think he knew what he was doing or knew who I was. The Motion Disorder doctor put him on a medication that helped him to sleep better. I've never heard of Delirium in Parkinson's. My husband had hallucinations at certain times but not during the last few years of his life. I am so sorry you are going through this as I know how hard it can get for a caregiver. My prayers are with you. LYNN |
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| Checkmate so sorry to hear this. How long has your husband had P and how old is he? I am nosey but I find having this info helps me understand a little more of your experience (& I compare it to my experience too). My PWP is going to be 70 and was diagnosed in 2012. He has had prostate cancer since 2002 and has been on heavy meds for that too. He has not had delirium but lately he seems to be getting slower. This pandemic might be part of the reason. He is now super slow moving, talking worse (eating slower) and can hardly walk the crazy jack russell dog (I worry so much when he leaves with the little monster that barks at everything like crazy). He insists on walking him. I am getting more and more depressed about all of this. Don’t know if I will be able to handle all that is ahead. He says he will never let me help him in the bathroom. I wonder constantly about what our future holds. I have been praying so much. Just going to doctor appointments wears us both out. I will be 64 soon and am tired all the time. So many of you have been thru so much worse than what I am dealing with. What’s wrong with me? I really don’t want to take depression medications unless absolutely necessary. |