@Dee Thank you for your feedback. Stubborn is not the word!! My husband is 73 I am 55. I have been more than supportive of him, he has been offered therapies over the 10 yrs of his diagnosis and refused it all. I have never missed an appointment with him, and the doctor is very aware of his attitude. We just had an appt. a week ago and the doc told him there is not much he can do for him he needs a psychiatrist visit again and needs to take the pills that doc. prescribes. I am so embarrasses to go to the appt anymore because he says things are fine and then I have to sit there and set the record straight. The doctor I'm sure has seen this before. I totally understand this disease and what it does and I try so hard to keeps things going and my husband puts forth no effort. Thank you for listening...
Marylou, Sorry it is so hard for you! Maybe a relative of your husband could suggest he gets the meds he needs. I know from my experiences with Mom, they can be very stubborn and irrational about what is happening to them. I'm assuming your husband is younger and having a hard time coping with the knowledge of what lies ahead for him. If you go to his neurologist appointments with him, maybe you could discuss what is happening and they could suggest counseling to help him or both of you to cope with your situation. I can see your dilemma and hope thingd will get easier for you soon!
Thank you Jeanne I do appreciate your suggestion and will get to work on that. I do agree with not having my son pick up on the negative behavior my husband sometimes has at this point. It is very hard to explain to my son the difference as to why I accept it from his Father but I also told him it's not going to go on forever here. I am working very hard on my son's social skills and I don't need him to be around negativity. Thank you again for listening and voicing your opinion. It is much appreciated.
marylou1957, I was not suggesting placement as a solution for now, but to make your husband aware that you cannot be his 24/7 constant companion and if it ever came to that there would have to be a different solution.
And never say never. Having Dad someplace else would be very hard on your son. But having Dad violent and aggressive or very demanding and disrespectful of his mother would be very hard, too. With dementia we never know what the future holds. A backup plan that you sincerely hope you never have to use is not a bad thing.
I understand and there is no shame but I have a 13 yr old son with Asperger's and that would just rip my son apart if his father wasn't living with us and we had to go visit him elsewhere. I appreciate I can be on here and have people that I can talk to that understand but I have so much to think about. Thank you so much to all of you for being here.
Jeanne is so right! We all need to recognize when we can no longer provide care at home. For some it comes sooner than for others. I'm still hanging in after 5 years, but it is slowly getting to the point that my mind and body can't go there anymore. There is no shame in placing a loved one when the time comes.
marylou1957, I suspect this isn't going to win me any popularity contests, but that's never been my goal anyway, so here goes ...
Start looking for Assisted Living or some other type of care center for your husband. Start looking into how you would pay for this. Do this very seriously and conscientiously. Contact Social Services or the PD association in your area or the state Agency on Aging -- whatever resources you need to have a plan in place.
Then sit down with your husband when he is in a calm mood and go over the plan with him. Tell him that you hope you won't have to put this plan into action and that he can stay here with you and your son for the rest of his life. But that you know you cannot provide 24/7 care, that you cannot keep him happy, and that you need to be a mother and an individual as well as his wife and caretaker. Promise that you will never abandon him, that you will also advocate for the best care possible, and will spend time with him often, no matter where he is. But you needed to have a Plan B in place so you'd know what to do if/when his needs increase.
I suspect that you may be right that the plan in his head is for him to get to the point where you have to be here 24/7 so he can keep an eye on you. So it is a kindness to be very upfront with him now, before that happens, and he goes to a lot of trouble to execute a plan that will backfire on him.
Don't do this until you have actually researched it and you can present a specific place and a way to pay for it. Don't do it with any kind of accusations or "if only you would" or with any hint that this would be a punishment. This is just the matter-of-fact plan you have for how you will cope if/when his disease requires more care than you can give him.
By the way, my husband was never controlling, either before or after he developed Lewy Body Dementia, and he didn't try to keep me from being away sometimes. So my reasons were different, but in calm, lucid moments I several times promised him that I would never ever abandon him, but that I couldn't say I'd never place him in a care center. We didn't know what the future held, and I would always want him to have the all the care he needed, even if I couldn't provide that care at home. This was in no way a threat. It was just reality for us. As it turned out, with in-home care and at the end hospice he died in our own bedroom, holding my hand. I am not about putting sick spouses out of sight, but I also know that well spouses need to look after their own needs, too.
My Mom has PD and Dementia and she cries a great deal.. She has been placed on Carbidopa for the PD and Donzipezil for the Dementia both of which seem to help but her disease is getting worse on a daily basis.. She lives with my husband and I and our 3 young children which makes for days that are very hard on both myself and my family. You need to get a Great PD Neurologist to help you. Our's saved my Mom's life 2 years ago. Aside from the PD and Dementia she has bladder issues and the medication she was on with the PD medicine at the time was killing her. Hope this helps.. Best wishes..
I have been caring for my mom for 5 years 24/7 due to PD and dementia. She was a mess for a long time as we had no clue what was wrong. Crying, seeing things, anxiety attacks. All of these are a part of the disease and you need to get your mom to a neurologist that specializes in PD and they should be able to help find an antidepressant that will work for your mom. Mine is on PD meds, an antidepressant, aricept and namenda for memory and zanax for anxiety. She needs seroquel to sleep at night also. She is in the late stages of dementia and can do very little for herself. I still have her at home and she does go to daycare 4 days a week. I know this sounds like a lot to deal with , but the more you learn about the disease, the better armed you will be to keep your sanity. Definitely make sure she gets on a memory med right away. They really do help. Mom is pretty far gone, but if we take away her aricept or namenda, she is totally gone! Call her doctor and try to get them to refer you to a neurologist that specializes in PD patients. That will be your best bet to start. Do not let her regular doctor talk you out of it. It's a necessary step to help you and your mom. Good luck!
Jeanne my husband does take 2 meds for the pd. His problem is he can but doesn't get up from the chair. He is so angry inside because he doesn't want me going out of the house. He tells me he is being spiteful towards me because I do go. I have a girl that comes in to sit with my son(he is on the Autism Spectrum) to give me a break and my husband doesn't like that. He has already told me he doesn't want to go anywhere and I told him I wasn't going to sit in with him. He doesn't bother with us when we are all home. My son gets inhome therapy and my husband doesn't believe in that either, he calls it a waste of time so I guess I can figure on him not going for himself. He has been to therapist before and after 2 visits to probably 3 different ones he refused to go. I think the plan in his head is for him to get to the point where I have to be here 24/7 that way he can keep an eye on me. I know our 13 yr old son keeps me young and he tries to do the same for his father but he won't let him. My son is very high functioning and very intelligent and also tries to help his Dad, it's just a sad situation.
Marylou1957....is there some way you could mask the medication in food? Just a thought. I know when mom had a hard time swallowing some medications..the Hospice nurse suggested grinding it up and putting it in something like pudding or applesauce? I'm sorry...I hope for better days for you. God Bless
marylou, is he willing to do for your son? This must be soooo frustating for you! What is his reason for not taking the medication? Does he take other meds?
My husband was prescribed an antidepressant after a head injury. He objected, saying he wasn't sad and he couldn't be depressed. The psychiatrist explained that his depression wasn't coming out as sadness (more apathy) and he explained what part of the brain was injured. He said we were very lucky that most areas of the brain injured in the fall were back to functioning well or their functions had been taken up by other parts of the brain, but it appeared that this particular brain part was going to need some chemical help, and it might need it for the rest of his life.
I'm so glad that my husband went along with this. That simple pill literally gave me back my husband (for 10 years, until he developed dementia). He remained on antidepressants the rest of his life.
If your pancreas isn't functioning right, you take insulin. If your brain isn't functioning right, you take antidepressants. What's with these men who make a big deal out of it?
Jeanne My husband was on a med for depression but he refused to take it. After seeing the pd spec this past week he told my husband he needs to go back on it if he wants to feel any better. Its so hard for me because we also have a son on the autism spectrum and it doesn't help the situation when my husband sits around looking so sad. I tried to tell him to do it for our son. Thank you for your response as well.
I agree with the depression. My husband is like that also has PD. He was told to go to a Psyc Dr. but he refuses. I wish he would go because there are a few different meds that would help him:(
I don't know about the Parkinson, but I do know about depression and that makes you cry alot. Could she be depressed due to the diagnosis? Talk to her dr., maybe she needs something for the depression.
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And never say never. Having Dad someplace else would be very hard on your son. But having Dad violent and aggressive or very demanding and disrespectful of his mother would be very hard, too. With dementia we never know what the future holds. A backup plan that you sincerely hope you never have to use is not a bad thing.
Start looking for Assisted Living or some other type of care center for your husband. Start looking into how you would pay for this. Do this very seriously and conscientiously. Contact Social Services or the PD association in your area or the state Agency on Aging -- whatever resources you need to have a plan in place.
Then sit down with your husband when he is in a calm mood and go over the plan with him. Tell him that you hope you won't have to put this plan into action and that he can stay here with you and your son for the rest of his life. But that you know you cannot provide 24/7 care, that you cannot keep him happy, and that you need to be a mother and an individual as well as his wife and caretaker. Promise that you will never abandon him, that you will also advocate for the best care possible, and will spend time with him often, no matter where he is. But you needed to have a Plan B in place so you'd know what to do if/when his needs increase.
I suspect that you may be right that the plan in his head is for him to get to the point where you have to be here 24/7 so he can keep an eye on you. So it is a kindness to be very upfront with him now, before that happens, and he goes to a lot of trouble to execute a plan that will backfire on him.
Don't do this until you have actually researched it and you can present a specific place and a way to pay for it. Don't do it with any kind of accusations or "if only you would" or with any hint that this would be a punishment. This is just the matter-of-fact plan you have for how you will cope if/when his disease requires more care than you can give him.
By the way, my husband was never controlling, either before or after he developed Lewy Body Dementia, and he didn't try to keep me from being away sometimes. So my reasons were different, but in calm, lucid moments I several times promised him that I would never ever abandon him, but that I couldn't say I'd never place him in a care center. We didn't know what the future held, and I would always want him to have the all the care he needed, even if I couldn't provide that care at home. This was in no way a threat. It was just reality for us. As it turned out, with in-home care and at the end hospice he died in our own bedroom, holding my hand. I am not about putting sick spouses out of sight, but I also know that well spouses need to look after their own needs, too.
Mine is on PD meds, an antidepressant, aricept and namenda for memory and zanax for anxiety. She needs seroquel to sleep at night also. She is in the late stages of dementia and can do very little for herself. I still have her at home and she does go to daycare 4 days a week.
I know this sounds like a lot to deal with , but the more you learn about the disease, the better armed you will be to keep your sanity. Definitely make sure she gets on a memory med right away. They really do help. Mom is pretty far gone, but if we take away her aricept or namenda, she is totally gone!
Call her doctor and try to get them to refer you to a neurologist that specializes in PD patients. That will be your best bet to start. Do not let her regular doctor talk you out of it. It's a necessary step to help you and your mom. Good luck!
My husband was prescribed an antidepressant after a head injury. He objected, saying he wasn't sad and he couldn't be depressed. The psychiatrist explained that his depression wasn't coming out as sadness (more apathy) and he explained what part of the brain was injured. He said we were very lucky that most areas of the brain injured in the fall were back to functioning well or their functions had been taken up by other parts of the brain, but it appeared that this particular brain part was going to need some chemical help, and it might need it for the rest of his life.
I'm so glad that my husband went along with this. That simple pill literally gave me back my husband (for 10 years, until he developed dementia). He remained on antidepressants the rest of his life.
If your pancreas isn't functioning right, you take insulin. If your brain isn't functioning right, you take antidepressants. What's with these men who make a big deal out of it?
Maryrlou, is your husband seeing a Parkinson specialist? I'm surprised that doctor won't prescribe what is needed? (Or is he only seeing a GP?)