answer is simple - the juvenile behavior is one of the first signs that dementia is setting in. Don't 'deal' with the behavior, ignore it. And the plans for the move are now in overdrive.... Thanks all.
I had a parent (father) that recently passed away from Parkinson's. Please message me if you need to talk. My mom is also a knitter, too. She knits in knitting circles about four times a week.
I want to mention something to you that may help or may not. I have hands on care of the cutest 3 1/2 with a disability on earth, every other week, and legal responsibility for a cherished 92 year old who is in memory care, doing quite well there.
My DH, who is a machine who will work himself way over the level of his care of himself, for the people whom he loves, and helps me care for, plods on, working 26 hours a day, and expecting the same of me.
He constantly tells me how WELL I’m managing to jump through all the hoops I have to jump through. I’ve been in the baby care schedule since Winter 2016, and the Geri care situation was added in Fall 2017.
Although I love both of my “clients” with my whole heart and soul, there is actually a life separate and apart from them THAT I WANT TO LEAD. My husband doesn’t really understand that part of me, and when he says that I’m doing a great job with what I’ve been dealt, I want to SCREAM, because there’s so little time to do anything that is MY STUFF, and if I wind up with SOME time, I’m usually too tired to throw myself into “fun” that I need so badly for balance.
Given your life situation, you probably should be acknowledging to yourself that you ARE doing a super job in an impossible situation. That’s where the conversation gets ridiculous, because even when you are willing to accept the fact that you do a great job, you’re most likely thinking “But when does it get better/easier/calmer FOR ME?” In my life, the answer always seems to be “Who knows??”
SO—- - - - GIVE YOURSELF the pat on the back, carve a little respite (with your finger nails?) from the chaos, and laugh hard at least once in a while, and NEVER EVER feel guilty (I fight this) when you actually are HAVING FUN.
I earn whatever fun I can scratch out, and YOU DO TOO.
After my husband was diagnosed - 15 yrs ago - I discovered a forum for PD caregivers online. Joined it, learned buckets. Most important lesson - always - MUST take care of myself, must take time away from it to do things that are important to me, are fun, pleasurable. If not, I can’t be a good caregiver. As the PD has progressed that simple rule has become more difficult to follow. Last year I made time to get away and go fishing. Didn’t catch anything, but got a lot of time on the water out of touch with PD. This year fishing is going to be a bit harder to do, so I changed courses and am enrolled in a photography class/challenge online. Bought a good camera, learning to use it and working to keep up with the weekly assignments. The change in focus helps clear my head, and gives me a lot of pleasure. Husband no longer able to be of comfort, but the kitty curled in my lap purring at megadecibels is more than compensation. She doesn’t resist, only complains when the food dish is empty, and gives love without hesitation or question. Weekly knitting circle is my outside activity. I am okay most of the time, have enough support from biweekly therapist and tech/social worker who gives me TMS treatments 2x week. I cry at least once a day, therapeutic, feel hopeless off and on, alternate between “how will I live alone” and making plans to celebrate life with travel and such when he is gone. Tough it out on bad days as best I can, enjoy the good ones. Overall.... focus on the good that will come from the move.
Have you talked to Medicaid as you becoming a Community Spouse? That may change that being over 500 a month. Also, there r trusts where the overage goes into them and when he passes, it reverts back to Medicaid.
This is something that I don't know about. As we are only looking at 6 months or less here I will look into it when we get to Kansas. Thanks for the heads up!
So for all intents and purposes, you are trying to strike a balance among your husband’s issues, your issues, the amount of meaningful help you can access as quickly as possible, and the reasonable ability of your son to have a positive part of the whole process.
Will YOU yourself feel better “at home” in Kansas? Your previous progress towards identifying, acknowledging, and establishing management for your depressive illness seems darn near heroic, so will YOU be able to make connections to the services YOU need and “hit the ground running” when you get home?
Will your husband’s current medical staff be able to pre-establish meeting his needs for him as well?
Can you streamline the packing/closing quarters/moving process in Idaho and when you arrive in Kansas? Do you have help organized on both ends of the process?
If your husband was given the responsibility for deciding about the feeding tube, and thus is presumably cognitively at least relatively responsible for his conduct and behavior, is it possible that he’d accept some intervention with a trained counselor concerning his interactions with you?
Can you list specific objectionable actions/comments/gestures that you characterize as “juvenile” so that both you and he (and potential counselor) could address them systematically, and also as a way of venting for yourself?
You are a courageous and intelligent woman, and you have addressed your situation with more grace and strength than many would be able to do. Hoping that these thoughts will help you continue to move towards decision making that works as well as possible for all of you.
Wow, lots of questions, all good. Thanks for the kudos. Yes, going home to Kansas is truly GOING HOME. When we left 15 yrs ago thought we were returning to the Puget Sound area (Boeing jobs, Wichita and WA). But we had been gone from what we thought of as home for 25 yrs, and Lordy how it changed. Too expensive, too many people and all on the road at the same time. When hubby finished his job at Boeing, we looked for somewhere to live - that we could afford, in PAC NW, with decent medical. Found Boise. BUT.... hadn’t looked far enough into what late stage PD was going to ask of me, the sole caregiver. We have been here 10 yrs, and I am very much alone. Love the place, but can’t do the job well. The 25 yrs in Wichita we built a large circle of friends, and I have kept in touch with many. All say the same thing - I want to help. Last month I had to take a break, or else I would have completely broken. 4 days R&R in psych ward. Came home ready to carry the load, but with the caveat that we do the final stage surrounded by friends. We had talked last year about making this move, but when he failed swallow test and had tube in all got put on hold. One night I sat and watched him breathe, thinking every one was his last. He pulled thru, but it scared me to death. So the move is back on. Today I learned that I could continue Neurostar TMS treatments there, in my previous shrink’s office! Better yet, KU Med school/ctr has a MDS Parkinson’s center. I have been given a huge gift with just those two pieces of information. called and spoke to current neuro’s staff, they agree that his meds need re-evaluation, said that juvenile tantrums are part of the process, indicating loss of cognitive skills and early dementia. That hurt a bit and at the same time told me that I could get thru this. the move is work, but having spent my first 18 years being hauled across country by my dad searching for a better job it is no big deal. I can purge stuff, pack boxes and sell this house, have moving van collect boxes and furniture and be on the way. Goal is to be there for the 4th of July.....
I am glad that you are going home where you have support.
What did you do with your kids that where misbehaving? I think that sometimes we just have to ignore certain behaviors when dealing with someone that can not help themselves. The less said the sooner mended. I say that because a 5 year old pulling stunts is usually wanting attention if all of their body needs have been met and they are still acting up.
My dad has always acted like a spoiled kid when he wasn't getting his way, so I don't know what is disease and what is personality, so I treat everything as disease, that way I don't get upset and participate in his nonsense.
Good luck finding the balance to cope with his 5 year old self.
Safe travels on your move. May God be ever present and give you strength.
Dementia goes along with Parkinson's. Sorry to say, not much you can do about it. You probably can no longer reason with him. His attention span is going. Give us some examples of acting like a 5 yr old.
I would think hard about moving. Your husband may need Medicaid sooner than you think. If you move, that process could be slowed down. Medicaid is a state program and doesn't go over state lines. And the move, how will that effect your husband mentally?
We don’t qualify for Medicaid. Pension plus SS $500 too high. Husband wants to make the move. Throws temper tantrums like a toddler. If I ask him to repeat what I just said it comes out totally different - little semblance to what I actually said. Fortunately this isn’t happening very often, but it is increasing, which makes the need for help that much more of a concern. Help I can get there, not here....
Son was living here, but his SSI/SSDI didn’t come close to covering his cost of living here. He had to move back to Kansas 1 1/2 yrs ago - it is where he grew up. By making this move WE are moving “home” as well. Our combined pension/SS disqualifies Medicaid. We have a wide circle of friends back there who want to help, not so here. I am willing to do the work, as I want out of here. But his increasing juvenile behavior is driving me nuts. Burnout and I are dancing a delicate dance, with the help of a terrific therapist and shrink I am holding my own. When husband is age appropriate he is a huge help. But these episodes.....
Apparently, from answer to you below, there is more information somewhere. With the placement of the tube for feeding you have gone into what are honestly "heroic measures" to prolong this journey for your husband that has one inevitable conclusion with not a lot of upside in the amount of suffering. I am assuming that before it came to this you and he had discussions that led to your decisions to fight for every second of life no matter how costly. I am so sorry for all the pain and suffering and can only wish you good luck; hope there are others out there with some answers that might help more. I am for myself not even certain that you are still attempting in home care. Is there any plan for hospice in future?
The decision to go with the feeding tube was entirely his. Until he had the swallowing test done - and the failure was deemed total - his one fear was having the tube. But when the neuro said that without the tube his survival would be a month or two, with it a year or more, his attitude changed. He is now 6 months since it went in, has gained back the 15 pounds he lost in the few months before the test, and generally is doing well. But it has been 15 years since diagnosis, and I realize that time is something that he is starting to run out of........
So you are moving to Kansas from Idaho to be with your son...is it possible for your son to move to you? It would be far less work at a time when you have less reserves!
Also, by going to another state you may delay any social services help / Medicaid, as it sounds like he may soon need placement in a care facility so that you don't completely burn out and impact your health permanently. If you do move make sure to start contacting social services about in-home assessment for help right away. Please think carefully about this move. I realize talk is cheap but burnout is very costly.
Thanks all.
I have hands on care of the cutest 3 1/2 with a disability on earth, every other week, and legal responsibility for a cherished 92 year old who is in memory care, doing quite well there.
My DH, who is a machine who will work himself way over the level of his care of himself, for the people whom he loves, and helps me care for, plods on, working 26 hours a day, and expecting the same of me.
He constantly tells me how WELL I’m managing to jump through all the hoops I have to jump through. I’ve been in the baby care schedule since Winter 2016, and the Geri care situation was added in Fall 2017.
Although I love both of my “clients” with my whole heart and soul, there is actually a life separate and apart from them THAT I WANT TO LEAD. My husband doesn’t really understand that part of me, and when he says that I’m doing a great job with what I’ve been dealt, I want to SCREAM, because there’s so little time to do anything that is MY STUFF, and if I wind up with SOME time, I’m usually too tired to throw myself into “fun” that I need so badly for balance.
Given your life situation, you probably should be acknowledging to yourself that you ARE doing a super job in an impossible situation. That’s where the conversation gets ridiculous, because even when you are willing to accept the fact that you do a great job, you’re most likely thinking “But when does it get better/easier/calmer FOR ME?” In my life, the answer always seems to be “Who knows??”
SO—- - - - GIVE YOURSELF the pat on the back, carve a little respite (with your finger nails?) from the chaos, and laugh hard at least once in a while, and NEVER EVER feel guilty (I fight this) when you actually are HAVING FUN.
I earn whatever fun I can scratch out, and YOU DO TOO.
Husband no longer able to be of comfort, but the kitty curled in my lap purring at megadecibels is more than compensation. She doesn’t resist, only complains when the food dish is empty, and gives love without hesitation or question.
Weekly knitting circle is my outside activity.
I am okay most of the time, have enough support from biweekly therapist and tech/social worker who gives me TMS treatments 2x week. I cry at least once a day, therapeutic, feel hopeless off and on, alternate between “how will I live alone” and making plans to celebrate life with travel and such when he is gone.
Tough it out on bad days as best I can, enjoy the good ones.
Overall.... focus on the good that will come from the move.
Will YOU yourself feel better “at home” in Kansas? Your previous progress towards identifying, acknowledging, and establishing management for your depressive illness seems darn near heroic, so will YOU be able to make connections to the services YOU need and “hit the ground running” when you get home?
Will your husband’s current medical staff be able to pre-establish meeting his needs for him as well?
Can you streamline the packing/closing quarters/moving process in Idaho and when you arrive in Kansas? Do you have help organized on both ends of the process?
If your husband was given the responsibility for deciding about the feeding tube, and thus is presumably cognitively at least relatively responsible for his conduct and behavior, is it possible that he’d accept some intervention with a trained counselor concerning his interactions with you?
Can you list specific objectionable actions/comments/gestures that you characterize as “juvenile” so that both you and he (and potential counselor) could address them systematically, and also as a way of venting for yourself?
You are a courageous and intelligent woman, and you have addressed your situation with more grace and strength than many would be able to do. Hoping that these thoughts will help you continue to move towards decision making that works as well as possible for all of you.
Hugs.
So the move is back on. Today I learned that I could continue Neurostar TMS treatments there, in my previous shrink’s office! Better yet, KU Med school/ctr has a MDS Parkinson’s center. I have been given a huge gift with just those two pieces of information.
called and spoke to current neuro’s staff, they agree that his meds need re-evaluation, said that juvenile tantrums are part of the process, indicating loss of cognitive skills and early dementia. That hurt a bit and at the same time told me that I could get thru this.
the move is work, but having spent my first 18 years being hauled across country by my dad searching for a better job it is no big deal. I can purge stuff, pack boxes and sell this house, have moving van collect boxes and furniture and be on the way. Goal is to be there for the 4th of July.....
What did you do with your kids that where misbehaving? I think that sometimes we just have to ignore certain behaviors when dealing with someone that can not help themselves. The less said the sooner mended. I say that because a 5 year old pulling stunts is usually wanting attention if all of their body needs have been met and they are still acting up.
My dad has always acted like a spoiled kid when he wasn't getting his way, so I don't know what is disease and what is personality, so I treat everything as disease, that way I don't get upset and participate in his nonsense.
Good luck finding the balance to cope with his 5 year old self.
Safe travels on your move. May God be ever present and give you strength.
I would think hard about moving. Your husband may need Medicaid sooner than you think. If you move, that process could be slowed down. Medicaid is a state program and doesn't go over state lines. And the move, how will that effect your husband mentally?
Throws temper tantrums like a toddler. If I ask him to repeat what I just said it comes out totally different - little semblance to what I actually said. Fortunately this isn’t happening very often, but it is increasing, which makes the need for help that much more of a concern. Help I can get there, not here....
Also, by going to another state you may delay any social services help / Medicaid, as it sounds like he may soon need placement in a care facility so that you don't completely burn out and impact your health permanently. If you do move make sure to start contacting social services about in-home assessment for help right away. Please think carefully about this move. I realize talk is cheap but burnout is very costly.