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Topic Parkinson's Dementia - how do you cope? Go to previous topic Go to next topic Go to higher level

By dkleinert On 2013.09.15 21:09
After my husband's recent double surgery, his dementia is so much worse. It has been 6 weeks now and it is worse than better.
From what I have learned here, it is non-reversible.
How do you cope and keep your sanity? How do you relate to the person who says things that make no sense and thinks they are making sense?
How do you handle the craziness without going insane.....?
Hugs to all of you?

By Grammy7 On 2013.09.15 22:58
My husband's dementia went down hill after his surgery for a detached retina. That was almost 2 years ago. He forgot how to dress, shave and go to the bathroom. He is now in an assisted living facility. He also has trouble speaking now. I can't understand him. It is heartbreaking seeing him try to tell me something and it doesn't make sense. Sometimes I just have to agree with him because he gets frustrated when I don't say anything. It is very sad. He is 73 and was a pharmacist. He was very intelligent and active and it just breaks my heart seeing him like this. He no longer walks, he can't put any weight on his legs. Sometimes it takes 3 caregivers to lift him from the wheelchair to his bed or recliner. This disease has robbed him of so much life. And it has taken a lot from me also. But he IS still here and for that I am thankful. You just have to take each day as it comes. And remember the good times......

By dkleinert On 2013.09.15 23:38
Grammy7: Thank you so much for your comments. I am really sorry about your husband - so sorry. My husband is 72, so I feel your pain. I see him slipping away now.....how do you afford assisted living? Does he know where he is? Does he understand? My husband was an architectural engineer, and very intelligent also.....such a terrible disease.....
How do you cope? Do you cry a lot now? Do you work full-time?
I feel so sad lately because so much of him is gone now.....I feel so impotent to do anything.....do you feel that way also?
Thanks again, Grammy7. Big HUGS to you from North Carolina.

By Grammy7 On 2013.09.16 00:00
We are rapidly going through our lifelong savings (IRA's). Will eventually need to apply for Medicaid for him. I dread that. I hear it is a nightmare. I did see an elder care atty 1 and 1/2 yrs ago. So I have done the things she suggested to be ready. I really thought he would be upset being there. But he went into the home after a hospital stay. He also has fluctuations with blood pressure. In July of 2012 I had to call 911 because it dropped to 66 over 42 and I couldn't get him to respond. The drs said it was time to place him. I really thought he would beg me to come home but that never happened. I really don't think he remembers our home and he seems content where he is.

I cry everyday. I can be in the shower or doing most anything and I break out in tears. I visit him everyday and stay for 2-5 hrs. Sometimes I cry on the way there and I always cry on the way home. Most of my evenings are spent being depressed and cruising the internet for anything that can help me or him..... My friends and family try to keep me busy but mostly I just want to be alone.

I am retired. I turn 65 on the 19th. This is not how we expected our retirement to be. This disease has definitely robbed my husband's future but mine as well.

Hugs to you also from Ohio.

By LOHENGR1N On 2013.09.16 01:12
dk and grammy, hugs to both of you ((( ))). dk, I understand your questions the way I see dementia (advanced) is that the person really doesn't know what they lost. They reach a stage that they don't know what they did for work or even what work is. They don't know two and two is four or even what two is. It is those left behind on this step in their journey that agonize over that loss. Who grieve about what once use to be. It doesn't make the grieving easier or the loss less profound but it may make it a bit less sad as you grieve to think they your loved one isn't haunted by things not achieved. Of plans spoiled. They aren't puzzling over things they can't remember and asking themselves why can't I ....(insert a plethora of items here)...like I used to. These losses and actions seem to upset Us and cause Us pain as our loved one seems unflustered by it.

As children we viewed a different world than We grown ups do maybe in some way this step is needed to prepare some for the next world to see it filled with wonder and awe as through the eyes of a child shed of the trappings of this one. I don't know but that is how I prefer to look at it. For us it sucks! For them it doesn't seem to as much. We transfer our thoughts into them, our fears, our sorrow and worry about how they are dealing with the same emotions we have but they aren't burdened by those. I don't know if this is making sense any more or if it helps but my hope is that from time to time you can think of them not being burdened by what we're thinking may be bothering them then it might give you a moment's peace if just for a few minutes. Take care, G-D bless and hang in there

By Freespirit On 2013.09.16 09:30
DK, hi
So sorry to hear this about your hubby.
I don't know if this would help, but maybe talk to your PD doc about the Exelon Patch.

By Marilyn-NJ On 2013.09.16 13:28
My husband is 64 and was a CPA by trade. He's wheelchair-bound and dementia is there, as well. The blessing of this blog is that you learn that you're not alone in this journey - for you feel that way most of the time with your peers, friends and relatives. He experiences bouts of low blood pressure but because he has been hypertensive since his 20's, his pressure zooms up uncontrollably, as well. Scary. The financial end is challenging, too, for it's tough to figure it all out. I work full-time in finance and it still drives me crazy.....how can you possibly plan for all of this. You cry, you pull yourself up from the deepest depths and you yearn for the day that you can just enjoy the sunshine. I sometimes pray that the dementia lands him into a better place of oblivion...truly. So while we know we have a common bond, it would be so much better if it was a bond based on happiness.

By lurkingforacure On 2013.09.16 18:30
So sorry that all of you are going through this, I'm just speechless and my heart goes out to all of you.

By dkleinert On 2013.09.17 00:17
Thank you soooo much all of you dear ones....I am weeping writing this. Thank you for sharing and carrying on. There is a measure of strength in knowing we are facing the same things. Working full time because I have to makes it so hard.....Lohengrin - thank you for your personal perspective. My love and hugs go out to all of you from North Carolina.

By Grammy7 On 2013.09.17 00:30
My husband has been on hospice care since July 26th. Today was a really bad day. It was the first time he barely responded to me. Usually he smiles when he sees me and kisses me when I bend to kiss him. Today there was no response. He slept for an hour and a half. Then the hospice caregiver came in to shower him. They barely had him dressed and he fell asleep while they wheeled him to his recliner and remained asleep while they transferred him. The nurse took all his vitals and everything was ok. It is very difficult to see him like this. I just have to come home and know that he is where he has to be. And I do hope that he is not aware of his situation. All I can hope for now is that he is at peace. This forum helps me so much. I don't know anyone with Parkinson & dementia so this group lets me know that I am not alone.

By Mary556 On 2013.09.17 07:32
Grammy and dk and Marilyn, we are crying with you and praying with you. and all the hidden caregivers and loved ones who are in such a sad and difficult place. Words cannot express.

Even when there is no outward response, your loved one still hears you.
Keep talking to him and singing to him and praying with him.
He still hears you and cherishes the sound of your voice. He follows everything you say internally.
When you tell him you are there and tell him to rest easy, everything will be alright, "I will always love you", he will hear you and will feel more peace inside.

By Freespirit On 2013.09.17 08:49
Mary, that is just beautiful.
Thank you.

By Marilyn-NJ On 2013.09.17 13:08
Mary - thank you from me too. I'm eating lunch and taking time to get my dosage of PD support. It helps to know I'm not alone - but misery doesn't necessarily love company for the levels of endurance that we need when watching a spouse be ravaged for such a long period of time is beyond words. I often wonder how the PD person's body can endure such multi-faceted, long-term abuse. We are the spectators and the partners. We have lost so much!

By Mary556 On 2013.09.17 15:27
*Creating Moments of Joy: A Journal for Caregivers* by Jolene Brackey
is a book I've been reading lately, wanting to understand what a person with dementia could be thinking /feeling and what are best ways to respond. Though it is geared to caregivers of persons with Alzheimer's, her book has some valuable insights that apply to other dementias or the extreme confusions that sometimes happen as side effect of meds. (Alzheimer patients forget everything after five minutes, but that does not seem to be the case for PWPs. There would seem to be differences in memory retention as well.)

When my elderly grandfather used to ask where was my grandmother (who had passed away years earlier), we learned to say "she is at church" or "she went to the store"... much kinder than making him cry over and over by breaking to him a reality he had forgotten.

When someone in a nursing home is nearing the end of their earthly journey, they may say "I want to go home"... usually they do not mean "Take me back to 25 Sycamore Street" but "I want to go to heaven now". When they start to be too tired, they may sense it is their time to be called home and may be asking the blessing of those dearest to them. Your love, the sound of your voice and the touch of your hand is Home to them, no matter their physical location.

Years ago one of my close friends had a heart attack and her heart stopped beating. Through a God-given miracle of modern medicine the doctors knew what to do to bring her back to life. I used to read about near-death experiences and remember many accounts of persons whose sense of hearing remained, even when they appeared to be gone.

By carman96 On 2013.09.17 16:15
My husband is home, still knows who I am, and is not bedridden, so I am grateful for that. I know the time will come when I have to make some really tough decisions.
I wish you all peace and strength in this long journey.
Hugs to everyone

By lurkingforacure On 2013.09.17 22:56
When my mom was in the hospital, the hospice nurse told me hearing was the last sense to go. I was lucky in that on her last night here, I was able to tell my mom everything I wanted to say... what a great mom she was, how we all loved her so much and would miss her so when she was gone, and that if she was ready to go, it was OK. I have read that it is important to let our loved ones know it is OK to move on, hard though that is for us to do. So I did.

I left her shortly before midnight to go home and take care of my PD husband and our young kids....I barely got home when the hospital called and told me my mom had passed away. It hadn't been fifteen minutes since I had left her side after telling her these things. I know she heard me, even though she wasn't conscious.

I try to always remember this:

People may forget what you said or did, but they will never forget how you made them feel.

So true.

By Grammy7 On 2013.09.18 00:12
Thanks for all your kind remarks. Every time I leave my husband I tell him how much I love him and I thank him for the wonderful life we have. I never know when it will be the last time I say these words. He was diagnosed with Parkinson's with dementia on 10/31/09. Almost 4 years ago and he has rapidly progressed. The last couple days have been pretty bad. He can barely stay awake, and all of a sudden his upper dentures won't stay in. It seems like every day there is something different. All I can do is be there and hold his hand and reassure him he is loved. This forum helps me a lot. There is so much wisdom and comfort here. Thank you....

By parkinit On 2013.09.18 21:03
Thank you all for sharing. I feel the strength in your numbers and am able to gird myself at times only with the strength I feel from others here on this board. Your strength encourages others to carry on and to be the caregivers we need to be.

By Rempt2 On 2013.09.19 19:26
My husband has dementia but not bad yet. He has issues with ADLs too and has some hallucinations. He is not bedridden yet. He was dx Oct 2012 and mostly uses a wheelchair. We try to get out for short periods. Life has changed and we enjoy what we can do. I have stopped thinking about the future. I want to enjoy what we have now. Whatever happens we will deal with it. God bless you and your husband and give you strength.

By parkinit On 2013.09.22 14:31
Live in the moment, don't look forward, don't look behind. This is what I think of when I think of this post. We are not yet where DK and Grammy are, but we have some cognitive issues and are in a wheelchair full-time. I find when I think of things I used to be able to do (with and without my PWP), I get sad. When I think of things me and my spouse could do without PD, I get sad. If I just live in the moment and cherish him (yes, I do remember the person he was in this instance), I'm much better off. It is exhausting, though. All of it.

By Rempt2 On 2013.09.22 16:20
I'm not really a f/t caregiver, just evenings and weekends as someone takes over during the day but I'm considering quitting work f/t in the spring and "retiring". It would allow additional services through hospice and elder services. The money I'm earning through work now doesn't cover full time care (even though it isnot through an agency). We are going into our savings. I feel better able to handle the situation than I did when he came from rehab and he has kind of stabilized. there are things and support groups during the day at the senior center and PD support groups I can't now attend which may benefit both of us. We did a lot while we were able. We both watched a travel video of our trip to England in 1992. It was like being there again. Fortunately he took many videos of our travels. I find being outdoors helps a lot. I love being with him outside by the ocean. Don't know how we will deal with winter. Best wishes to everyone.

By NB On 2013.10.13 14:17
The first sign of PD I saw in my mother was when she was eating a bowl of soup and her hand was trembling. That was over 20 years ago. She is now bed ridden and my sister and I take care of her and my Father (who has his list of health issues). She doesn't talk, she stares into 'space' a lot. She doesn't walk or even stand. We have been so blessed to have 3 wonderful ladies that take care of my mother during the day and my sister and I take shifts at night. She became bedridden after a bad fall in September of 2010. She made a short recovery, then it was back to the hospital after uncovering she had a compressed fracture in her back. She was admitted to a local rehab center. After only a few weeks, she developed a sacral bed sore. We are still nursing it today. She sees a wound care specialist every couple of weeks. About a year ago, she started having trouble eating and swallowing. She would get choked up on liquids, food and even her own saliva. She began to loose weight rapidly. We decided to have a GI tube inserted into her stomach. BEST think we ever did! She looks better, she's getting nourishment, and hydration. She is having more moments of clarity. I told her the other night, "Mom, I love you." She responded to me..."I love you too, darling" I almost passed out! Each day is a blessing. Although it's so hard to see my mother in this state, she really doesn't know what is happening. Which is a blessing in itself. She's not depressed, she doesn't wonder or worry about things. But, she does communicated at a different level. I pray that you all find peace during the good days and bad days. <3

By dkleinert On 2013.10.25 23:38
Thank you to all of you dear ones for all of your comments. Such a painful disease....I am so blessed to have all of you who share so freely. Thanks again LOHENGRIN for your perspective. You are right....I don't think Joe knows what he is missing, what he can't remember, what he has not gotten to do.....you help me with your honest perspectives. Love to ALL of you. Wish I could come here more often - you are such a comfort. Love and HUGS from North Carolina.

By Trusting On 2013.10.27 01:24
As I read these post my eyes are filled with tears knowing your pain and also what I will be facing. My husbands dementia is worse some days than others as I'm sure you have all seen in your own loved ones. He just said this morning that this disease is so hard b/c it just never lets up.

I found myself feeling depressed a few weeks ago. I didn't understand it b/c there was nothing really going wrong in my life. Then someone suggested that I might be grieving. It made sense. I was grieving as I am slowly losing my husband. We try to concentrate on today and not think too much about the future, but somehow the future has a way of sneaking up on us. Thanks to all of you for your posts. They are such a help.

By beadobee On 2013.11.09 01:27
I'm so frustrated I don't know what to do. My husband who is 56 was diagnosed with PD in 2009. We've only been married 11 years, so I've been a caretaker most of our marriage. He is addicted to the internet, and tries to buy stuff we certainly don't need and can't afford. I have power of attorney, and told him tonight if it happens ONE MORE TIME, passwords are going to change, and credit cards are going to be ripped up. I don't know how much more I can take. I'm trying to be the brain and do everything, but he acts like a spoiled brat and says "I want ...." I'm OVER IT!!!

By carman96 On 2013.11.09 08:21
Beadobee, perhaps you should have posted this as a new thread since it seems to be a different problem. Quite a few have posted about this problem of addiction, buying things that are not needed, porn, gambling, hoarding etc. These somehow seem to be related to medication such as mirapex. Thank goodness my husband doesn't use the computer or have a credit card. He sometimes asks for things that are just not needed and I have to be the bad guy and say no. If you have power of attorney you could cancel the credit cards for him if this is becoming a problem.
Do speak to your neurologist about medication side effects.

By chroop67 On 2013.11.09 09:43
My mom exhibits many similar traits talked about here. I am pleased to tell you that she was admitted to a geriatric psych program 5 weeks ago and they have been able to diminish some of the negative. They have reduced the sinemet and the difference is incredible. Mom has had PD for 15+ years and is 81. I can once again have a conversation with her that isn't focused on her hallucinations. I can even reason with her again. She still has memory issues and unfortunately the decrease has reduced her mobility but its a trade off that we all were willing to make.

By parkinit On 2013.11.10 01:47
Bead,
This behavior is probably drug related and not controllable by you spouse. Dopamine agonists are the worst for this: Requip,Mirapex, Neupro, and Apokyn.


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