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Topic Acceptance Go to previous topic Go to next topic Go to higher level

By parkinit On 2014.04.11 08:46
Acceptance . . .That word says a lot with this disease and do any of us ever really "get there?"

I'm really struggling right now. It seems my husband is progressing weekly. I'm dealing with this, have hospice for my husband, but more recently am realizing that I'm not Hercules, I have very real limitations. I'm continuing to transfer him alone, however, because I have existing back issues, my back is in pain often. I have regular massages to help, but the last few times, my massage therapist said my shoulder muscles were really bunched up and swollen.

He slid out of the chair and of the bed 4 times last week. He doesn't have strength in his legs any more. He believes buying a $20,000 power chair that will lay back, stand up ,etc. will help. He was provided a Broda chair by hospice and it is manual. I sighed a sigh of relief when he received it. They said it was to prevent pressure sores as you can change positions in the chair and I wouldn't have to transfer him so much. I sighed a sigh of relief when he was given this as he previously was attempting to use a power chair, but was being driven by others 95% of the time. The 5% of the time he would drive himself I would hear him repeating my name over and over and I would find him with his arm wedged up against the wall and he wouldn't be able to get himself out.

I explained all this to him. He said he feels like an invalid. My DH! You are an invalid and we need to makes the best of it, but you ARE an invalid. He doesn't accept this. He used to be so strong and I know he feels useless and I feel frustrated because there is nothing I can do to make it better (yes, I'm a fixer).

So, I'm looking at hiring more help and looking at nursing homes. I don't know where this will take us. I was one of those who said I would NEVER put my spouse in a nursing home, but I'm running out of options. He needs two people for all transfers. He is 220 lbs still yet.

So, if you pray, please pray for us that we will find a good solution and have peace with that decision.

By carman96 On 2014.04.11 09:07
Parkinit, you've been so brave throughout this. My heart goes out to you and your husband. I pray that you will be able to make these difficult decisions and be at peace with it.
You have done so much to try to keep him at home. Is there anyone at hospice or VA or somewhere to help you decide what is the next step? You must take care of yourself also. Glad you can get massages but you could really hurt yourself and then you wouldn't be able to help him at all.

By Mary556 On 2014.04.11 10:38
parkinit, I am praying with you, too.
A couple months ago my Mom had some home health care workers temporarily.
Her PT told me: "the first rule of lifting is - Don't."
there are so many difficult decisions now. You will find the right answer for you and your DH.
peace be with you.

By jcoff012 On 2014.04.11 14:43
We have come to know each other through our posts here. I agree that you have done your best. You know that I am a strong person, as are you. I love Carl and try to face things head on, anticipating what the future do you with your husband.

BUT, I also know that there comes a time with PD when we all need to step back and realize that our best may not be the best for our PWP. The PWP will have needs which we want to address, but which are mentally and/or physically impossible for us to handle alone...or at all.

You and only you know what a day in your life is like. Only the two of you live your life and only you can decide what works. Please know that we all feel your pain in making agonizing decisions...We are NOT doctors...we aren't trained to be...we didn't go into marraige expecting this outcome...BUT, you are bravely doing your best...and, perhaps soon, your best will be to give up some or all of his daily needs to others.

I wish we could hug you and tell you all will be well...that you have done your best...But, I think somewhere, deep down, you already know that if it weren't for PD, you would still be the same couple you once were. You have cared for him with love and it IS a loving decision to go forward with getting him the care you both know he needs.

You will make the right decision when it is time. Know we are here to listen and that no one here will judge...we will only listen and virtually hold your hand...and his. Bless you both. Rest and do something away from PD before you decide. Hugs, Jane

By parkinit On 2014.04.11 19:39
Well, God is always working even while we rest. My husband had episodes this morning similar to mini strokes one right after another and he has not snapped out of it. They are saying it wasn't mini strokes but PD progression. He is being released to a nursing home nearby that the VA will cover for us. 100% service connected disabled... Exposed to agent orange.

God helped me make the decision. He can't swallow anything but small amounts of water now and cannot eat. I tried bumping up his dosage to see if that would help him "snap out of this," but so far no response. I'm mixing meds with small amount of water so I can still give them to him.

Thank you all for your comments. And for caring. Jane I'm very sorry for past comments directed to you, personally (you know the ones). Please forgive me. I see your heart and how you minister to those here. Thank you.

By parkinit On 2014.04.12 00:56
By the way, Carman, I had three people tell me I needed to put my spouse in a nursing home this week. One was VA nurse, one was Caregiver, another was his best friend.

As of this evening, he couldn't drink, so I cannot give him his PD meds. He cannot eat either. He looks at me with pleading in his eyes and says (very softly and with difficulty), "Take me home." I'm so torn. He can hardly speak at all, but this I did hear.

By daisy On 2014.04.12 08:51
Parkinit, we all feel for you and what you are both going through at this very difficult time. Hugs..

By mylove On 2014.04.12 08:55
I wish for you strength and courage, hope and faith, to carry you through this difficult time. Hugs.

By Rempt2 On 2014.04.12 08:56
I'm so sorry it has reached this point but you can only do what is physically possible. Can they do hospice at the facility? It will give him extra attention and comfort. I saw hospice nurses at the facility when my husband was in rehab last year. My husband can still stand so he can transfer but still need 2 people to get him in a car for dr's visits. His comment "take me home" really resonates with me. I can picture mine saying that. Home to me, home to love, home to the familiar. It's hard, so hard when you just can't. The spirit is willing but the body fails us. God bless you and your husband.

By carman96 On 2014.04.12 09:38
So sorry it has come to this but the decision was taken out of your hands. You did keep your dear husband at home until the very last minute that you could. This must be a very sad time for you but I truly admire your strength and the love you have in your heart.
I hope you find some peace in the days to come. Please keep us posted.

By JulieB On 2014.04.12 10:28
I'm filled with admiration and compassion for you, Parkinit. Praying God will continue to lead you, and that you will sense His comfort. Many hugs... xoxo

By jcoff012 On 2014.04.12 14:21
Parkinit, no apologies necessary...we all come here at different stages...and with different experiences. I am still able to vent to Carl, so all is well...We have yet to face the dire circumstances of late stage least in his PD journey. His beautiful mother's journey was long and hard on everyone, but now Carl is part of a much larger family that have NO experience with it...So, I intently read all the comments such as yours so that I can be better prepared for his PD.

As always, if you need me, or anyone else, use my email anytime, day or night...being in CA, the three hour time difference often means when some are ending their day, it is still early here...virtual handholding is possible!

jane_coffey(at sign)

And, thank you for the lovely apology, but none is necessary...frustration and sadness are part of this horrid journey. I understand and am thick skinned! Hugs and good luck. Jane

By Mary556 On 2014.04.12 19:22
dear parkinit, continuing prayers for your dear husband and yourself.

By lilflower On 2014.04.12 20:06
Prayers for you and yours. Such a difficult time and decision. I'm sure you know all of us here are feeling your heartache. I always have said I wouldn't put my husband in a nursing home, but as PD puts a stronger hold on my husband and dementia starts stepping in I'm starting to feel inadequate . We always want what is best for those we love and I'm not sure anymore what I will do in the future. Keep him with me as long as I can ,fill him with as much love as I can and hope I can make the right decision when that time comes.

By Trusting On 2014.04.12 23:41
My eyes filled with tears as I read your posts. This is something that I try to prepare for but I'm not sure there is a way to prepare for our loved ones to be put in a nursing home even though it is often the best thing.
I've watched my husband go downhill this week. I watch as he tries to do jobs around the house that used to come so easy for him but now he can't figure out how to use tools, how to start his yard tools and more. He is so tired after just walking a short distance.
I find myself praying that God will take him with heart failure or something else and not have to ever have him in a home. He is also a Vietnam Vet and disabled (agent orange). My heart is hurting for both you and your spouse. My prayer for you is that he won't have to lay and suffer and that you can find peace. I tell my husband often that this is a journey we've never traveled so we will walk it together and learn as we go. Thanks for your post. May God give you strength and peace.

By VioletV On 2014.04.13 20:35
I am so sorry that things have taken this turn. Thinking of you.


By ResistanceFutil On 2014.04.13 21:34
Wishing you and your husband the best during this very difficult time.

By lurkingforacure On 2014.04.13 22:21
Not that long ago I never thought we would be where we are now....and sadly I realize that one day I will be where you are right now. I can't imagine how hard that must be, and have no idea what I will do.

My heart goes out to you and your husband. I think you are still caring for and watching over him, just in a different place, and with a little bit of needed help. Hugs, lfac

By parkinit On 2014.04.17 01:23
Well after making great strides - going from being unable to swallow (I really thought this must be it) to eating baby food, to solid food today, I thought we had the worst behind us. THEN I found out he has had a UTI that was diagnosed in the ER (which we were told NOTHING about!!), and the culture came back that it was resistant to every antibiotic. It has "colonized." Soo, now the indwelling catheter he has been putting off for so long MUST be inserted so they can do a vinegar/water wash every other day to keep the bladder acidic so the bacteria won't spread.

Those little fires are becoming bigger.

By Freespirit On 2014.04.17 13:35
Just curious. . . do you think it is possible that your husband had "acute akinesia."
Your thoughts?

By jcoff012 On 2014.04.17 17:40
Was thinking about you both last night, wondering how it is going...I hope you are able to have friends or family over or that you can find a few moments of solace this weekend.

When our now oldest daughter was 8, she went to the ER with a broken arm and after treatment and xrays sent us home...nothing said...three days later her pediatrician *himself, not his nurse* called and asked us to come to his office...It seems she had enlarged, swollen lymph nodes *my brother died of Hodgkins which had the same symptoms*...BUT the ER didn't tell us anything!...After more tests and medications, it turned out to be something else, but I fully understand your frustration...I really am sorry that some medical professionals are LESS than professional...

May you both find peace until this subsides...Love, Jane

By parkinit On 2014.04.19 18:09
Freespirit - I'm surmising that you had to do a lot of research to come up with acute akinesia as there isn't much information on the Internet on the topic!! Thank you, dear friend.

I was sure the ER told me wrong when they didn't diagnosis a stroke (but all the other hospice nurses, etc., said they thought it was). However, his recovery seemed to be too fast initially for a stroke diagnosis.

Given that it turns out he does have a UTI with the symptoms, it certainly seems it could be acute akinesia. I have a name for it, but I really don't know what this means to us. In a study I found, 25% of those with acute akinesia died and many never full recovered.

My spouse is losing ground after appearing to make great recovery strides for a few days. He has regressed on eating and is now eating very little. I'm taking him home on Monday, but I don't feel that he will last long unless he starts eating more. He will become weaker and weaker. I can't understand him (speech significantly impaired), so I can only ask yes/no questions as he can still provide a slight nod of his head. I've begged him to eat today so he will build up his strength. I think he either doesn't understand or has simply lost his will.

I feel like I am taking him home on Monday to live out what few days he may have left. I hope he proves me wrong.

By carman96 On 2014.04.20 09:47
You are so brave. I assume you will have hospice there to make things easier for you.
Whatever happens, I know you will get through it. You are a very strong person. I hope that you will have peace in your heart in the coming days, weeks, and months, knowing you have done everything humanly possible for your dear husband.
I wish we could all be there to give you a big hug.

By parkinit On 2014.04.27 23:01
After 10 days in a nursing home,I have hired additional help in the home so he can be happier in his final days, weeks, or months. I have 24 hour a day assistance, but he is so much happier here and more content. He continues to decline, but we are both happier in the home setting.

Thank you all for your kind comments.

By carman96 On 2014.04.27 23:16
I'm glad you have the help. He is home with you and you know he is getting the care he needs. That must be so much better than being apart from him. We know you have been doing what is best for him all along, and are continuing to do so now.
Take care

By jcoff012 On 2014.04.28 18:28
Be kind to yourself. You are doing your best. I love that you tried your options. I hope this is best for you both. Good luck and of course, keep us informed. Your post sounds so much happier...and relieved. Much love and many hugs, Jane

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