For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic Almost no words... Go to previous topic Go to next topic Go to higher level

By JulieB On 2014.04.22 09:11
I want to share here, but what is happening feels almost too fragile, too sorrowful, too incomprehensible, to trivialize it with words. Yet that's the only way I can share. My husband Michael moved to a small veterans home one week ago. The care is more than I had hoped for. Loving, attentive, clean, tender, respectful, honorable, unrushed, thorough. In one week Michael has had two barbecues, one bonfire, a church service, many visits, good food, deep sleep, physical therapy, chaplain's visits, a haircut and beard trim, deep spa tub bathing, peaceful times by the huge aviary with many birds and babies, bingo, perfect medication administration, and more.

I drive the hour north to see him every other day, and our family drove up on Easter and took a nice meal, and we used the facility's family room with a kitchenette, games, tables and chairs to have that private time with Michael.

I call him every morning and every evening and even though he can barely make his voice heard these days, he can answer usually with a yes or a no. After a few days there I asked him one evening, "Are they treating you well?" and he replied, "Like kings!" I wept when he said that, and gave deep thanks to God.

But. He would rather be home. His dementia is bad, but he has times of lucidity and he asked me once, "How long do I have to stay here?" and said another time, "I want my house." I didn't think my heart could break into smaller pieces than it already had.

I don't know if I can bear having him gone, and am doubting the decision to move him. The care is much better than I can give, but he wants to be with me. Professionals and wives who've walked this road before me have said emphatically that this was the right decision, and that I was putting myself and Michael at a safety risk by keeping him at home any longer. Their comments help soothe my guilt and sorrow for about five minutes.

But then this house resounds with the cavernous absence of the dearest, most humble and gracious man I've ever known, and I wonder if I've lost my mind to have stepped on this path.

Michael is so vulnerable, so trusting. I can't shake the feeling that I have betrayed him somehow. He wants to be home. I want him to be home. I know it's nearly impossible to have him here, but it IS possible.

If any of you pray, please pray for us.

Thank you for caring and reading.

Julie xo

By jaxrock On 2014.04.22 11:00
My heart breaks for you....prayers from me to you.
I understand completely!

By carman96 On 2014.04.22 11:59
So sorry, that must be extremely difficult. Sounds like you have found a wonderful place for him though.
If you need prayers, then certainly we will pray for you. Hang in there.

By jcoff012 On 2014.04.22 13:11
Julie, please try to be easier on yourself. There is NO ONE here, or in your close circle of family or friends. who doubts your love and attention to your Michael. He is loved. He knows it. Somewhere, in your fog of self-doubt, so do you. You only speak lovingly and glowingly about always have.

Diseases like PD seem to wear heaviest on a loving spouse, as the PWP is often unaware of the true depth of the disease. I have often said, I cannot imagine what is in the mind of a PWP, and I know I wouldn't handle it with the grace and kindness of most PWP. But, as a caregiver of yet another kind, sweet man, I can tell you that he wants to be home because you are there and that is lovely. But, at the same time he NEEDS to be where he is...Don't reread the sadness in your post...focus on the positive, loving things you see and felt at the new facility...It comes through to all of us that Michael is lucky to have such a place...and to have such a dearheart taking care of him. Rest when you can...he is safe...and he loves you. Jane

By Rempt2 On 2014.04.23 20:11
I'm so glad they are treating our veterans well. They deserve to be treated like kings. For their service and the sacrifice of their families we are all in their debt.

By Mary556 On 2014.04.23 23:11
JulieB, I will keep praying for you and your dear Michael. A close friend once told me how difficult it is to make such a transition. I imagine myself in your place someday and cry when I read your recent posts... yours and Grammy's and some of the other dear caregivers who have had to make a similar choice. It must be heart-wrenching. I believe you have made the best decision for your husband. Really. It sounds like he is receiving excellent care.

Recently you wrote about something humorous your husband said when he was still home with you, when he described how he would spend time in his new place. I'm not remembering exactly but it struck me that he was giving you his blessing and wanting you to feel comforted. He was being protective of you. What a beautiful gift! If you ever start to second-guess your decision (which is only natural), please remember that day. When my Dad went into the hospital for his two heart operations, the last words he said to me each time: "Take care of your mother." It is in a husband's heart of hearts that he wants what is best for his wife.

*Creating Moments of Joy: A Journal for Caregivers* by Jolene Brackey
is a book that has been helpful to me. Maybe your local library would have it? The author gives lots of practical suggestions of things to do and say to comfort a person who is not able to think clearly. The focus of the book is to help persons with Alzheimer's disease who are in a nursing home, but much of it seems to be good advice for caregivers of persons with other dementia /confusion. One of the chapters is titled "I Want To Go Home" and there are a few other chapters about helping a loved one adjust to new surroundings. It may take a few months to fully adapt, but wanting to return home is a temporary phase (according to Jolene Brackey's experience).

God bless all of our PWPs and caregivers.

By Mary556 On 2014.04.23 23:31
Julie, when he asks "How long will I stay here?" you could say "Only for a little while, dear."
You will find the right answers to put his mind at ease.
Peace be with you and Michael.

By JulieB On 2014.04.25 23:05
Mary, I purchased the book you mentioned here and am finding it very helpful already. I have adjusted a couple of the things I've been saying to Michael, and can see (duh) how much better my new responses are for him.

Michael is doing something new with his fingers -- he acts like he feels some crumbs on his fingertips, then reaches his arm out as he rubs his fingers together, to let the imaginary whatevers fall to the ground. He does it several times every day now. I was mentioning to him that there wasn't anything there and that he could relax his hands. Now I'm letting that go and not addressing it at all, except to occasionally hold his hand in mine as a gentle distraction.

Thank you all for your loving comments and encouragement. Michael has been in his new home for ten days now and I'm so grateful for the tremendous care he's getting there. I do know in my head that this is best. But sometimes getting the message from the head to the heart is very difficult.

God bless you all and thank you again.... xoxo

By Grammy7 On 2014.04.25 23:36
JulieB I am praying for you and with you. It's a difficult journey.
The latest on my husband is according to hospice he is in end stage. They just stopped all drugs. He in only up for meals . He has the pressure points that just won't heal. He is now 118 lbs. He's 5'10". He is just skin and bones now. All food is pureed since swallowing is difficult. Some meals he'll only take 2 or 3 bites. Drinking is difficult and they have now added a thickener to drinks. He only had upper dentures; bottoms are his natural teeth. He won't keep his dentures in and they are posing a hazard so hospice had me take them home. The day I drove home with his teeth was hard. I kept crying and asking how much more can be taken from him. He was such a strong active man, a pharmacist by trade. He loved life. It is very hard to see him like this. But I know he is where he needs to be. I visit him daily and just holding his hand seems to calm him.

By mylove On 2014.04.25 23:58
Oh Grammy..that thought breaks my heart. Our thoughts, and as much strength as we can send, are with you.

By carman96 On 2014.04.26 06:27
Grammy, I'm so sorry. How cruel this disease is. I'm sure he knows how much you love him and is comforted by that.

By jcoff012 On 2014.04.26 14:38
Grammy, you are doing so well with everything...I wish we could help you. Hugs, Jane

By Lynnie2 On 2014.04.26 15:45
I feel for you too and I know you have made the right decision. I have a friend who also had to put her husband in the nursing home and it was very difficult for her. He has PD and Alzheimer's and another disease and doesn't know her. She is in the same town, so able to see him every day.
I don't look forward to the day I might have to do the same, but right now my husband isn't that bad. He needs guidance for certain things and doesn't drive anymore, and other symptoms I won't go into, but I am thankful it is a slow disease.
The MDS thinks he is stable right now and doesn't want to see him until next January. The last apt. was January so that is a good thing. They don't want to increase his meds now either.
I it hard seeing our spouses go the way they are going but I keep thinking that it could be worse. I just have to keep the faith.
I know it must be hard being alone, but you are fortunate to have a good place for him to be cared for.
Take care and my God Blessing you.

By Mary556 On 2014.04.27 22:57
Julie, I'm happy to know that book is helpful for you as well. My Mom has occasional episodes of confusion when she asks some difficult questions; I'm never sure how to respond. *Moments of Joy* has given me better understanding and I'm grateful for all the practical suggestions. We will keep praying.

Grammy, I am praying with you, too. It must be so sad for you now. You can be sure that your loving presence is a great comfort for your dear husband. Peace be with you both.
God bless you.

By parkinit On 2014.04.27 23:49
Julie, Grammy -
My prayers are for you both to find some peace with your decisions and situations. It is not easy. This end stage is not for the weak. My hospice nurse said recently, "This is not going to be an "easy death." I didn't think my hubby would make it after not being able to swallow for 24 hours, but he is a fighter. Unfortunately, being a fighter makes this disease even more difficult. His swallowing abilities seems to come and go and he at times simply refuses his pills.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you