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Topic A big decision Go to previous topic Go to next topic Go to higher level

By VioletV On 2017.08.31 19:35
So, after lots of thought, and more things than I can describe at the moment, I have just signed the contract to have my PWP husband live at a lovely, small, personal, memory care facility. It's 2 miles from our house, has only 12 residents, and will, I hope, lead to better times between us.

I'm concerned that saying this here will be unpopular. But I truly feel that this is the best decision. I'm sad, worried, but also relieved that I am not going to be alone in preventing falls, choking, and other complications and risks.

By jcoff012 On 2017.08.31 20:10
Violet, bless your heart. No one has the right to say anything to you. You have been strong and I am sure you have mixed emotions. You have decided, now put your mind at ease. Know you did your best, and that sometimes making a decision like this falls under those decisions...ones for the best. Hugs and take care of yourself.

By VioletV On 2017.08.31 20:49
Thank you. I'm trying to find the right balance. The shopping, outfitting his room and providing all the info feels like sending another one off the college.

I am exhausted. I think once it is done I will just sleep for a week.

By fishing15 On 2017.08.31 21:21
We only can do what bests for us, and not care what others think .You did the right thing for you and your husband. Please take care of yourself.

By EachDay On 2017.08.31 21:51
It sounds like a good decision to me. A couple weeks ago I put a deposit on a Greenhouse Home. I felt immediate relief. My husband is diagnosed with mild dementia so we will continue as always but for me it was a relief to know that out there as he continues to progress there will be an option for us. We have no children or family nearby.

By Checkmate On 2017.08.31 23:58
Violet I know how you feel. My husband is on the wait list for a long term care facility close to our home. We both made this decision after some very difficult episodes. I am very sad however my husband is relieved to go. He is finding it very difficult at home.
We are hoping it will improve his relationship with our children and myself. Our doctor said it will give us a chance to be husband and wife again. I know when the 'move' day arrives it will be very emotional and our kids and I are receiving counseling. I truly believe that you are making the right decision for both of you. He will be receiving the best care that he deserves and you can be there for him and more present than ever before. My thoughts are with you. Please keep us updated.

By Burnsie33 On 2017.09.01 17:24
I understand completely and support your decision. You are doing the right thing for you and for your husband. I admire your courage!

By lurkingforacure On 2017.09.01 21:51
Violet, I have always found your posts so helpful and also believe that you are doing the right thing. No matter what one's circumstances are, this decision is a most difficult one. I hope that the change brings you much-needed rest and the opportunity to spend better quality time with your husband.

By makrivah On 2017.09.02 22:21
Caregiving is a pattern of difficult decisions. You have woven a beautiful tapestry. Stay strong.

By sara hatch On 2017.09.03 20:37
You are very fortunate to have the money for a facility. I am applying for medicaid for my husband. He is starting his 8th year of PD diagnosis. Medicaid will help him stay at home as long as possible but will pay for a nursing home if and when he needs that. It's a lot of work to get it but so worth it. I have been doing it all for these years and need assistance.

By VioletV On 2017.09.04 19:19
Yes, indeed. We are extremely fortunate.
I'm having a hip replacement in 2 months, and I am lucky to have this facility available to care for him when I have the surgery. And I feel very fortunate to have had the support and respect of this community of caregivers over the past 5 or so years, since I first found it. (and By the Way, if you can, click the Donate button above).

My husband earned well when he was working, was careful with money, and, through his firm, purchased long term care insurance right after he was diagnosed with PD. But mostly it's just the blind luck of birth, education and good fortune.

Don't know if he would have been able to get the policy as an individual. I don't think this kind of policy exists today. And I certainly won't have this kind of protection when I am his age.

I often think about those caregivers who don't have the option of help at home (which we have had) and now of good quality memory care. I truly don't know how it is done. I find myself thinking about ways to create breathing room for other PD caregivers.


By VioletV On 2017.09.08 16:59
Well, this may be the hardest thing I have ever done. I brought him to the A/L facility to day. I started crying at 5:30 this morning, and I'm still doing so on and off. (I mostly kept it together when I was with him).

Any wisdom?

By LOHENGR1N On 2017.09.08 20:06
Violet, I don't know about having any wisdom to dispense but I'd suggest keeping a steps to grieving outline handy. Just to help remind what you are experiencing is normal. Long term care and assisted living while great in most instances, I don't know how much they prepare Caregivers to handle the first going home to an empty home. This damn disease screws with us all the time. Making sure loved ones get the best of care conversely strikes Caregivers with a finality to home care. Leaving or bringing up doubts in Your mind. You made a lucid, rational informed decision, yet it is normal to doubt it. Violet, remember it is normal to grieve the progression to A/L. I hope this helps even if only a little.

By Checkmate On 2017.09.08 22:53
Violet. please consider counseling for yourself.
This is a hugh life changing event. You know it's for the best but the grieving continues. Be kind to yourself and try and get a well deserved rest. Thinking of you and hope as the days go by and a new routine develops you can find peace. Hugs.

By VioletV On 2017.09.09 10:24
Thanks all, and especially, thank you Al. Hearing from you, who deal with PD yourself, is especially comforting.

I knew I would miss him, but I didn't know how very much. Somehow I thought, after years of exhaustion, that I would get him placed there and settled, and then merrily figure out what my life would be like now.
Instead I started crying Thursday night as we talked about it, and I've cried off and on since then (tho mostly holding it together in front of him). I know it's the right decision, that he would be at risk of devastating falls in our house. But it makes me so very very sad. I think, maybe, I'm crying as much for what PD has stolen from him and from us as I am for the actual fact of the placement and separation.

I didn't think that I'd need to see someone for myself, as you suggest, Checkmate, but perhaps I will. I'll give myself a bit of time, and maybe talk to a counselor for a couple of times before my hip surgery in October.

By threadhead On 2017.09.09 12:44

By VioletV On 2017.09.09 16:27
Well, I feel better. I just had a phone call from my husband. He wanted me to take dictation of a letter to the nurse at the facility, which expressed his "complete satisfaction" at the "effective corrective action" that she took in response to his displeasure yesterday.

And, he said "I think I sent one like this to her three or four years ago."

And when I told him that I would visit him on Monday, he was so totally delighted--he had completely forgotten that I had already planned to do so.

I couldn't ask for stronger confirmation that this was the right decision, and that he is in a good place.

I can sleep much better now.


By lurkingforacure On 2017.09.09 17:40
Wow, Violet, the way your husband talks sounds so much like mine. Today my husband was trying to tell me his recliner's remote control had four buttons and "not one of them" was working. I told him the remote control actually had only two buttons, one for up, and one for down. He said "Did you confirm that?" as he is holding the remote control in his hand!

By VioletV On 2017.09.24 17:29
I'm sitting with my husband here in the memory care facility, and thought it would be a good time to post an update. He's dozing in his chair right now, so he won't mind my being on my computer, which I brought to help him with a project he wanted to work on this afternoon.

He's been here for 2 weeks, and since I came back from my 4 day trip to the West Coast I've been here for a part of every day. Yesterday he and I went out for a long day -- the nearby farmer's market, a quick drugstore stop for extra Depends, out to lunch, then to another stop to have a piece of jewelry fixed up, then back here. I spent a little more time with him before leaving for the night.

Today I came in the afternoon and we worked on the text for his toast for his daughter's December wedding, and recorded a voice sample for the DJ. After he heard how tight his voice sounded we agreed that we would ask the speech therapist, who comes regularly, to help him relax his voice before recording a final version (to serve as backup if he isn't feeling up to speaking at the wedding).

Tomorrow there will be an outing for the residents (I think three others are going) to an adaptive sailing site, where we will go sailing for a couple of hours. I'm riding down on the van with the group, and expect to have a great time -- he and I have missed being able to be out on the water together. On Friday, after dinner, there will be a Paint and Sip gathering--where wine and snacks will be served, and the attendees will work on a painting with the guidance of an artist hired for the event.

I write all of this just to help dispel the idea that having a loved one move to assisted living necessarily means a loss of connection for us, and an empty boring existence for them. It turns out that he and I are spending much more time together, and it is quality time. No more bottom wiping or pill tracking for me. Instead, it's hanging out--a little light canoodling (use your imagination!)--going out for meals, eating together here, walking in the garden and other comfortable activities. He has said to me that there are advantages to being here -- easier to keep track of all his pills, and that he likes the routine and the consistency.

Granted, this is memory care at a high level, and not all are like this one. But just this morning my young manicurist was telling me about her sister, who just moved to town, and who is working as a caregiver in a Medicaid funded setting. She told me about how her sister was (caringly and kindly) managing a resident who became combative when it was time to change her, and about her sister encountering the dad of a family friend, realizing that the son wasn't visiting. The two young women intentionally went to the restaurant where the son works, to order sandwiches, and to tell him he needed to go visit his dad -- and the son did.

For me the moral of the story is that there are careful and caring people throughout the world of professional caregivers. I think it pays to do your homework ahead of time, scope out what is available in your area, and have a plan in place before an emergency forces you to take whatever bed in whatever facility is open at the time of crisis.


By Checkmate On 2017.09.26 20:05
Thank you Violet for sharing. This gives me hope that somehow things will work out when my husband transitions into long term care. I hope you enjoyed your day trip and continue to have quality time together.

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