Last spring, a year ago, my partner and I were all excited about my son’s upcoming wedding. We shopped for mother of the groom clothes for me (I usually live in slacks). We rented a cabin the the state park where the wedding will be. We chose what gifts to give them. And we had fun anticipating, even with her short term memory loss.
Its a year later. I know she can’t go with me next week to the wedding. I know no one in her family can care for her while I’m gone. We will be getting respite care for her through the PACE program for the week I’m gone. But they told me yesterday she will have to go into a locked dementia unit. And it hit me like a ton of bricks. I was numb all day yesterday. They are right, I realize today. And I know, or at least hope, they will have the level of staffing and structure needed for her care and well being. But I feel like I shouldn’t be crying a week and a half before my son gets married. Especially when I am so very happy for him and for the wonderful woman he has chosen to be his bride.
Been reading the pages here about respite care. And when I first started on this website I was carefully following Rona’s experiences with it. Just wish for a not too bad experience for my partner, I guess. And that I can let go with my mind and heart long enough to have a good time.
Good luck, lindylou. I have an appointment to visit a memory care unit at an assisted living place today, toward an event I'd promised my wife and myself would not happen. But it probably will.
I don't know what the PACE program is or how they choose the facilities. However, locked dementia units are usually staffed with health care workers who have experience with dementia patients. I understand that all of facilities are different, and some of our members may have had negative experiences, but I can only tell you what I did when I needed respite for Sid. I visited the facility more than once and conducted long interviews with the staff, thoroughly explaining his needs. It was only for a week. When I returned home, he complained about how much he hated it, but by the next week, he had forgotten that he had even been there.
Knowing that your partner is being taken care of should ease your mind enough for you to enjoy your son's wedding. This disease takes so much from us - don't let it take the joy from this happy occasion. (Call and check on her every day if that will make you feel better)
Lindylou, Is your reaction to this news actually based on the fact that the unit is locked or is it based on the fact that it highlights just how far you have come down this sorry road? If it is the former, you may be assuming things that are not correct. Before we applied to my husband's facility, I took a tour with a geriatric care manager and she pointed out that what the facility calls the "secure dementia unit" is a much nicer environment that the other skilled nursing units - the architecture is different and it is quieter, calmer, and better appointed. Many places call these units "Memory Care." She urged me to specifically request that my husband be placed in the secure unit and not in the general wards. So I did.
To answer your question, Myrtle, its a bit of both, I think. At home my partner and I live a reasonably peaceful life. Both of us, due to past family history, avoid conflict. But she is difficult to redirect at times, here, and at the PACE center. She does not take kindly to being physically forced from, say, exiting a building, or an office. I am not sure what has caused behaviors at her program, but for the most part they have been minor bursts of anger. And she is rarely upset when I pick her up mid afternoon. These bursts of anger and her urge to carry objects, any objects, from place to place would make it difficult to maintain her in a standard nursing home. I understand that in my head. I've worked in nursing homes all my life. And if we had not travelled this far down this sorry road, she'd be going with me instead of staying.
It is just that the nursing home that they are contracted with, that will accept her with her behaviors, also accepts other residents with behavior issues as well. Surprise? And it is not always a calm place, unfortunately. There is no other viable option. She will go the dementia unit for a week, then I'll be back and she will be home.
Joan, Thanks to you, I will be visiting the facility. I will be talking with the staff. I will be letting them know the wonderful person she is, and the best ways I know to redirect and help her. I am also drafting her family to visit. And letting them know good ways to leave, if she becomes anxious at their departure. I can't call, because I will be in West Virginia, and she will be in Massachusetts. But her son will. And he or the home can contact me if necessary.
I forgot that you had worked in nursing homes. I did not realize that the locked units were for people with behavior problems (except for the behavior of escaping). The guys in my husband's unit all wear ankle bracelets and my assumption is that they are there because of "risk of elopement." They do not seem to have many behavior issues. Maybe that's different than in other locked units. I sure hope this works out for you.
Myrtle, not all units and not all nursing homes are bad. I've worked in three nursing homes all with excellent care and reputations. Because I've worked in the Worcester MA area, I am very aware that some homes are better than others. Also some nursing homes cater to clients/residents who have needs that can't be met in other environments. This is one of those, and is why my anxiety level has gone up. But I am hoping the care will be good. My immediate reaction was to cry no!!!!! My second reaction was to ask well if not this, then what? I tried finding home care in West Virginia unsuccessfully. Family can't provide care, but they can visit. And it is only a week. That is what I tell myself, it is only for a week. And hopefully like Joan's husband, in a short while, if she was unhappy, she will forget all about it in a few days.
Lindylou, my DH is in a Dementia Residential Care Facility and, specifically, in a Mens' Behavioral Unit. They have a resident/staff ratio of 3.5 to 1, so there is a lot of staff available if issues arise. Typically, there are no issues, but the residents can get a little anxious at times (especially during full moon week). Activities are catered to their needs, and the staff is well equipped to redirect, intervene, sooth, and comfort. The "Behavioral Unit" term initially shocked me, but I now believe it's the best place for my DH.
I hope you find some comfort in the facility after you've visited and had conversations with the staff. I also hope you can let go a little and enjoy yourself for the time you are away.
Yesterday, I was told by the PACE program they may not be able to find a facility to take my beloved partner. And I won't know until Tuesday if they will have found a bed for her on Wednesday.
Today, I received a phone call from the PACE physician asking for my consent to giving her Ativan to ease her "daily" 2 PM agitation, knowing I have reservations about increased pharmaceutical use due to the heavy meds she takes for her seizure disorder. Between the meds, and the stroke she had when she was 26, she is a high risk for falls. Basically I was forced to agree, but did so only if they got the okay from her neurologist.
On the phone today, I went on bended knee to her family to ask if one of them would go with us to West Virginia. Sister did offer to take her in her home for the four days, but she has no experience with dementia, and my partner would be totally disoriented in a new setting. She is a lot further into dementia than the occasional family meals show. If I were a different sort of person I would drop her off at her son's house. They are both nurses! But their are two toddlers.
Well, I've vented this, my support community, thank you. And I throw this situation out to the universe. I will dance at my son's wedding.
Can you find an aide, either through an agency or someone who can work privately for you, to go with you? Or perhaps easier, can you find an aide to live-in during the days you must be away. That is what I did when Larry could not be left alone and I had to go to Colorado for five days to care for disabled DD following a surgery. I just paid Larry's regular aide to live-in. (Cost a fortune, needless to say, but sometimes you do what you gotta do.)
As a public health nurse, I have from time to time seen families take their ill family member (whether mental, physical, or both) on vacations, paying for an aide to go along. Different states have different rules about how many days a state-certificated aide can work in another state under these kinds of circumstances.
I hate that you have to experience so much stress in connection with this. Even if the respite placement were assured, there would be a lot of stress in leaving your partner while you went to the wedding. And now this! Please let us know it works out.
PACE came through yesterday and found a nursing home with a locked dementia unit that will take my partner for the week. Its 15 minutes from her sister who will stop in regularly. I went out today, checked it out, talked with the folks there and it looks like it will work. My level of stress has diminished, while not entirely, at least significantly. I am relieved that it is a dementia unit, not a behavioral unit. I'm bringing her tomorrow, leaving for West Virginia early on Thursday.
Want to thank Elizabeth and Wolf for their suggestions - truly had not thought of hiring an aide to stay at her sister's house. I was working on that idea when I got notice of the opening and her acceptance.
Now if dropping her off does not prove too eventful, maybe I will begin to relax enough to celebrate this wedding. I love the young woman my son has chosen. They are both good people and good for each other.
Who knew you'd really need respite after just trying to find respite?
This is one instance to see that despite the heartache and the loss and the work and even the guilt - there is a you who has a life and connections around you. Go and dance at his wedding!
Have tried to write the story of my respite several times. Here is a disjointed account.
I asked my love for a kiss when I was leaving the nursing home after dropping her off. She considered refusing, I saw it in her eyes. Then she said yes, and gave me a perfunctory kiss, and barely getting the words right, said I better pray for her because it was the least I could do. Her way of letting me know she was not a happy camper in her temporary home.
When I was down in my cabin in in the middle of a state park in West Virginia that was the chosen venue for son’s wedding, I heard a very loud catbird out my window, but when I left to run a shopping errand (this mother of the groom’s task was to run the morning after breakfast), I discovered the catbird was really a noisy little kitten (4 weeks? six weeks?). It took one look at me and decided I was its human, and went from the ground to my shoulder in two seconds. I peeled it off me and placed it on the ground. No go. It was on my shoulder again in another two seconds. This repeated itself two more times. I realized if I did find a way to release it, this kitten was coyote food. Now I realize coyotes have to eat, but………… Do I really have to be needed every second of every day for ever?
The wedding was beautiful and happy and celebratory. The bride, perfect for my son. Never truly knew the meaning of the “daughter I never had”, but now I do. I danced with joy and happiness. And felt peace.
Picked up my bride from her temporary home. It was quite amazing really. I appeared out of the blue. The very person she had been waiting for without knowing who she was waiting for. The surprise in her eyes. The happiness. I explained to her how I left her here in Massachusetts with her blessing so I could go to my son’s wedding. She held on to me as tightly as a kitten, and said I wanted you to go, and I’m glad you did, and I hope you had a good time, but I don’t know if I can ever do this again. Sometimes she can get her messages across as long as they require no nouns.
The nursing home is forgotten now. Our routine at home is mostly the same, with new problems occurring and being dealt with one by one. But I am lighter now, the happiness of my “respite” still with me.
She has every right to be disgruntled just as she would never be anything like this if she were herself.
But you did get through arranging this and then you did get to be at your son's wedding and you did get a taste of life. You were there for your son and now have the daughter you never had in your family.
Now you get to thud back into 'reality'. But it's not the same exactly. I'm happy for you Lindylou.