I am in the process of placing my husband in an assisted living dementia unit. In fact they are calling me today with a move in date. This process has taken me almost a year to get here and I know it is time. My question is how often to visit. I plan to go back to work and visiting on a weeknight may be hard especially in the winter. I have thought about twice a week. The placement person said to start out visiting what u think u will be visiting 6 months from now. That way it will be seamless once he gets adjusted. She said if u visit too often especially in the beginning they have a harder time adjusting and forming relationships with the staff.
I'm so happy that you brought up this subject. My DH is going into longterm care soon and I had the same questions. He is quite able to voice what he wants and has just told me " no visitors for a month" this is his opinion but I don't know what to expect or to do. I will be living an hours drive away and with winter coming I just don't know what will be best for us.
My DH is in a LTC facility for the past 2 1/2 mos. Since it is only 3 miles away I visit almost every day.I usually sit with him for one meal,I try to pick out someone pretty much with it to sit at our table. He usually like the attention. All the women smile and give him adoring looks(ratio is 70 females to 10 males).Since he cannot articulate his needs The staff is very responsive to my suggestions and help.I can tell by looking at his eyes when he is pain( 60yrs of experience) I guess no one knows our spouses as well as we do.I want him to feel comfortable and at ease in the facility.Alzheimers residents are not separate from other residents, I really think it works out better,much more stimulation,staff seem to be very well trained to handle the ups and downs of AZ.
When I place my wife in an Alzheimer's unit on Aug. 12, I will be living just upstairs from her, so plan to visit every day. I'll see what the staff says, and how it goes.
Placing wife tomorrow. Since I work and a goal of the placement is to allow me to spend more time with our son, I expect to visit on weekends and once during the week (I'll work at home those days). I'll be seeing more of her than that next week due to various medical and vet appointments.
Both in rehab and in the ALF my husband would sometimes call out for me by name, not by relationship. However, he generally got along better with the staff when I was not there. He was not all out and out raging, but would show his frustration and irritation.
In fact, and this was kind of cute, considering the context, he would align himself with a staff member-generally a pretty young aide. I observed it, and other staff commented, that he would speak with staff as though he and them were "we" and the other residents were "them".
I think that when I was there, he felt more like a resident and did not like it at all. He was especially adamant that I not witness him being fed. So, this is a long way of saying that I visited about once every third day, and the visits were pretty brief. Each way to drive was about 45 minutes.
Others will come that have been through this. But, what I remember from their post - depends on you and circumstances. Some between working and the drive every day it is not possible or practical. Others felt once a week was fine. Others needed the daily contact. I would not put it in stone until you get back in the routine of working, living, relaxing, yours and his needs. Remember the purpose of placing can be many, but ultimately it is for us to get rest to be their advocates vs 24/7 caregiver.
As you can read above I was at a loss as to what to do, well DH told me today that when the time comes I am to drop him off at the door and go and he wants no visitors, not even me, for a month. I guess that answers my question. He seems to be starting to live in the life he had in the military, with lots of structure and it is like when he lived in barracks. Eat and sleep and work when told to and lots of friends,different ones in the building, so lots of things to do together, but no me!!! What an end to a beautiful marriage!!
Jazzy, YOU decide what YOU need, this dementia man cannot dictate to you. Sorry but I feel that way. They are selfish and uncaring (yeah, it's the disease) but you need to do what you want and need. If it doesn't work out, then modify what you want to do. we willingly serve our spouses with love compassion and selflessness...don't give his disease the power to force you out of his life if that's not what you want.
Sorry but I'm having a bad day with DH...but what I do know now, I"LL MAKE THE DECISIONS, not him. He has dementia and can't reason, think, etc. Would you let a 2 year old tell you what to do?
LFL I know your right and thanks do much, but right now I don't really care anymore. I have had enough and if he wants the month then he can have it, I will just sleep and sit up until 2:00 a.m and sleep in. Eat when I want and just sit and smell the roses. After eight years of him being boss one more month won't hurt and I will enjoy it fully. He thinks it will be a bed of roses in there but they will not put up with his " me first" attitude for long. I will go when I am ready and if it is in one week or two then that is what I will do. Now it is on my terms and my time. I need to find me somewhere in this messed up life and the search will start the day he goes into LTC.
I placed my husband almost 3 months ago. For the first 10 days, I visited every day for an hour or two to help him settle in. Then I traveled out of town for 2 weeks. When I returned, he didn't seem to notice that I'd been gone at all. I now visit him about 5 days per week, in the afternoon for a couple of hours during their socials or group activities. If I do not visit, I don't think he notices, but when he does see me he (sort of) perks up. If I am visiting him alone (without the group entertainment), he tells me to leave after about 45 minutes. I think that because he cannot carry on any kind of conversation, he gets frustrated by my talking and attempts to get him to connect with me. Joining him at the group activities is the best quality visit we can have. I do not visit at night, leaving the sundowning/bedtime rituals to the staff.
There is no answer that would fit all of our unique situations. Newer spouses always ask me how often they should visit, the best answer I can give them is to visit enough to bring them peace but not so much that it consumes them.
My Dad always told me to live my life in such a way that when I laid my head down at night, I had no trouble fighting my thoughts to find peaceful sleep. His theory was that if I was wrestling with troubled thoughts, perhaps I should have done something different. The only way I feel peace and happiness is to see Lynn every day.
Unlike some others had noted, my husband is deeply affected if I don't go in every day. If I were to miss just two days in a row it really sets him back, he gets more withdrawn and it is harder to get him to engage. It is so apparent to everyone how much it does effect him that if I know I will miss time, say for a surgery, the nursing home suggested that I hire a private aide to come in and give him the one on one stimulation that he needs. (and that they can't give him) This has worked out wonderfully for us.
Jazzy, your situation is unlike any I have encountered over the years. I imagine it must hurt to be 'dismissed' that way after such a long and loving marriage. I am sorry you are hurting ((hugs))
There's also another aspect to this I think which is the advancement of the state our spouse is in. My wife and I haven't talked in over two years and I mean the simplest exchange. There hasn't been a hint of any recognition in almost that long. She shuffled off suddenly when I told her I miss her last year. Then she wheelchaired off. Now she can't support herself and doesn't move that much. I feed her lunch sometimes and take her out for some air.
If my wife had the slightest hint of any recognition even or attachement I would spend more time; instead in the annual review with the entire team the doctor confirmed she couldn't.
Everyone is talking about having someone to visit who in at least some form connects with them. I don't have anything like that. Most of my last memories are trying to keep up with her shuffling away while I try to tell her something which is a lot like a person already beaten up throwing themselves against a brick wall so they can tell it feels better when they stop.
Our EOAD has moved like lightning and I'm grateful she is oblivious to everything but the most basic direct experience now. It must be harder when they know us though. At least I feel it would be.
Jazzy, I know you didn't choose this but the road has been chosen nevertheless and while all this is happening you are in it's reactions and emotions and have every right to be that. There may be a new road opening though wanted/unwanted/or mixed and as this time moves forward I hope you see a path for yourself.
I asked the supervisor of my case manager here in Ontario what would happen if the NH suddenly decided they couldn't handle Dianne and I said I couldn't take her back. She answered that Dianne would not come home. They would find somewhere to put her and then figure it out. I never pursued exactly what that meant. It was just a question I considered reasonable given that I was placing Dianne in a crisis mode in the first place. That kind of implication would be something I would quietly want to be informed about so that I know what rights I have and don't have before any events unfold if I were you.
Once your husband is in LTC, it will be easier to move about and ask these questions from informed sources that are not your husband. What rights does he have to discharge himself? What rights do you have if either he or the LTC wants to discharge him?
It is of course strategically prudent that you keep that information to yourself.
Wolf Dado sounds so much like Dianne, and I too, do not really have a connection. It really sounds so eerily similar, and you are one of the only ones I know that has these rapid symptoms, (I mean Dianne) I went to a support group today, it was a large group and not one person was dealing with the issues Dado, and I face. I wanted to TELL THEM as they talked about how their mate looked good and it almost seemed like they were faking it, that NO NO NO they are not. It all happened SO rapidly with Dado I just cannot believe it.
I do visit him often, however he is only 1 mile from here. Really I wonder sometimes if it is better or not for HIM, as even when I was gone that two weeks to Canada, he did not even make any recognition when I returned, hoping for even a little light in his eyes when he saw me. Yes, it hurts when he pulls away, and yells at me when I rub his feet.
So I visit 3 or 4 times a week, for 3 hours or so. I let the caregivers know ahead when I am coming. As to the initial time when he was admitted, well there was not way I was going to wait and just visited right from the start.
Wolf, I believe it is harder when there is no recognition. Lynn was nowhere near as bad as your wife, or Coco's Dado, but there was a period of well over a year (before Marinol) that he was so lost to me about 90% of the time. The reason I was able to go in every day then was because I was able to eventually coax some sort of response from him. He was also starving to death at that point and needed the extra TLC.
Since Marinol there have been drastic changes. There is definite recognition and he still has so much quality in his life. He is able to communicate, even articulate his wants and needs ( such as asking for a glass of water or telling me he is cold.) He is able to feel happiness and express it. He enjoys reading simple picture books. He is very engaged when doing 'building' activities, such as lego's or pegs etc. He LOVES music and even tinkers with a few instruments. (he can't play a song, but he loves to hear the music anyway) His little world is such a happy one and every day I am showered with I love you's and hugs and kisses. Our daily time together brings joy to both of our lives.
So no, I have to say it is much MUCH more difficult to visit when there is no recognition....... I cowardly but truthfully say I am not sure I could do it again. My heart aches for you both.. ((Wolf and Coco))
Not one of his Dr.'s or councillors have ever run into this before. He has behavioural variant FTD and that is the only thing they can think of that might be causing this behaviour. Also he seems to want to live back when he was in the barracks. It is very confusing and painful to be dismissed like this. It's hard to even think about visiting him, but I have to continually remind myself that it is the disease not him, but that doesn't remove the hurt. He was telling me that it was for me but now he is saying he doesn't want to go but he needs that kind of structure and care. He is able to reason out his plans vey well but it's all about him but it is also a gift for me but it is really hard!! His memory is not so good anymore but he knows what he wants.
Jazzy, maybe he wants to control the situation instead of dealing with the hurt/pain it would cause him if/when you decided to place him in LTC and he didn't want to go. A form of self preservation rather than a feeling of betrayal?
When DH was placed in ALF I visited every day for 4 hours or more. After a few months I felt like I was being used by the staff. The phone call would come as soon as I got in the door to ask if I could come back and take him outside where he wanted to be. Feeling guilty I would go back to ALF. I finally wised up and refused to be at ALF staffs every beck and call. DH was there for 17 months.( In NH for past 11 months) I gradually cut my visits to an hour or two three times a week.Visiting should be about whatever you feel is right. Try not to feel guilty about your decision. I still feel quilty about not going every day. Sure hope you can find an acceptable happy medium that will truly give you tranquility on this long journey.
I haven't reached this point in my journey, but one day I more than likely will. I believe that you and only you can answer "how often to visit?" Follow your heart and find whatever works for you. Don't allow anyone ( family or friends) influence you. It's yours to decide and yours alone. I wish you peace and happiness.
AliM brings up a good point about the staff. When DH was in a NH rehab recently I found that when his aide went to visit afternoons/evenings the NH staff would leave all the personal care to the aide even though they were specifically told by the management nursing staff that the aide was NOT to perform personal care due to liability reasons. I realize there are many reasons why this happened (DH can be difficult, they are understaffed and yes, some are just lazy) but it became the norm on the 3-11 shift that the staff would leave all care to the his personal aide who I pay for.
That's a long way of saying, you have to gauge what's best for you and your LO, including gauging how attentive the staff is while you're visiting. I think in many places the staff is happy to have you handle it while you're there. During his brief stay in an ALF the evening staff called me every night to drive the 45 mins to the facility to give him his meds. That's unreasonable.
I visited everyday, for me, not DH. I never felt guilty placing him. I was so overwhelmed with him at home, but the house was so empty without him. I think the adjustment was harder for me, than him.
I am there most days. I may miss one or two a week at most (or last week when I was on vacation and his sister and friend filled in.) If I'm there at a mealtime, I'll serve as the feeder, but if not I may just give him a massage/back rub, talk to him a little, then check his supplies for what I need to bring in. Except for feeding, these are not usually extended visits, because he can't pay attention to a person at all, so a bit of physical contact is really the best I can do.
We are in the virtually no recognition category, and he's well cared for, but I like the staff to know that I'm there and care. His condition is pretty much infantile--wheelchair bound, soft foods, very few recognizable utterances--but I think human contact remains important.
CO2, Look into your heart and you will know. There is no hard and fast rule - it depends upon you, your DH, how far the facility is, your schedule, etc. I could only visit my DH about 3 times a week and sometimes there were days I just could not muster the energy to go up there. Towards the end he really didn't know how long it had been between my visits anyway. He was always happy to see me, and me him, but don't kill yourself thinking if you miss a visit it is the end of the world. Be sure and take care of YOU too.
Everything Emily said about a massage or hand rub, maybe clipping his nails, checking his supplies, playing music, telling him stories even if he can't communitcate back, etc. are good. Also don't feel you have to visit him for hours on end. Think quality not quantity. :)
Shannon* mentioned something worth repeating...that as the AD progresses your LO will not know how long it's been between visits.
You have given so much in caregiving now it's time to relax and allow those professionals do the physical demands they are paid for. Spend your time visiting, comforting. and holding his hand. Don't become an "unpaid" staff member lighting their load!
It's all about quality of time not quanity of time!~~~~
Also, I told the staff one time "I don't know how you do this everyday!" They said, "We are only here for 6-8 hours. Then we can go home and relax, have a life, etc. Do not worry about him. He is in the best of care here." I had not thought of it that way. The caregivers in nursing homes DON'T have to care give 24/7. So yes, know it is their job and take some time to rejuvenate. They do or else they would not be able to do their jobs.
I go almost every day, BUT there is recognition and interaction, of a sort. Aside from seeing Steve, one reason I go frequently is to keep tabs on his care. Although, overall it has been good, I am the one who seems to notice small issues and mention them to the nurse. Also, I want to see him now on a daily basis because I know that at some point, he'll be gone from all but my memory. So I tell myself that to hug, kiss him and do small things to care for/comfort him now will help me deal with the final loss later on.
MarilyinMD, I go almost every day, your comment echoes my reasons exactly. I guess we're lucky that we have the time to go, I'm sure some of the spouses do no have opportunity.
I agree Marilynn, there is just nobody who knows our spouse as well as we do. I can tell just by how he is behaving or a certain look if something is bothering him or he is coming down with something. They obviously can't. It is also true that in mid to larger facilities the one on one interaction is pretty limited. Lynn thrives with the one on one attention and stimulation.
I also want to say there can be quality and also quantity. Yesterday I spent 6 hours there, it was all quality. I don't usually stay that long but he was having such a spectacular day that I didn't want to leave! :)
I am always respectful to other family members who do not come see their loved ones daily. I don't judge them and figure they too know what is best for them and their loved one. Sadly they are not all so kind, so often people feel the need to tell me that I shouldn't visit every.(and then go on to tell me the various reasons they feel that way) At first I couldn't believe the audacity of these strangers and it really angered me. After a time I came to believe it was their own guilt they tried to reflect on me. It still angered me though.
It happened again today, instead of getting mad or defensive I did what I have done for the last year or so...I smiled sweetly and ask them if they would like to come meet my husband? Without fail they all said they understood better and if their loved one was as responsive as Lynn is to me, that they would come daily too. It all boils down to we are all unique creatures, we will not have the same situations, wants or needs. We simply need to do what we feel is best for the both of us.
"Well, it's ok...you don't have to visit every day." "Yes, but I want to." "It's ok...you can start spreading it out." "I actually like visiting." "But it's ok if you don't want to." "But I want to." "But you don't have to you know."
Crazy right, that they actually think they know you better than you know yourself!
"yes but I want to" should have been the end to the conversation. (that never should have happened in the first place). But still they push on. At least yours didn't continue further by listing the reasons they felt you shouldn't. Geeez!
Nikki--I loved your "would you like to come meet my husband?" You were actually doing what we do with our LO's--distract by changing their focus! Funny, huh? I guess I've been lucky so far, I have only received positive comments about visiting often (from staff). Perhaps that's because there are very few other visitors.
lol you caught on to that, it works well for most situations and people :) I too have received only positive responses from staff and doctors. It is usually family members who have recently brought in their loved ones who make these kind of comments to me. Small chat in the elevators is how it starts, I am surprised at how often it happens though.
At this point I don't have to worry about how often I visit. My wife called me 45 times yesterday and I had to come over because the new cat's claws need cutting. She was out on a 90 minute walk when I arrived (she is showing more problems with taking into account my coming over or picking her up with her activities). Spent 30 minutes trying to cut the claws and gave up, the vet will do it tomorrow, cat hates being held, otherwise a sweetie. L finally returned, I did something for her and left after a few minutes. 2 unplanned visits this week, so I don't think I have to worry about making planned visits right now. Do have to worry about keeping my job, though.
paul, I hope she settles in soon. I'm surprised she's allowed to have a cat.
Don't know if this applies but there is the family medical leave act (FMLA) that employers who have more than 50 employees must offer their employees. It allows you to take time off (unpaid) up to 90 days in a rolling calendar year without jeopardizing your employment. You can take it in increments as small as an hour. Of course you must apply for it but it's helpful just in case.
I cannot afford to take time off from work without pay. I have 4 weeks of vacation a year and plan on using it 2 weeks helping my wife (medical appointments, vet visits). But it is difficult, over 40 phone calls by 12:40 today. She is crying because they knock on her door because she hasn't come down for lunch yet (she is watching a recorded show and will come down later) and because she is trying to find out her cholesterol levels from her doctor's office, who will not call her cell phone nor respond when she calls the office.
Lynn was too advanced to use a phone when he was placed in the nursing home so I didn't have all those calls.... but I do remember when he was in the earlier stages, late 5, if I left the house for even just an hour he would call me relentlessly. It has to be extremely nerve wracking. I hope they are able to iron out the glitches so you can both find peace and comfort.
paul, I hope today is better for you and L. When my dh could still use a phone and was in an ALF for respite, he called 911 at least 10 times a day asking them "to get me out of here". So sorry she's having difficulty. Hugs to you both.
What is odd is that despite any complaint L has, she has not said to "get her out of there" or to "take me home." I am grateful for that.
One odd thing is that she almost always calls me on my cell phone. She knows my work number and home number, but her instinct on the cell is to look up my number in the phone's address book. I noticed this when she calls her father and that is the phone number she grew up with, she goes tap-tap-tap until she finds her father's address book entry.
I am seeing signs of loss of technical ability. At some point she won't be able to use the cell. And she couldn't remember how to adjust the ringer yesterday. Very sad.
So off to visit her today to take her cat to the vet, tomorrow to take her for MRI and neurologist visit, and on Saturday take her to a concert.