Yes, I have been percolating many thoughts lately...
Among them...
There seems to be a general default assumption that keeping our AD spouses at home is plan A (if we can swing it,) and plan B (placement) would only kick in if/when we reach a breaking point either because we cannot manage our LO's needs, or some other trigger.
Anyway, I've kind of been gearing my thinking in that vein. I'm trying to consider all angles though. Especially in light of how little entertainment value I provide for Jeff in our day to day lives. We do try to go out to lunch, and complete an errand or two, but I have my own pursuits I want or need to do at home, and he spends a lot of time at very loose ends. Luckily, he is not troublesome, but it sometimes strikes me as very dreary...only me for company most of the time. Not to mention that I find it a bit dreary myself, being so limited in my comings and goings since he cannot be left alone.
Frankly, I can imagine a scenario in which his life might be a little richer if he lived somewhere geared for his needs, but with other similar people around. Suppose I were there daily, and could still take him out for lunch some (as long as he continues to enjoy it,) but then I would go home.
This thinking troubles me on a few levels. One...it pleases me to think I could go home, have evenings free, have some time to myself, take a class if I want to. These thoughts are pleasing. Therefore, I feel guilty and think my reasons must be only selfish.
But what if it would be more stimulating for him to be in a different environment? There has to be a reason other than self-flagellation that many of us don't turn to this kind of arrangement sooner. I guess money is a biggie, and LO's who are simply NOT happy with the idea of living somewhere else. Obviously if your LO professes great sadness at living away, that will color your perspective. But I don't know that it would be sad for everyone. What if it's better for him? Can that be possible?
This message brought to you by the mid-winter doldrums. Perhaps Spring will infuse me with renewed caregiving vigor.
A good dementia home should provide a lot of mental stimulation. If the TV is blaring Days of Our lives run as fast as you can. I found early on, when Bill was still somewhat alert, that the residents got along well with each other. They didn't feel pressured to act "normal". They played cards-by their own rules. Local church and school groups came in often. Many times I found the residents engrossed in deep conversations only they could understand. Just eating together provided stimulation. Of course money is always the problem as facilities are very expensive.
I have had these thoughts too Emily..Day care which just started a couple of weeks ago is my saviour right now. It's helping me get through a bit longer. before placement, DH is too aware of his surroundings just now, and would not be happy or want to stay in place.
emily--What you're asking is exactly what I hope proves true for my DH. He has always wanted the promise that I would not Place him. I have always answered that I believe the best place for him is at home, but that if his condition got really worse, or mine did, or something drastic happened, my job would still be to make sure he had the best care possible and that might be in a NH. I have researched places in our area, and have been arranging Placement, because things have progressed that far. There will be 3 shifts of workers caring for him. there will be activities. Those 2 things alone will be better than one tired, disabled Caregiver and some in-home help each week. He's in the Hospital now, being treated for congestive Heart Failure and for a major Med adjustment. Our house is in a Short Sale. I have to apartment hunt for me. Even so, his plaintive statement tears my heart, "I want to come home." I believe once he's finally settled into the NH, he will come to see it as "home'. I hope so.
DH has been living at an ALF for 15 months now and I can honestly say he's happier there where life is geared to his needs, there's no pressure on him and a perfectly wonderful activity director who truly loves the residents. This is where he belongs and is totally content. One day he said to me, "I'm happy when you come to visit me," but then added, "But I'm happy when you don't come too." I originally had to place him because his wandering had become dangerous and the retirement facility where we lived said that I had to find other arrangements for him. He no longer feels the need to escape to some other place. And now that his memory is completely gone and he remembers nothing at all of his life, he's content to live there and have visits from his daughter and me, who he refers to as "My people" since he has no idea who we really are or what our names are.
I placed my dh almost 3 months ago. He had been an unhappy person for the 4 years before placement. Now he is mostly unhappy in placement and begs for me to take him home. For him "home" is not a physical location, but just a place in his mind before he started having memory and spatial problems, back when life was normal. Unfortunately, no one can take him to this place called "home", it is lost forever. Now I am waiting for him to adjust and for me to adjust. Placement has been much harder for me to adjust to than I thought it would be. Of course, before placement, I was just existing one day at a time. Its those expectations that do you in every time.
Yes, I believe placement can be better for the AD individual and for the CG as well. But like everything else w/AD, it's not universal. My heart was shattered when I placed DH, but it was either that or I'd have to be placed. I was getting elderly, my health was being compromised, I had no choice and I waited too long. His heart also broke when I left him, but in no time he adjusted. It is impossible for most alone-at-home CG's to be able to care for and entertain someone w/AD year after year. I had taped lots of TV programs that he liked and he'd watch them over and over as if they were new, but keeping them busy every day all day is asking too much. He had a lady friend he introduced to everyone as his wife, he was 'hail fellow, well met' with the men, he participated in activities and outings. Guilt is a heavy burden that most carry without reason. You didn't cause any of this, you can't be expected to be all things at all times endlessly. So, yes, as hard as it is, I think placement is usually best for all.
I initially read your post while waiting in a doc's office this afternoon (for me not H); I could read but not post.
I am having a hard time on this forum highlighting and responding and also with posting links.
And, I am more than tired; I guess medical treatments tend to do that?!
Even in this fatigued state, I want to say that your writing is amazing...Either you are naturally blessed or I would guess at a couple of grad programs (or both).
Regarding your Jeff; my H's N has pretty much, well, he has definitely said to me "you are depressed and dancing on the head of a pin and (H) would be better off in another environment." He has known both of us for almost 12 years. Initially he saw H alone for appointments but in the past few years has seen me regularly as well, not as a patient, but when I came with H.
It still remains that H will not even go to daycare, let alone be placed; these are his rights and so I "dance".
I'm too tired to do much other than piggyback on what hikergirl said. H is still, I think, aware that this is what he calls home but ... well, big but, and I'll leave it at that
Emily, there can be benefit if you can afford it. I do know when we are at RV parks where I am working hb does much better. He has the monthlies and guest to chat with as he walks around the park. It really lifted his spirits and helped me as I did not have to worry about him getting into things as much.
My sil has been in a facility long before most would because she lived alone. Once she started wandering her daughters put her in a locked facility where she also has activities to do.
Do not feel guilty or bad about wanting to put him somewhere that he can have a better quality of life - and you can go on with life.
I could not agree more. To have a spouse in a quality, clean and safe facility where they have the care of many trained clinicians will make their life better. It is comforting to know there are not just one pair of eyes engaged 24 hrs. trying to meet every need. I have found after a year in the unit and continued progress of the disease, my wife has adjusted well. While her care gives me peace of mind, I was not prepared for the resulting life alone for me. How does a senior pick up the pieces of their life and move forward?
tom, I agree that placement is harder on us than it is on them. More and more I realize that I am just a visitor to his world, welcome when I appear, but not engaged in the day to day stuff.
You don't realize what a loaded, conflicted, confusing issue this has been for all who've been there until you stick your own toe in the water.
As several have expressed, it is worrisome to consider placement when your LO still knows where he is. It's a big reason I'm still holding this at arm's length--as something in our future.
On the other hand, as I observe the incremental deterioration of his visual navigation system, I have to wonder what's around the corner. He fell down trying to get his pants on this morning, and trying to get in the car the other night. Bumped his head on the door trying to go outside today. Fell up the two porch steps yesterday, and is becoming more and more apt to track tp all over the house when he exits the bathroom. Apart from when he's simply circulating like a Roomba (no particular purpose,) I must guide him everywhere. Are we watching tv? I can't say, "come on down!" from 10 feet away. He will turn in bewildered circles wondering where I'm calling from. I have to go get him, and lead him to the couch.
I'm almost wondering if even an ALF designed for Alz people is going to be able to deal with this. They will not be able to say "Jeff, come get your dinner." They'll have to lead him to the chair, pull it out, make sure he doesn't miss it, then stick a fork in his hand.
Emily. I have found well trained Alz staff are very qualified to deal w/the individual's needs...and the needs are all, as we know, varied by resident. Individual care plans are developed for each resident w/goals, a plan to achieve them and the progress is monitored. All plans are individualized and all with the best care for the resident in mind. These plans will include all elements of care that are needed as well as plans for engaging them in social and physical activities in the unit.
Emily--Ithink I may have posted this before. So far, I am plesantly surprised with Steve's adjustment to the ALF; I know much of it is due to the med adjustment done immediatly prior to it. However, I've come to the conclusion that this "sheltered enviornment" may actually be better for him than our home was. Although I tried my best to make our home an mini ALF and to fill his life with apprpriate activities, I think the truth is that he had perhaps progressed beyond that being practical.
Knowing whether the facility environment will be good for his PCA symptoms is a hard call, but a 2-week respite stay might give you a heads up on that. Although he seems to still know where he is, based on what you've said about Jeff's easygoing personality, he may not give you any resistance to a trial run.
Emily I have the same thoughts. There are a lot of times I think my dh would be better off in a nh where he would be around people like himself and more activities than I can get him to do at home. I have my computer to keep me company but he has only me and the tv. He asks all the time if we can go home and I tell him this is home. But I know he does not want to go to a nh although I know it is coming soon. I'm not sure I can handle it so maybe i'm being selfish by keeping him home with me.
What makes placement difficult for me is I know where I want him to go but he is 2 on wait list and I have to apply for medical assistance, which means his disability will go with him, how am I going to live. I will have to get a second job on weekends. Who wants to hire a 57 year old without computer skills?
GrannyD,my DH keeps asking to go home constantly when he's sundowning and I,too, tell him this is home.He's not convinced,I don't know where he wants to go. He has always been a loner and I think he will decline very quickly in a NH, but I know that time is coming.He will sit and watch me use the computer but doesn't watch TV.We live in the country,no neighbors in seeing distance,and he does get bored,but I'm not sure how he would do in a NH.What to do?
My hb was placed in early Oct. after falling, knocking himself out, being evaluated in hospital. There is much more activity there; however, most of the time he doesn't choose to participate in it directly. He never mentions "home" or being unhappy there. Doesn't watch TV. He does get more attention from a variety of staff which he enjoys. Placement has been good for both of us. I visit him every day and the stress of daily hands on care is gone. It wouldn't have happened if an excellent elder law attorney hadn't worked his magic w/my limited funds. (HB has no $ - spent all he made throughout our marriage.)
I think Emily said this in her post but I was told by a social worker that when they want to go home, it is not really a geographical place but a state of mind in which they were happy and knew what they were doing. Gord went through a phase where he would pack things to "go home." The urge to go home never left although the packing did stop eventually.
Claude did this also in the year or so before he passed on. He was always asking to go home and where was Mom... I'd tell him he was home and I was right here (he always called me Mom). My answer would satisfy him for awhile and he would ask again.
I think my husband's quality of life has improved with his placement. He gets the 24x7 care he needs by people who are not exhausted and tired all the time. He has a consistent routine and he has doctors who come visit him when needed.
You would think it would be much easier on me after over 2 years but it isn't what you would think.
Emily, My husband has been in an ALF since late September. Truthfully I should have done it sooner. He adapted well and seems very content. I visit everyday. He doesn't know who I am, but knows I'm familiar. He still smiles when he sees me. That makes me so happy. He has activities all day long. When he first went, he asked where he was going. I told him it was a hotel for people who can't be alone. He totally accepted it. Now the whole family and our friends refer to it as the hotel. It was agood choice for him. I'm still trying to let go a bit.
I always think no one can say they know exactly how anyone else feels.
Every day I evaluate H's condition and how it affects me. Some days I think, I can't stand this anymore and other times I think: "this is not so bad; it is better than trying to write a check every month for $5000".
Okay, I guess I'm not sure when an ALF is appropriate or the NH? It seems to me that your LO needs to be able to navigate on his own somewhat to be in the ALF - is this correct? And, if they cannot navigate on their own, don't they need to be in skilled Nursing Care? We have two communities near by that have AD units and the whole gamit for retirement and nursing care, etc. I guess I should go talk to them. DH is nowhere near being willing to leave home; but his memory, vision, balance are deteriorating at a fairly rapid clip now; so I don't know what this next year will bring.
Mothert...I think that, depending on the facility, the definitions can be loose. I thought that as well, that ALF could only refer to the kind of place where meals are offered, cleaning services provided, but residents are somewhat independent to come and go.
The one I've been thinking of bills itself as "assisted living," but is only for people with AD and related dementias, so obviously not much independence is expected in its residents, and they provide help with everything. I don't know whether these designations have any legal boundaries, but it seems probable that people placing loved ones in a facility for AD might feel a little better about "assisted living" than they might about "nursing home." So that might be the explanation.
As I recall, the ALF industry does not use "Nursing Home" as an identity anymore and, likely, for the obvious reasons what that name may conjure up for many. In my search, I found ALF varied from independent living..think just seniors...to significant care but did not include, as a rule, ALZ/dementia residents. These residents are seen as needing special disease related care...specially trained caregivers and the unit was most ofter referred to as Memory Care. I hope this helps some.
The ALF where my husband resides, is made up of 2 areas. One is independant, assisted living. The other is a secure memory unit. Some people are able to get around on their own. Some are in wheel chairs. Some are actually have hospice. I am mostly happy with the whole area. There is a nurse on duty, who over looks the meds. There is a Dr. on call. There is always a med tech on duty as well as resident assistants. They are not nursing homes because there is no skilled nursing staff tending the residents. Believe me the price of a nursing home is way out of bounds for us. If you can qualify for VA benefits or Medicaid, it would be affordable. I like the idea that he has his own place that is private and he can come and go as he pleases. He still has privacy if he wants it. Though he is kept track of at all times. Hope I have been helpful.
Emily: Justifying the cost of institutionalized care is a hard call. How do you put a pricetag on stress reduction???? Peace of mind? I wrestled with this dilemma for a long time and didn't realize what a relief it would be to have the 24/7 direct responsibility off my shoulders until the decision was made clear by my husband's geripsych unit stays. All I can say is, try a respite stay of a decent length and see how you feel having a "life" again. Once that happened to me, I realized that my husband and I had both reached the stage where placement was worth the cost.
Thank you all. I know that I need to go out and start beating the bushes and see what's available. I really like the idea of having skilled nurses around and a bona fide doctor on call. I think it's very important to have real qualified people caring for our lo and not just minimum wage people who need a job. I also understand the money issue, qualified people come with a price tag. I'm going to keep Katie for as long as we can and will avoid placing dh unless he makes my life miserable and unhealthy. Boy, not really any good choices, are there?
It depends on why you are placing the patient and when you place the patient. My neighbor placed herself when it wasn't safe for her to be home alone anymore. In her case she BLOOMED. It gave her a good two years on a plateau, of a good life. She is only just beginning to slip now. In my husband's case, he was placed after a crisis. The placement didn't make things worse or better. It just was what it was.