How do you know when it is time to place your LO? I recall Amber posting, probably more than a year ago, that the time to place is about 6 months before you think its time to place.
Here is my problem. We had a great winter. Respite time, both in house with caregivers and with my DH in a NH once a month, was enough to keep us both happy and we had a routine going that was comfortable. I knew when I could expect some relief, and took it. I had a life.
Now for the last 6 weeks my in home care giver support is all up in the air, and it is stressing me out. On top of that, with the yard work and everything else one needs to do in a northern clime this time of year, I am physically overworked, when I add this to all the household duties (not to mention keeping an eye on my DH). In addition, my DH now requires a walker to get around outdoors. I find I struggle to get it in and out of the car. And he has deteriorated - more confused, more delusions, more memory loss.
At the support group meeting I was at yesterday, I learned that the ALF that takes him for a week each month for respite, will only take him as long as he is relatively autonomous - needs little help in dressing, can toilet himself, can make his way to the dining room by himself. For now he meets their criteria, but I worry that it won't be long before he can no longer be termed "autonomous" and the other options for respite care in our area are extremely limited.
I am tired. I get stressed out easily. Today I broke down in tears when I was totally frustrated with a screw up with the postal system that may require me to change my bank account. I spent hours on the phone this morning dealing with this. I broke down and cried in front of my DH. Something I have tried very hard not to do. I am turning to sleeping pills more often, just so I can sleep well enough to get through the day.
So, am I ready to place? Is it just a seasonal thing and it will pass when all the spring chores are done and the additional workload of the yard is done? Will I be happier once my caregiver situation returns to normal? Am I feeling this way because things were so good in the winter and now they aren't? Or should I take the steps now to place my DH?
Part of what is making this decision so hard for me is that my DH is just so nice - not just to everyone else he meets but to me as well. Everyone describes him as sweet, and he really is. He very rarely shows any frustration or anger, and then usually at himself when he can't express himself, or he can't find what he is looking for.
I've had the medical forms for the doctor to complete to begin the placement process since October. I did not take them to her, because things settled down in the wintertime, and not only did I cope, but life was almost pleasant. Should I get the ball rolling now?
I know this is an individual decision, but I really want to know what you would advise.
bdq, first let me say my spouse is still at home and has been and likely will continue to be a handful since he has bvFTD. No Mr. Nice Guy here, even after 7 years. I pray that someday he will turn into Mr. Nice Guy but that's unlikely.
I wish I could give you some magical wisdom which would help you in making this decision about placement but I can't. I can only offer observations and my opinion and in the scheme of things probably holds no weight. However, can you ask yourself why you are feeling overwhelmed right now? If it's spring chores, is there someone or a high school student you can hire to help out right now so you can make a better decision when you're not so stressed with the chores the change of seasons bring?
Based on the emotions you describe..crying, frustration, being tired, etc. to me it sounds like you might be in a place to seriously consider placement. I think adding to your anxiety is the fact that if you place him in the ALF, how long will it be before he has to move out and then what? That's a serious concern for all of us because the last thing we want to do is move them again after they have adjusted to a new facility.
Is it at all financially possible to get a volunteer or paid caregiver a few hours a week to watch him at home while you take care of Spring chores? Or hire a high school kid? Perhaps having an extra pair of hands to get through the spring will help you accomplish all the things you need to now and allow you to re-evaluate the situation without the seasonal stress.
Everyone on this site says we make the decision to place at least 6 months too late. I have committed to keeping my spouse at home as log as possible almost no matter what that entails but each situation is different. Certainly no descison is better than another because each is so very, very different. whatever decision you make I know it will be in the best interest of both of you.
Bqd--LFL is correct. Only you can make the decision. I placed my husband not because he was such a physical challenge but it was his emotional neediness that I could not handle. We have a small condo and I had no privacy. He always wanted to know where I was. I also worked from home and it was constant interruptions to do something for him. I was angry, frustrated and constantly stressed and I hated the person I,was becoming. I placed him on a Medicaid waiver in assisted living and then had to move him when his needs became too much. Moving was traumatic for me and for him and he declined greatly after the move. If I had it to,over again I would have tried for a place that would keep him to the end. I would advise anyone placing their spouse to,get,something in writing so you can minimize moving. Also I learned that if they have behaviors such as combativeness or agitation or urinating inappropriately as my husband did many nursing homes will not accept them with such behaviors. Medication can control some but not all such behaviors. i also learned that placing them is not the end but the beginning of yet another phase of caregiving.
LFL and CO2 have given good advice. I would add to it that you should have the doctor fill out the form so it is ready when you need it. The last thing you need is to rush and stress to get paperwork if something happens that requires you to place him right away. Here in Florida, the doctor's approval notice lasts for a certain number of months - I forgot the exact number. If placement hasn't occurred in that time period, the paperwork has to be redone and signed again.
I was physically broken down by the time I placed Sid. After I made the decision, it took 7 months of fighting with Medicaid to get them to approve his placement. By then, I was barely able to function, and could not stand without leaning against a wall because the physical part of caregiving had destroyed my back. I was also an emotional and mental wreck. Don't let it get to that point for you.
So sorry you are going through so much trauma. The others are right, only you can make this decision and it is hard one to make. Knowing where you live and the availability of care, they are also giving you good advise to get the paperwork in order. It's taking many months to get a bed and in your area you don't have much choice. When we had lunch together so many months ago you talked about possibly moving into the big city near us and is that still a possible option? I know how you love your home but maybe it's time to think about that step in order to get the care he needs and life you may need. Day programs are more available in larger centres so he may not need placement and you can get evening care in home easier as well. So many options and they are all so difficult. This disease has taken away our lives sometimes causing us to have to leave our special places in order to get the right care for our loved ones. You are a pretty savvy lady so you will make the right decision for both if you.
Thank you so much for all of your advice - I knew I could count on the members of this forum for their wisdom and experience.
It is indeed a tough decision, but I am sensing in myself that I am nearing the end of what I can handle and not begin to resent my DH and his needs to the point that I will hate him.
LFL - I discovered last summer when I was recovering from gall bladder surgery that there are no young people willing to take on yard work. Our little community consists mainly of seniors, young people with small children who have moved back to be near granny, and cottagers. There are no jobs in the area, so there are very few people with teenagers around. Last year I hired professional landscapers to look after my yard because I had no other choice - it was expensive, and they damaged several perennials as well as the siding on my house, just adding to the stress. At a meeting in October, several of us pointed out that a service that will do yard work to keep seniors in their homes longer is severely lacking in our area - we can get help with inside tasks, but not outside.
Jazzy - I have left city life behind. Even though its a different part of the country, I feel like I have gone back to my roots and am enjoying being a country girl again. If I had to move from our current location, I would move into the nearest town, where I have established a circle of friends and activities that I enjoy. But I would like to stay here as long as possible. And physically (now that I have recovered from my breast cancer and gall bladder surgeries) I am quite capable of looking after the place, if I didn't also have my DH to look after. He is currently late stage 5, early 6, and as everyone knows, that stage demands a lot of care. And if it means I have to travel to see my DH once he is placed, so be it.
Joan, I have no intention of letting myself become an emotional, physical, and mental wreck. My heart goes out to you for all you have endured. This is why I am asking the question now, when I am just beginning to see the signs in me that this is too much, so that perhaps I will still be fully functioning by the time my DH is placed.
My gut is telling me it is time to get the ball rolling. My DH is going for a week of respite care next Thursday. After I drop him off, I think I will go to visit his doctor (in the same town) and give her the paperwork to complete. If the request for placement gets rejected by the social services committee further down the line, I won't have lost anything for my efforts, and it may in fact give social services a wake up call to provide me with home services I am not currently receiving.
Remember too - if he is accepted but you are not ready, you can always refuse at the time. It sounds though it is more than just putting him on a waiting list. If so it might not be that easy. But please do start the paperwork. When he is in respite for the week will be a good time to think it through.
I agree about being in the country. I have connected up with a grade school friend who post pictures of barns every day on Facebook. The pictures so makes me long for a quiet country setting. Thankfully the RV park we are in is surrounded by fields, our spot is on the outside rows so we have nothing close behind us. I guess it is as close to country as I will get for now.
Yes, Charlotte, it is more than just putting him on a waiting list. The doctor can recommend any of the following: status quo (with perhaps increased home support), intermediate facilities (ALF) or institutional facilities (LTC, NH). On top of my DH's dementia, he also has ataxia, dysphasia and now needs a walker to move about. And he can't see very well because of glaucoma and cataracts. He is urinary incontinent, and sometimes fecal incontinent. So he is physically falling apart as fast or faster than he is cognitively. After the doctor completes the report, it goes to the occupational therapist, then back to the social worker, and then to committee for the final decision.
I will just have to wait to see what the doctor decides to recommend. In my favor, she knows my health history as well, and what a struggle it has been for me over the last couple of years with my own health problems and treatments on top of DH's dementia.
But I am feeling more optimistic this afternoon. We spent an hour at our "local" (50 miles away) branch of the bank, working out the problems that stressed me out yesterday. On the way home, DH and I stopped for lunch. And our son has agreed to come up next weekend while DH is in respite, to help me complete the spring yard work. And DH doesn't know it yet, but yesterday I made reservations at our local restaurant for DH to take me out for Mother's Day dinner tomorrow. He doesn't remember that its Mother's Day, but I do!
But most of all, I am feeling better because I have made a decision, and I will act on it. I was headed in that direction, but I needed that little extra push, and now I have it. Thank you!
bqd, Like many people, I waited to admit my spouse to LTC until I could no longer care for him at home. I did that because I made the following assumptions: (1) he was better off at home than he would be in LTC; and (2) because of that, it was best not to admit him to LTC until it was absolutely necessary. Those assumptions were incorrect. In fact, my husband is better off and happier in LTC than he was at home. I was floored when I realized this. What I did not understand was that he desperately needed more structure, recreational activities, and socialization than he was getting at adult day care and at home. He gets all of this in LTC.
Of course, this is not true for everyone. We have all read many stories on this site about LTC facilities that do not meet the needs of the residents. We have also read about spouses who do very badly even in good facilities and some placements that are disasters. But don’t assume that is true in every case.
If you are asking "is it time?" Chances are it is. What you can bear is more important than his condition. If you keep. Journal that can help, review it for bad days vs good. There will be good days when you think you can do it, in the past month how many good days were there?
Good question paulc. If I look back over the last 6 weeks, I would definitely say that the bad days outweigh the good. And that fact that I actually broke down and cried this week (in front of my DH) is a very bad sign for me. I often shed tears when DH isn't near to see them, but not while he can witness the pain that the ongoing stress of caring for him is causing me. I know how much that bothers him (at least for a moment when it registers).
Myrtle, I have also been thinking that my DH might actually do better in an ALF or LTC. His opportunities for socialization here at home are extremely limited. No one comes to visit, the care givers who do come to give me a break don't do anything but watch TV while they make sure he doesn't get into trouble, because he doesn't initiate a conversation on his own, and has difficulty finding words and completing sentences to carry on a conversation. And I am too busy with looking after the house to spend any meaningful time with him giving him any kind of stimulating recreational activities. It takes all extra energy to bite my tongue not to comment on statements that he does make that are so far from reality that it is obvious his world is not mine.
He does enjoy day center, and he now enjoys going into respite where social interaction and recreational activities abound. So yes, it might be better for his sake, not just mine to at least begin the process of placing him.
Listen to your gut...it's time. Once you get the ball rolling it can still take months. If you are already "not liking the person you are becoming", it is time! I had those same feelings.
The time for placement is when the caregiver needs it. Never mind the patient, he will continue to get worse in the long term whether he is at home or in a facility--no matter the season. I waited too long, my children were telling me, 'please, we're begging you, it's time.' They meant it was time for me, for their Mom before they lost me, too. Many of us will tell you it was the hardest thing, the last thing we wanted. What does your son say? Does he think that you need to get out of this for your own well being? You have my sympathy & understanding, but, honestly, the situation will not get better. Save yourself--if not for yourself, then for your son.
When trying to decide whether to place a spouse, remember that it isn't going to help them one bit if you yourself drop down dead. And placing them will still leave you with a thousand things to do, and a big role as their advocate with the facility. Placing your spouse is still very much taking care of them…just in a different way.
I wasn't going to say anything to my children until after I had given the form to the doctor, but when my son called yesterday to wish me a happy Mother's Day, he made the mistake of asking how it was going, and so I said "not good" and told him what I was planning to do. I walked him through the steps that have to be undertaken before his father actually gets placed. Our son was very supportive. He is very educated about this disease. He does volunteer work for the Alzheimer's Society. And he watched his father struggle with utensils when we went out to dinner a couple of weeks ago, so he knows that his father is deteriorating. He knows this is taking a toll on me. But I told him not to tell his sister what I was planning to do, just yet. She struggles with depression, and just mentioning the idea of placing her father brings her down. I know I shouldn't worry about what she thinks or how she behaves with this news, but I do. I wish I could wave a magic wand and make everyone happy, but I can't.
I didn't sleep well last night, and have a headache this morning.
Bqd- just know we are here for you. As I reflect back I do believe that placing my husband was the most difficult thing I ever did but now that it is over I know that keeping him home would have destroyed me and would not have changed the outcome in anyway. It sounds like younhave good support from your son.
I went into a crisis on purpose because I refused to place her before I had a crisis. That was stupid. I should have placed her earlier and managed myself better. I don't regret any of this much because all the ancilliary commentary is nothing to her going out the way this disease forced her to and her actually dying.
It doesn't matter what you do. It's going to rip everybody up.
But you can do something and I know you have this capability. Sit somewhere quietly and know you placed him last month. Don't include your daughter in those thoughts because that is a separate issue already there. You ARE going to place him. There is only one question: when.
Make yourself as best you can believe you placed him last month and try and feel that.
Your son is struggling too. You know that. But he can help because you need a thought out way of informing your daughter and that is going to be a hard thing to try and manage somewhat. That is certainly coming and no thoughts about how will be wasted. For one thing, it's not necessary to do both at once. One question though is will she react to not having been consulted first? Will she react when she finds out her brother did know first?
The nuances of what you have to face seem huge right now. None of these very things will remain nearly so important 'afterwards'.
You also have my email address and my phone number. If you want to talk, I'm willing.
I was given the same advice in my support group, bqd ... that everyone usually waits too long. So well before I thought it was time to place my wife, Clare, we scouted out facilities and chose the "where." As I could see Clare's needs becoming too great for me to handle, I placed Clare on a waiting list at the "where" and was told a room would open up within 2-6 months. Clare really declined very quickly at that point and, luckily, a room opened up in 4 months. By that time, it was getting extremely difficult for me to handle things on my own at home. It would have been very difficult for me had the wait been any longer. So my advice is simply this ... if you know that an ALF placement is where you're headed, you will know when the time comes. But when it does, you want to be prepared to act asap, so know which facility you want to place your husband in and get yourself on a room waiting list now.
Wolf, I still have your phone number but seem to have misplaced your email address. I guess I cleaned out my email too vigorously in my latest purge! Can you put it up on your profile temporarily so that I can have it again?
I like your idea of imagining having him placed, just to see what that feels like and whether I actually feel less stressed. We have a caregiver in today, its raining and I have no where to go so I will go down to my sewing room and think. Yes, I expect that our son is hurting too. He will be up to help me this weekend so I am sure that we will be able to talk a lot through, which may make us both feel better. And I don't think it will bother our daughter not knowing at the same time as her brother. She knows that I do what I can to protect her from herself.
acvann Placement options here are very limited, so it won't take long to check them out. I will wait to do that after I know what kind of facility the doctor will recommend.
Thank you all for your advice and support. It is so much appreciated.
Thanks Wolf, I have your email address now so you can expect to hear from me in the next day or two.
And I spent the morning imagining that my DH had been placed a month ago. Still some issues but my overwhelming feeling was one of relief and release. To the point that my headache disappeared!
It's up. Once Dianne was placed I really did have the freedom to rest and sleep. After I realized how much I really had gone down a hole, it was months of mental and emotional whatever that was before I started getting it together. Some of that was always going to happen because that's the way I am. But having the three years while qualified people managed her care was both necessary because I couldn't provide the facilities or the extent of care (24 hour) and was important to me.
I'm not sure how Quebec treats it, but federally (Canada) I got a letter each year from the NH and claimed 100% of that less 3% of that income.
bqd - I just wanted to share something another AD wife told me before placing my husband and that is 'it's time when you don't want to do it any longer - not whether or not you can'. I know I have shared this on here before but it helped me tremendously because, as so many others have said, I also did not like the person I was becoming with the grind and worry of caring for him at home. Now, sadly, his journey is almost at an end - he hasn't eaten any solid food in nearly three weeks and they are only managing to get small amounts of fluid into him daily.
I do wish you all the best because this is such a personal decision and it is difficult no matter what. Take care of yourself.
nbgirl - good advice, and if I had decided to place him when I didn't want to do it any longer, it would have been when I was diagnosed with breast cancer a year and a half ago. Back then I wanted to take care of myself, and only myself. But I didn't and couldn't and I managed to get through it. Hugs to you for what you are dealing with now as your DH enters the final stages.
Wolf, I just did a quick and dirty income tax scenario and Quebec is similar - a receipt from the nursing home is all that is required to claim his care (including the cost of a personal attendant if required) as a medical deduction. This will pretty much offset the increase in income taxes from the increase in RRIF payout that I will eventually have to take to fund his care. Of course I still have the law of diminishing returns to give me some grief, but financially we should be okay. Actually the financial aspect of placement is the least of my worries - I do have a second house (in my name only) that I currently rent to our son. Even after I pay capital gains on the profits of the sale, there would be enough to look after my DH for quite some time.
It's hard to believe but I think I'm on the same timeline as bdq. My son, who moved in 18 months ago to help out, and I had the "talk." It's almost too hard to write about--I've deleted a couple of posts already. But we're starting the process of qualifying for Medi-Cal and I'm searching for a full-time caretaker. The Ativan smoothed out his rages but he's needing a lot of help doing everything, even keeping balance. We've got an appointment with the attorney who handled the trusts and POA to help us through the process and I'm now looking for a geriatric manager to narrow the search for the best facility. Inside I'm screaming NO NO NO, I just can't imagine him with a bunch of strangers, sad and scared and alone. But I am trying to change my thinking from "I want him to stay home with me," to "I want the best care for him, wherever that might be." There's so much to do and think about -- I feel sick inside.
Thanks bdq. Back to you. I know you are hurting like me. I need to put aside all the worries and fear to get on with the business at hand. Big hugs back to you and to all of us sad spouses.
Bunny's Lamb, Do not assume that your husband will be "sad and scared and alone." That may be the case, but it may not. There are several possible scenarios and we tend to hear about the worst ones here because people who are looking for advice tend to post on this site. But there are probably as many people whose spouses have good adjustments. I hope your husband and bqd's husband are among those who do well. I was told in advance that this would be harder on me than it would be on my husband and that was absolutely correct, for he adjusted quickly.
P.S. I hired a geriatric care manager, as you are considering doing. She helped me a great deal with decision-making. She also went with us to the facility on the day my husband checked in. Many months later, when my husband inexplicably developed behavior issues, she helped me get to the bottom of the problem. Before you hire a care manager, make sure that he or she does not accept a commissions, finder's fees, or other forms of gratuities from facilities, since that creates a conflict of interest.
bdq, It sounds like the provincial health services in Canada give you more guidance than we get in the USA.
bqd -- Thank you for starting this topic. As soon as I saw the title, I knew I had to read on. I've finally decided I have to start seriously searching to place my husband. For the last two years I've used a combination of adult day care and some in-home help, but I think they are no longer effective for him. He does not want to attend adult day care anymore so he's with me 24/7 and I'm really at the end of my rope. The constant questions and emotional neediness are more than I can handle. He's become so confused about the passage of time that he's going to bed in the early afternoon so he won't miss the time when we actually do go to bed which is at 10:30 p.m.!
I knew two years ago that I was getting close to not being able to handle this situation, but I kept forging on. I feel I've lost so much of myself and I honestly feel this disease has brought out the worst in me which makes me very sad. I can handle the pee and poop but the behaviors make me crazy.
I have no clue how I will afford the care. I retained an elder law firm to file a Medicaid application for my DH last year. It was initially denied and it was refiled in February. But I feel I can't wait for the approval and will have to private pay for a decent memory care until he gets bad enough for a nursing home and then hope he'll get Medicaid. In the meantime, I will most probably have to return to work at the age of 64 in order to support myself. I can't even comprehend yet how I will manage.
Everyone has contributed great advice here and I wish all of us the best as we continue on this sad and difficult journey.
Elaine K, I too felt exactly like you when I placed my husband, that the disease was bringing out the worst in me. And I could not handle the emotional neediness. I am not sure how Medicaid works in your state but here one can apply only after placement. I placed my husband in August but never got on Medicaid until the following February. I was self pay until that time. It did take a while and the facility gave me 3 months but it took longer than that. If you can afford a lawyer spend the money. I ended up paying a lawyer and she did get the job done but certainly not an easy process. Some things that will help you save time is to put everything in your name, cars, house, cemetery plots, or anything of value that are either in his name or you own jointly. The reason being is he can have no more than $1500 total assets in order to apply My financial person told me a person who is sick should not own anything. I was fortunate because I took the bulk of $ and paid down on my house and funerals so did not have to spend that money on his care. Medicaid will not impoverish you as many people think. You can keep the house, the car and any income that you may have coming in. Thre is no limit as to how much you can earn.
CO2*, it's my understanding if your spouse is on Medicaid then the "well" spouse can only have about $110,000 in savings (differs by state), can keep the house if you can afford the taxes/upkeep/utilities. Not sure about the income though.
LFL Yes that sounds correct. I did not have that much in savings so for me it was a nonissue but I had heard somewhere that that was the amount one could have. Whatever one does to get onto Medicaid, I would encourage them to get financial help before applying so that you do not end up spending everything on his care. In my case I did the spend down after I applied. But one could do it before one applies and save some time. Medicaid allows up to $12,000 on funerals so you can spend a total of $24,000 on funerals for you and spouse. In my case I put the money into a funeral trust and then the funeral home just calls them when the bill needs to be paid. I will get whatever is left over since his funeral did not cost $12,000. The nice thing about a funeral trust is the money earns interest while sitting there. I had a friend who purchased a new car with her spend down. Yes you can keep the house, the car and of course they will not touch the well spouse's income. I own a small condo which will be paid off in about a year. I guess I am fortunate. I have a friend who just placed her husband and is self paying, but he has VA benefits. Nonetheless her husband had a business and she has all kinds of issues with real estate that was purchased and real estate taxes to deal with. She still owes a huge amount on her house due to a second mortgage that he took out that she knew nothing about (Lewy body dementia)and lives in a huge house that will be very expensive to maintain. I am happy with my little condo. It isn't much but it is home to me. I think applying for Medicaid was the most difficult part of my journey along with placement. Medicaid is a good thing but I felt totally vulnerable and very stressed until he actually was accepted. It is unfortunate people have to go through this. It is quite enough to deal with the disease itself but the fact that it impacts you so much financially is almost more than one can bear. But I did survive and you will too-- I liken my situation now to what it must feel like to be released from prison (caregiver prison) because it really is like being in prison. Your life is under the control of others and one is so restricted on what one can and cannot do. When one is released and suddenly you have all this freedom, it is overwhelming. Happy to answer any questions as I have been through it all--keeping them home, daycare, Medicaid, assisted living, LTC, Hospice, hospital and movement to another LTC where he passed.
Well, I dropped the forms of today to the doctor, rather than waiting until Thursday - I had to go into town anyway and there was a care giver staying at the house with my DH. I broke down into tears when I handed the forms (and a cover letter I had drafted which outlined my DH's current state, as well as my own). She told me I was doing the right thing. My own nurse practitioner happened to be there, and she also let me have a chat with her. She confirmed that what I am doing is the right thing - FOR BOTH OF US. My latest blood work showed that I am fine physically, so my exhaustion is not physical related, its stress related.
As far as a time frame for placement, I don't know anything yet, but I will keep checking around until I get some idea of what length of tunnel I am in.
What would be the least stressful for us both is if my DH could be placed at the ALF where he currently goes for respite. He knows the staff, and several of the residents. It might mean a move farther down the road as he requires more care, but it would be a good place to start and get him used to not living at home anymore.
We aren't wealthy but we also don't qualify for any kind of financial assistance so I guess I'll just do what I have to do, regardless of the financial impact.
I really feel for you bqd. This is a very hard stage. I remember it vividly. You are indeed doing the right thing for both of you. I am glad you received confirmation of that today from health care professionals. We are here for you.
I am feeling much better this evening. I spoke with a friend who "gets it" just a few minutes ago and I was able to behave "normally" that is, I could carry on a conversation without breaking down into tears.
I will be spending the next few days doing anything but thinking about the decision and what the next steps are. I did ask someone in our local community who has been in this situation how long it took from paperwork to placement. Her response was 3 months, and only that long if social services is dragging their feet. So now I have a rough time frame for the process, and I am comfortable with that.
Bonnie - I know how hard this is for you and my heart goes out to you. But after reading about you physical and mental symptoms I think it's time.
Two things: look into Involuntary separation this way his pension is spilt between you both and the cost would be less. Also the cost is dependant upon taxable income, what shows up on his income tax return, so if he is receiving veterans pension which is non taxable they don't use that in their calculations.
I just found out this afternoon when I got back from a support group meeting (topic was signs of care giver stress!!) that his doctor has completed the paperwork. So on Tuesday or Wednesday next week, when the doctor's office is open again, I will pick up the forms and take them to the social worker for the next step.
Amber, I have our income structured so that neither one of us is taxable, and in Quebec, we MUST file a joint return. DH only receives CPP and OAS with supplement. So there really isn't anything to split. I can make adjustments to my income if I need to in order to fund his placement, by taking a larger RRIF payment each month to cover the cost. And I still wouldn't be taxable because the cost of the NH is 100% deductible. And in Quebec, the calculation for what they will charge is done on total assets of the couple, not income, so even though we are not taxable, because I own a town house in the city and a lakefront property in the country, we exceed the maximum allowable amount for assets. But, the good news is that the maximum charge for LTC is less than $1800 per month, and unless I want to go with a large chain like Chartwell's or something (which I don't) the private homes around here are not that much more expensive.
I took my DH over for his week of respite care this morning. I have got his room stripped and will be spending tomorrow cleaning it so it will be fresh smelling when he gets home on Wednesday. I am looking forward to the rest of my week, doing what I want to do.
I picked up the paperwork from the doctor's yesterday and dropped it off at the social worker's. We had quite a good conversation. Apparently my next step is to tell my DH what is in the works. This is not going to be easy for me. The social worker suggested I stress that my health is at risk, that I need a bigger break, and we try something different for a month to see how it works out.
As I expected, the doctor has recommended intermediate care. I was hoping that this meant I could put him on the waiting list for the ALF he stays at for respite. But, on Monday my DH decided to go for a walk, (in his slippers) and a friend of his picked him up on a highway, a half mile from the ALF - he had no idea of how to get back. This ALF is for highly independent individuals, and other that not leaving the premises without notifying staff that you are going out, there is no security. And Monday was a holiday here, so the number of staff at the facility was reduced. So, it appears that having him here is out of the question. In fact, for his own safely, I am likely going to have to look for another facility just for respite purposes, never mind placement.
The social worker did make a call to a group home for me, and in the afternoon I checked it out. Its under new ownership, and there are lots of changes planned, but they do have a room available for my DH if I wanted to place him temporarily until all of the assessments are complete and his permanent placement comes through. They have more security in place - door alarms and they do a head count every hour. Its about 45 minutes from here in an area that my DH does not know, and when I told them about his walks, they agreed that they would make a staff member available to walk with him.
There is another facility, closer to home, I want to check out before I make any decisions, and I will call today to see if I can meet with them tomorrow. It also has an immediate vacancy. My concern with this one is that it is almost across the street from the ALf my DH has been staying at. Would this confuse him even more?
In the meantime, being a squeaky wheel and raising my concerns about our in home care givers has also caused some action to be taken. So I will be hearing today what the resolution is to get the in home care I have been entitled to.
I am in a quandary this morning about what to do. I think that I might contact the group home I looked at yesterday to see if they will take my DH for an extended respite - two weeks, a month? in June, until I can sort things out and decide what is best for my DH (and myself).
Boy, this feels raw. I'm going to hate this part intensely for a long time. I placed her at the end of 2011. I can tell myself I should have placed her earlier and I was certainly going to six months later or so because there is no because. There is only us and what we go through ourselves.
It was one of the few times in my life I was in perfect harmony - equal parts shame, anger, and desperation.
Now three and a half years later, she is for some time at peace with this and I'm going to be struggling with AD still for some time to come.
I made these choices and I live with them. I can dress it up any way I want but that is the bottom line. Placing or not and when doesn't make it into the top ten for me these days. It's one of the parts I resent deeply. I don't spend time there because I've been through the ashes and fixation on it isn't in the cards. It was part of the cost I paid and while I don't fixate on that either - I'm not going to be the bum boy of Alzheimer's memory movie starring everything I did wrong. Not happening.
[edit] I talk like that because it tries to happen. It tries to prey. Maybe I'm the only one.
I also hear you Wolf.... I have many parts of our AD journey that I deeply resent and at times can make myself feel shamefully guilty of when I'm in the right (or wrong) frame of mind. But what good does that do anyone? We can't go back....we do the best we can at the time we are going through each experience of the whole ugly journey. I did not come to the point with George where I had to face the placement question, because he was diagnosed with an acute form of leukemia, and died at home under the care of Hospice 6 months later..... However, the choices we all have to make with our loved ones are gut-wrenching and we do a lot of second guessing and doubting ourselves. bqd, please continue to let us know how you and your husband are doing; remember that you are doing the very best you can for yourselves....and in many cases there are no right or wrong answers.
bqd, There are so many factors to consider and it's hard to know what's most important. My husband's facility is only 20 minutes away from our house and is also convenient to other locations. That enables me to visit him almost every day. But . . . even if his facility were father away or in a less convenient location, I would still choose it because it is an excellent facility. As far as I'm concerned, whatever is best for him is most important.
I hope you do not feel the guilt that so many people do when they admit their spouses to LTC. Strangely, I did not feel guilty when I placed my husband, although maybe that's because he adjusted so quickly. However, I did feel terrible grief over his absence from our home and I still feel that loss, although not as keenly as in the beginning.
bqd, I'm in agreement with others here. If you decide it's time, then it's time - and try not to let guilt/shame enter into your thoughts. I placed my husband 2 years ago when he was constantly a flight risk. At 68, he was too strong for me to try to contain in our house and I wasn't about to physically battle him. He was not comfortable there anyway. He stayed in his room with the door closed (talking to pretty girls on magazine covers) and would only come out to eat sometimes and/or grab ice cream from the freezer and take it back to his room. Everything outside our doors seemed to be threatening to him. He was not at peace or safe - and that ended up being my line in the sand.
As far as telling your husband, I never did tell my husband. We went to the facility a week before I placed him for their evaluation (over lunch). He met the staff and liked his time there. When we went back the next week, he just said; "oh, i know this place. We've been here before." and walked right into the facility. The staff met us at the door and walked with us to his room. At that time, I told him "oh good, our stuff is here. we live here now. this is your room and mine's down there". He questioned why a few times over the next several weeks and I always told him it was just too difficult to take care of our home anymore and here they did everything for us. I would just show up to visit with him (without coat or purse) and then, at dinner time, I'd leave him in the dining room and tell him I had to go back to work. I've been using this strategy for 2 years now. Personally, I am comfortable fibbing to him, because I could not fathom telling him that he cannot live in his home anymore because it's too hard for me (when they have no comprehension of the effects of this disease on anyone around them). My goal is always to make him feel content and safe and so far, it's worked.
If you choose a place across the street from your current Respite facility, he probably won't notice - at least not for too long. I hope that the place you choose understands dementia and how to interact with these very vulnerable people. Sending hugs and support your way as you go down this road.
bqd, Totally agree that if you feel it is time, then it is time. I placed my husband in August of 2013 because of the emotional toll it was taking on me. It was not the physical caring as he was ambulatory and still could toilet himself but I had no privacy in my own home and felt like I was being suffocated by his emotional needs. There was guilt I think because my husband was aware of what I was doing, and I knew he did not want to go (but then who does). Many times I would cry and tell him I just could not take care of him anymore. He accepted that but he never really understood what it did to me. After a while we both accepted it and fell into a routine visit schedule. As my children reminded me, I was faced with 2 decisions (to place or keep him home) and neither decision was good. He passed almost 3 weeks ago and I am still just trying to get through each day. I do not think I knew the weight that I was carrying over the past 7 years until it was lifted. God bless. Just do what is right for YOU--whatever will make YOUR life easier. When we place them, we are still caregiving but just a different venue.
The social worker was insistent that I tell my DH, so last night after we got home from picking him up at the respite ALF, I did. With tears. And I have mentioned before what a sweetheart he is. Well, he said he had been thinking and praying about the same thing, and wondered what he had to do to check himself into the LTC facility in town? So we had a discussion about what his doctor was recommending and about what steps needed to happen.
But what a difference a day makes!
This morning the social worker called to tell me that they had a respite room available for my DH at the home that is specific for dementia patients (secure) and when did I want it for, since he would be considered in respite until they managed to get all the paperwork done to place him permanently. This is a small facility (less than 12 rooms) and only a 20 minute drive from home. So I settled on June 1st. She called back this afternoon and said it was actually possible that they might have the paperwork completed before June 1st! Next week the occupational therapist is coming over for her assessment, and the social worker will be meeting with the head of the facility to fill her in on my DH's background.
Nothing happens, and then everything happens at once! I went out today and bought some label tape and a pen to mark his clothes so I'll have them ready by the time he is admitted.
I'm glad to hear steps have occurred. This is a long experience with it's own issues. I never had to face hearing her ask me if she could come home. My heart goes out to everyone who goes through that. There were lots of different things though like trips to emergency. There was at the same time the reality that time had come back under my control because I could sleep and eat and move around as I wanted. The problem was that I think that's when I truly grieved and that's when I was at my low ebb. It got better every year because I didn't just get used to it - to this day I'm trying to make something out of it.
bdq, It sounds like your conversation with your husband went just about as well as it could have. It's great that he is able to be part of the process. Knowing that you are nearby and that you are not abandoning him should go a long to in helping him to adjust.
bqd, so glad to hear that your conversation with your husband went well and what a blessing that he was thinking along the same lines. I'll keep you in my thoughts as you go through the placement process.