When I read about what other members are going through with their LO's still at home and all the challenges they are faced with I can't relate to it any more. The bone tired, constantly on the look out for what are they getting into, incontinence, aggression, the when is this going to end, when do I get "me" back and stop living in limbo. For me now it's like it was all a bad dream.
I know I am healing and moving on. I go and see him and make sure he is well taken care of but now it's on my terms. I also know there are more challenges coming but it won't be me doing it all alone now.
Are the other members with their LO in care or have passed feeling the same....did we really go through this?
Amber, I am sort of where you are. It was a year since husbands placement and I feel like I am moving on. Each day that passes I am more and more grateful that I placed him even and including the Medicaid torture. Most of the guilt has subsided because I know he is well taken care of and when the time comes I will get hospice involved and iT is such a relief to know that I no longer have to carry this burden alone. Occasionally I bring him back to the house for a few hours and it is then that I experience the feelings I had before placement of the constant vigilance etc. I honestly don't know how I did it. I am always grateful when it is time to take him back. He had declined quite a bit in a year and now cannot make a coherent sentence but still knows me most of,the time. If there is anyone out there sitting on the fence about whether to place or not to,place and you are over extended and exhausted and have no life, please please do it. Do it for yourself. Yes the decision is hard very hard and you will experience the gamut of emotions but they will subside and you will find yourself on the other side of the fence having a life and saved yourself and your sanity.
I'm in the same situation as Amber and CO2 - DW has been in LTC for one year. Before that the only break I got was when she was at adult day care for a few hours. Now I seen her almost daily, but on my schedule. I can take part in various activities at this retirement Inn and work in the Free Medical Clinic. I take DW to a meal in the main dining room occasionally, usually when some family member or friend is visiting. I also take her to music performances they have here since she has always liked music. Last spring I spent a week visiting our daughter in Florida, and plan to do the same this winter. My main worry now is whether or not the money will last longer than she does. If not, I am making preparations for Medicaid if necessary. Other than Alzheimer's she is in almost perfect health - much better than me.
My husband has only been in LTC for 3 months and I already agree with what CO2 said. I cannot believe now that I ever was so bone tired, as Amber describes it. Sometimes I would start to cry just out of exhaustion. The whole full-time caregiver thing was just way too much for me. And my husband was not even incontinent and was for the most part cheerful and cooperative. (On the other hand, when he was at home, he did take off down the street like the Ever Ready Bunny, in the afternoon he often got agitated and demanded to "go home," and in the middle of the night he sometimes woke up and got dressed.)
I am almost embarassed to admit that I do not feel guilty. I miss him terribly and I feel great sorrow that our domestic life together is over. If I let myself think about how bizarre it is for us to be separated, I get upset. But that has nothing to do with feeling I have done something wrong. Maybe I would feel differently if he were in a facility that I was not comfortable about or if he had not settled in so well.
I agree with all of the above. My husband has been in ALF for almost a year. I too was bone tired, and cried at the drop of a hat. I see him everyday for 1-2 hours, toilet him when I am there, shower him if the aide cannot come, and do his laundry. When the aides tell me he has been up all night it is a stark reminder that I did the best thing for both of us.
I am still tired, though. After a visit I often come home and crawl into bed, because just being there and seeing this disease up close and personal is exhausting.
Amber, funny you should mention you no longer feel like the group who still have spouses at home. I felt exactly the same way about a year or so ago when several new members were dealing with the imminent placement of their spouses. There were several discussions about decisions to be made, feelings of guilt, should I do this, transition issues for both spouses, etc. It seemed like all those members who still had spouses at home were no longer part of the dialogue because our realities were different. For a long time I didn't contribute to the discussions because I absolutely could not relate to the angst of placement and the subsequent issues involved with placement. But as our wise Carosi2 said, this site like many others morphs based on it's members needs and issues and from the time she became a member the needs of members and the issues were always in flux.
I would ask you and others to continue to contribute to the threads where you can offer your advice and/or consolation based on your journey and experience. That's what I did when so many were facing the placement dilemma. Now you can offer advice or comfort and support to those of us who still have spouses at home. Remember, support was offered to you when your spouses were home but about to be placed. I for one would welcome your ideas, suggestions, support and comfort as we continue the journey we chose, that's what I believe this website is about.
Hi LFL, I just read your comment and signed back in to say that I don't think any of us who have posted on this thread meant to say we are not part of this membership. I understand what you mean, though. When I first read the title of Amber's thread, I though it sounded kind of exclusionary, (if that is the right word) but when I read her comment, I realized that was not what she meant at all. She meant (I think) that she was now living in a different world. And that's what I meant, too. If you thought otherwise, I apologize.
I do think that this particular thread has great value. My goal was always to keep my husband home for as long as possible. (Given my particular abilities and demands, that goal was unrealistic and was based on my ignorance of what was involved.) So when I envisioned admitting him to LTC, I saw it as a last-ditch maneuver, a failure on my part, and a tragedy for us both. I was amazed when the drama did not unfold that way. The comments on this thread would have shown me in advance that my dire view was not necessarily accurate.
I do not think that our different paths should separate us. I always read all the members' experiences with great interest because I think we are all in the same boat. Or as bqd said, we are like people who have all been drafted into the military. In my view, the fact that some of us are on active duty, some are in the reserves, and some are retired, does not matter. We have all been in combat.
Seems I wasn't clear what I meant with my title....I know we are all one big group that is going through this journey with different dementias. What I was referring to was the sub groups....LO with new diagnosis, LO at home, LO in care, LO that has passed.
Now that he is in care I'm having a hard time remembering how hard the journey was when he was at home. I have moved into the next sub group and now I am learning about how live my life having him in care and what it all means with him still being here but not really here. Plus all the challenges dealing with the facility and staff there.
I agree with LFL that everyone here regardless of their current status has something to contribute. My husband is dead for almost two years, and the daily care/turmoil is still very fresh in my mind. I can clearly remember how exhausted I was when he got up at 4 am and wanted to go for a ride. I can sympathize with those who are still doing poop patrol. I read the thoughts and concerns of those who were faced with placing their loved ones, and I certainly empathized with them. Yes, it is as Carosi2 said, those on this site will keep changing, but hopefully we will all still feel like part of the group, and keep contributing where we can.
Myrtle, I love your description of the segments of combat we are all in.
It is odd you bring it up. I often don't feel much reason to come because the ones posting are mainly the ones who spouses are placed. Nothing against Joan, but I think in some ways the 'atmosphere' of this site changed to those who have spouses placed and the turmoil of that. Or to me it seems most of those posting are of the placed group.
I know in the past someone has brought up the change in the site, how there were very few with their spouse still at home posting. Maybe they are lurking, not wanting to post, or maybe we have fewer of us with our spouse still home. As before, just more growing pains!
There is a special section on this message board for those whose spouses have been placed - it is a "sticky" at the top of the page titled "caregiver with spouse in residence". There is also a "sticky" section for widows and widowers. The entire site and message boards are for everyone, and I have tried to provide sections that target special situations such as spouses who have placed their husbands/wives, those whose spouses have died, and the general population of those with spouses at home.
CO2...I like the reference you made of the "Medicaid torture". I am making the call today to begin the process. The forms to fill out, the evaluations, the probing into our financial lives etc. I am afraid....very afraid of this next step! I have 2 main fears: all the work involved (because I just don't have the energy for it) and the fear of rejection (them telling me that I must continue on....on my own). I have my elder care attorney and his staff that say they will help me with each step along the way. Still, scared silly!
Joan You have done a great job of giving each group a special place to go.
To everyone else I am finding the same thing with my new life. I visit, I take him out but it is on my terms. He is very demanding and pushy wanting his own way and up until a few weeks ago I gave in and he just ran my life. Niw I just gently let him know that things have changed. He complains a bit but not so much now.
The LTC he is in never calls me to ask for help caring for him and I only here about the upsets he has caused if I ask for a report, otherwise they take care of all the needs.
His memory is going more but they are still having to rake him to the quiet room to talk and calm him down.
I remember very quickly how difficult it was to have him living with me and I give thanks everyday that he decided to go and live there.
I had to leave my support group because I kept being told by the facilitator that my situation was different. I felt like I was not fitting in anymore. It was so frustrating and hurtful, but I am better now.
I find the atmosphere has changed here but I think it is because many of the originals are in a different situation now and maybe just need time. They have so much to offer and maybe they will be back.
My DH is still at home. I like to read post of all, from new memebers, ones at home, ones starting process to bring in help, ones looking at placement, and those with LO placed, or who have passed on. I think that all the questions and comments have helped and encouraged me no matter where I am at this time. I do not post a lot and lurk almost everyday. Sometimes it is to much for me. But it is a place I come to and know I am not alone in how I feel. It helps with the guilt, and decisions I need to make. So I hope no matter where you are in this, you will keep posting. I have someone coming to help once a week. Looking at getting guardianship and placing by next spring. I can see that some LO have already been placed and have same issues as my DH. I am ready for a life and not to be bone tired.
Aunt B, your feeling about Medicaid are very normal. I had a lawyer and a financial assistant helping me and I still had the same feelings. Just do what they tell you and you will be fine. My biggest fear was that I would be destitute after it was all over. I have a lot less but I am not destitute. My financial person kept telling me they will not impoverish you and that is true. I have my house, I have my car and the knowledge that he will be taken care of which is the most comforting. I so admire people who choose to keep them home but I knew early on that would not work for me. As time progressed I became more and more sure of my decision. You will have the energy for it if you just take one step at a time and not think about the next step. I would be happy to be with you as you walk through it. You can email me any time. The process is a little different depending on what state you live in so I can only share my experience but I know it does help to have someone who has gone through it.
At times I felt like part of the group and then other times not. It was hard for me. DH was dx and passed so fast, less than four years. Not many like me. I know the last year of his life I felt like I did not belong in the group. I was feeling things that others were not. Once you are on Hospice, things just seem to change in how you think.
I guess it is the nature of Alzheimer, no two patients are alike. Thus no two caregivers are alike. So it would seem natural for the ebb and flow of the site for us to feel part and not part of the group.
No matter where we are on this journey, we all need each other.
CO2, thanks so much for the encouragement. I will depend heavily on the staff at the elder care office. Heaven knows I have paid dearly for their services. If I get desparate you may hear from me. Thanks so much for the offer. I am in TN by the way. Very different here in that we have the Choices program. Basically, 3 tiers of service funded by Medicaid. One level is very basic...they will pay for in home help up to a max amt of $$$ per year. Next level is more money yearly to assist with in home care if client has more need/deficits. The third level is for those that are placed. The ones with the biggest needs. My attorney says the client has to be "half dead according to the state of TN" to qualify for that level. That is what has me so scared. That gap between what I can provide (according to THEM) and what is available to him. He does have a very successful appeal record. His record is really good. Hence, the very high fees that he charges. Oh well, I would have had to spend that $$$ down anyway. I truly am one tough lady. But, this monster of a disease is literally breaking me and my spirit!
I'm lurking. Probably FTD, undiagonised. Not much change for my DH. Becomming slightly more forgetful. Dr. has him on good meds to control outbursts.
I still read and will contribute more when I have more to contribute. My last discussion if I recall was about the new meds for DH and the wonderful difference they made for his outbursts.
Being in the 'after' I don't peek in much anymore. I am in a much better place now. No longer have to make terrible decisions. Looking back I realize I did the best I could and the guilt of the 'would haves, should haves and could haves' is no longer valid. My heart does ache for so many of you.
I read, but don't post a lot, I guess because Dan's disease seems to be moving soooo slowly. I don't have much to offer right now, pose an occasional question. We're still in a better position than many of you are, but it isn't a GOOD position - the every day annoyances, repetitions, frustrations. There are 'nasty" times, but no over the top outbursts. His physical health is pretty good, recently diabetic (within the last couple of years) & he'll be 80 in February. I don't even have the physical care of him yet & I know that has been a breaking point for many of you. The emotional turmoil is bad enough, don't know how I'll handle the physical part of it (that is, if I outlive him! He has longevity on his side-mother, aunts, uncles lived into their mid-90's & 102!)
Anyway, I guess I feel a little "out of it", but maybe there will be another wave of similar situation folks along soon - not wishing THAT on anybody!