As I have mentioned in previous post, due to financial reasons I will be bringing my husband home from ALF soon. I had a consultation with his doctor today, about trying to get help through Hospice. She is willing to help with any medications that need increased or really whatever she can do. She is calling the appropriate people today. I also put in the 30 day notice to the ALF that is needed. I have numbers of the aide that really done well with him...she had to leave due to medical problems with her feet. So I guess I have the ball rolling. I have prayed regarding this decision, and from the signs I am receiving, I think it is the best thing for both my husband & myself. I have struggled from day one, as to whether placing him was the best thing, always knowing that my savings would not last forever. At the time it was...due to behavior problems out of control. With medications & declines, now I think/hope this is the best thing. Please, I would welcome suggestions. I have been reading past post on everything about care giving at home...it has been a year since I was a 24/7 care giver.
Oh wow, I don't have any really good suggestions but when you said that it has been a year since you had been a 24/7 caregiver the first thing I thought of is having the prayerful desire to have him at home and things working out in that direction would be a good start in being a good caregiver. All I can think of is accept all the professional help that is offered at any given time. Also TAKE CARE OF YOURSELF!!!
kadee i hope things work out for you with your decision. maybe if you could stay 24/7 overnite with DH to get an idea of his care and try to do it on your own? i know not orthodox but you may get an inkling whats involved since you havent been round the clock caregiver for some time. while i know money issues can make the decisionmaking for us at times, i do hope you can get your aide on board now prior to bringing him home too so she can start the day you come home. getting all the necessary tools in place as well, ie hospital bed, wheelchairs, etc. hospice will be a decent help for you too. good luck, let us know how its going. divvi
I think as great as America is, this sucks that the reality of this disease leaves you with your mate gone and your savings too. You work your whole life to build your savings and then the insurance companies and medical care take it all away and if anything is left after you are gone then Uncle Sam wants his too. They should rename it Job Disease.
Kadee, I wish you luck with your decision. I know most of my friends and family thought I was nuts when I brought my husband home. But, only I knew that in the condition he was when I brought him home, I would have none of the issues that caused me to have to place him in a facility in the first place. He lived for another three years after he was back home and I saved myself almost $250,000 by having him at home. Just remember that you always have options....and just take one day at a time.
Moorsb, you are right....this disease sucks the life out of everyone it touches.
Thank you to every one for the support. I am meeting with Hospice tomorrow at the ALF to evaluate him. If he qualifies, they will begin support while he is still at the ALF, so when he does come home it will just continue. Hopefully, he will qualify. I hate this disease!
Just know that Hospice comes in for an hour about 3 times a week. They are wonderful in that they do bathe and clean up the patient (about an hour each time)...and a nurse will check on him once a week..and stay about 30 minutes. It's in and out .... No 'in home care" the way a nurse's aid would do if they were to be included in the in home caregiving plan. Hospice doesn't sit with them...feed them... and give you respite while you rush to the store. They do provide a volunteer if one is available who can sit at the house for 3 hours or so once a week to afford this help, but they are NOT nurses. ASK Hospice what you can expect. It is different in every state, I've learned. Good luck. I do agree that end stage is somewhat easier to handle than the violent earlier stages with the incessant questions, shadowing, bickering and temperment.
I think you can do it!!! But, do NOT try to do it all by yourself. You will need help, even if it is 2-3 hours every day of the week. Briegull does it and it works! She has a young man come in to help him in the morning and evenings... Her DH watches PBS programs on TV and has a toy SingALong to play with... Whatever makes them happy. She is a great example of how to make it work!
I do understand that I will need someone other than Hospice. As I have mentioned in a previous post. There is an aide who no longer is able to work full time at the ALF. She does really well with my husband, I have her phone numbers. I realize this is not going to be easy.
Kadee--here's hoping you will find this solution a good choice. Keep posting and ask our experts for their advice! It seems to me that sometimes, home care can be the best all-around option, as long as you are able to prevent burnout by having enough help.
Sending prayers your way. Just remember to take time for some "ME" time. When the "halo" slips but it right back on and start fresh with no guilty feelings. We all do the best we can and that is good enough.
I met with Hospice today. I really don't think my husband will be accepted at this time. The lady I met with, had never dealt with someone as young as my husband. She was going to need to speak to someone higher up than she. Also, since he is still ambulatory with help that may be another reason for denial at this time. She is going to get back with me. I actually thought it was a shot in the dark, however, thought I might as well try. Of course he is still coming home.
Dear Kadee, sending you my love. As you might remember, I took my husband out of the ALF last July. He is still living with me. We have been working with meds to adjust for his behavior, especially with caregivers. He is declining, has become incontinent and I have to find creative solutions to all of the issues we face every day. I will never forget how awful I felt when he was gone for that month and how much he had declined due the meds he was given to adjust to the ALF. Most of the time he is happy and content. He has a sense of humor, likes to eat good food, is affectionate and loving. I shower with him, help him get dressed, change his depends. I have people come in 6 x week for 4 hours so I can get out to run errands, meet friends, get a massage. I try to make sure that I get enough sleep. I found that if I don't sleep I get depressed. I wear an eyemask and earplugs and hope for the best. I can deal with poop and pee issues; it is harder for me when he gets angry at me, or a couple of times, didn't know who I was and got angry at me for trying to get him ready for bed. Now I make sure I make eye-contact, and give him lots of kisses, before I undress him. I'm learning something every day. Nevertheless, from my experience, sleep is the most important for a caregiver.
I believe Hospice has to follow Medicare guidelines. There are some for-profit Hospices that might be able to accomodate your husband. Still cheaper than ALF.
Kadee--I'm not surprised that the hospice rep never dealt with someone as young as your hb. My husband's age has been an issue from day one since dx--our internist and some of the aides had never had an EOAD patient; the adult day programs weren't attuned to younger clients; I am expecting his age to be an issue with potential respite care/placement as well. Makes things even more complicated to deal with.
I will be bringing my husband home either March 12th or 13th. I haven't heard from Hospice yet. I did speak with the aide that I plan to hire to help me. She no longer works at the ALF, due to a foot problem which prevents her from working full time. She does really well with my husband. I also have phone numbers of a couple other aides that work at the ALF. Marilyn, I have had the same battle with my husband's age.... 3 different Neurologist told us he was to young for dementia. I never could understand there comments when his grandmother & mother both passed away from dementia. I had a terrible time finding supplemental insurance for him since he was under 65. Only United Healthcare through AARP, but, I pay high premiums.
I had my DH placed in a ALF last July. I slid into the abyss of a major depression, was destitute and using food shelves for myself, due to the $1200.00 co-pay. Obviously, I couldnt afford it. I observed his skills were poor for ALF, the facility had fired the activities director same week my husband was placed. Hence, not a single activity was offered for the 3 months he was there.
Due to my intense missing of him, deep poverty and the belief he got better care at home, I brought him home.
Now..8 months later, he has declined rapidly..my depression has become so bad I cannot work. I am in intensive therapy and under the care of a phychiatrist. This has brought me to my knees. I am going to die if I don't make a change.
Like most of you, he has been the love of my life. It is like severing my own arm and leg to think of letting him go. The pain of watching him go inch by inch is beyond anyone understanding..except all of you. Yet, he has days of being a little more with it...that makes these decisions even worse.
I have come to the conclusion, probably a few years late, that it is inevitable that he needs to be placed in a facility. I wish I had not brought him home from ALF, he was starting to adjust well. It was my selfishness and so much a financial decision. I should have transferred him to nursing care, since he couldn't keep up with ALF.
Now I am stuck with that decision and brutal pain of seperation again, 8 months later. Food for thought..just my experience. Thought I could stick it out til his passing, but I can't. He is only 64 and could live a decade or more. sheltifan
I think with caregiving, it is the thought of "death" of our LO that is on our minds day in and day out that really drags us down emotionally. If it truly was "just an illness" we could all get through it much better. But the daily thought that the "we" in our vocabuly is gone, replaced only with the thought of "the end" hurts our soul on a daily basis, a deep pain that is so unbearable. I pray that you find the right help for your sadness and depression and daily grief that is haunting you. The strength is in you. You are important too.
Regarding bringing, or keeping, a LO home - How do you handle the IRS with regard to the hired help. I have hired a woman independently (not through an agency) who does this, and other, work for several people. She works for me an average of 7 hours a week. I think of her as an independent contractor. Since I keep track of what I pay her and deduct this from my income tax, how do I report this to the IRS? Do I have to take out anything for her taxes or pay any social security?
marsh--I use an Agency for hired help so I don't have to worry about the taxes and FICA. I think you should start a new thread with your question, I know we've discussed hired help a lot, but don't remember that particular issue. I think the independent contractor thing is a grey area; also, I was advised by an attorney who handles worker's comp cases exclusively that if I hire privately, at a minimum I should add a worker's comp rider to my homeowner's policy in case someone would file a claim saying they were injured on the job (I know that you and your wife are in a retirement community so that may not be necessary).
I just received a call that my husband has been approved for Hospice. I am meeting with a representative this afternoon at 3:30. I was so surprised, after my first meeting I was almost certain he would be denied at this time. The lady I spoke to this morning told me she fought for him with her corporate office.
Boy does this subject hit home,wife was placed last June an I thought she was too good to be in ALF but too bad to be home,I debated on bringing her home too as it was killing me to see her there,having two daugthers that are RN's telling me it was killing me to try an take care of her was the determining factor,I didn't bring her home an the last week or so I can't believe how much she's gone "downhill" which I will always blame on myself ,I think they gravitate toward the people they live with an these poor souls are just warehoused until the inevitable,since its 70 miles one way its getting to be a two hanky trip,noone should have to go thru this
So sorry you are going through this old don. It's too bad she is so far away but you need to take comfort in that you did all you could and the best you could for her. Take care of yourself and God Bless.
ol don, Please do not blame yourself. You and I both placed our spouses because we knew at the time we could not give the care they needed. My husband has also declined, but, I can't say it is because he was placed or just the disease. If you really think about it, you would say the same thing. I go every day & he still declined. Due to finances I can no longer afford to keep him there. With his decline, I think/hope I will be able to care for him.
We all must remember that when we have to place our loved one. we are not throwing them away, or shirking our duty. Our job as a caregiver still continues. I go every day, sometimes twice a day. I closely supervises his care, meds etc. I feel like I am still his caregiver. I still go up and down depending on how he was the last time I saw him, my heart still breaks as he declines. But I am not changing his Depends, being hit and the other things that were killing me. I feel this is best for both of us.
I just received a call from Hospice. After evaluating my husband again this morning, he no longer qualifies for their services. Reason: He is able to get out of a chair by himself, true he can only use one arm, but he can. As I mentioned in a previous post, I wasn't expecting for him to qualify after the first evaluation. I was shocked with yesterday call & I am kind of shocked with this call.
As for a third evaluation....like "two out of three"...maybe he won't be able to get out of the chair alone tomorrow.. Odd, since in our case, DH COULD get up on his own and get the walker next to his chair on his own...and scoot to the next room. You realize on this site just how different each and every agency/state is.
Hi Kadee, I have been following your story throughout since your husband is my husband's age and the both have the diagnoses of FTD. I am still caring for my husband at home and I must say it has gotten easier in ways and difficult in other ways. Because of the decline he is now severe...incontinent of both urine and bowels...does not wander...not aggressive.. He shows agitation from time to time because I think its because he cannot tell me when he has to go to the bathroom I keep a texas catheter which has worked wonders...there is no way you can do without it.My husband cannot comprehend at all so this is what is difficult because you have to look for other ways of trying to figure out what they need ..he still talks but it doesnt make sense of what he is saying. He sleeps in a hospital bed and on the other side of the room I am in my bed this way I can still be in the room with him. He does wake up frequently at night even with the Seroquel dose it seems to work for only about 4 hours and then he is up not walking just talking....talking...talking. I do have someone who comes in M,W,F, and showers him and I do the other days. The biggest adjustment is the laundry and loads of it and the sleeping or should I say not sleeping. Depending on your state there should be a Office of Aging will assist you with needs you may have. Also you may want to consider a live-in which I am in the process of doing just for about 2 or 3 days a week it makes sense money wise and then you won't be so overwhelmed. Everyone that I speak to say they cannot believe I haven't placed my husband as of yet since he is now "Severe"
Dear friends, I placed DH in late July. He has adjusted althought I'm not so sure I have. I go see him nearly every day. Even so, there are times when things go on at the ALF that make me worry that when/if he needs MORE care, I'll need to either hire a private helper to be with him OR move him. When I visit, I leave in one of two frames of mind--- That I need to find another place for him OR that things seems to be going well enough 'that day' and I feel a bit more at ease. Its a toss up. I believe the facility should be doing a better job in several areas..but the bottom line for DH is that he seems settled, the physical environment is nice..and for right now, he is safe and the arrangement of the place is simple enough that he can 'find' the places he's wanting to go. One reason I went ahead with placement was the fact that he stayed "LOST" in our home. Every door was not the right door to the room he was trying to find. He couldn't find his bedroom..his bathroom ..and ultimately couldn't find his chair. He went outside and couldn't find how to get BACK into the house. Anyway, I understand the financial circumstances. Its doubtful that costs for their care will ever DECREASE. The day may come when I have to bring DH back but honestly not as long as he is still able to get out and get lost. On the other hand, our home would have to be completely rearranged somehow so that his 'world' only consisted of one or two rooms. I don't know if there's a best answer. But applaud you and everyone who can keep them at home and stay mentally and physically healthy at the same time. With the right kind of helps, we see that it can be done..
Judy--my husband also cannot find places in the house on his own--the bathroom, for instance. So the aides and I show him where it is; same with the bedroom, chair in the kitchen, etc. When you say the layout of the ALF is much simpler, is it because everything is on the same floor and your house isn't? My husband can't find places due to agnosia; I can't imagine that another environment would make much difference, but who knows? He hasn't really tried to get out of the house much, but I plan on getting keyed deadbolts if that happens. I doubt he could get around those if I have the key!
I will be bringing my husband home tomorrow, I think I have everything ready. I have the aide coming on Wednesday for the first time, however, I can have her earlier if needed. I want him to have some time here before I leave him with her. My daughter-in-law will be helping...my son has a temperature of 103 so I don't think he will be able to help. Wish me luck.
Marsh, I am not the expert on how to do all this stuff but I do know that if you should have workmen's comp ins in case someone gets hurt. I would think if you are going to report the salary you pay this person, you also have to see about what has to be reported for their SS... My lawyer brother took care of all this stuff but I do know we had posted in the house where it could be easily seen the notice of workmens comp.
Maybe a lawyer or CPA could assist with these questions.
Marsh--there is a lot online re "nanny taxes" and I think an aide is a similar situation. You may recall all the people who were nominated to be Supreme Court Justices who didn't follow the rules re their household help!
I brought my husband yesterday. So far, so good. Only thing is he would not go to sleep....at the ALF, they let him walk until he finally was exhausted around 3-4:00 in the morning. He was so tired last night, however, would not sit still long enough to fall asleep. I ask on another thread, for suggestions that might help. He is still asleep now.
Kadee, I'm thinking of you and hoping that things settle quickly and easily for YOU. Glad you have an aide and a family member to help out. MarilynMd, I noticed that you asked about why our house was so difficult. It never occurred to me ntil DH began having trouble but our home is FULL of DOORS and we live in the country. There was a fear that he would get OUT and get lost. At the same time, if tried to LOCK him inside, he would have torn the door off its hinges. He wanted to do things outside that were unsafe and I couldn't stop him. If he was determined to do something, there was no reasoning or stopping him and it was frightening. He has agnosia as well and this is getting worse now. But the simplicity of the environment at the ALF has made it possible for him to function with less confusion. He needs little or no assistance with finding his clothes, personal items and snacks. He can walk outside his room and turn left into the large living/dining area. If he turns right, the hallway is longer but ends with an outside secure door. Even if he wanders, there is only one hallway and the open living/dining area. There are only 17 rooms. The physical place is very good.
((Kandee)) I hope things stay on the good side. Lynn had his nights and days mixed up. I tried to turn it around, but nothing I or his doctors tried worked. Eventually I just got use to staying up to supervise him. He has been in the nursing home for 2 years now, but STILL I am awake most the night. I hope you have better luck than I did. I have been thinking of you A LOT!!! ((hugs))
Judy, I can see where this would bring comfort to your husband, and a huge sense of relief for you!!! Lynn was also the type who would have torn the door off if I had tried to lock him inside!
Judy--thanks for the explanation--now I get it. I think you are right, navigating a regular home is very complicated for someone whose brain is compromised. I think you have probably lowered your husband's stress level considerably by placing him there (and yours as well)!