I am thinking very strongly of bringing my husband home. I have thought & prayed about this decision. For financial reasons I think I am going to need to. It is taking all of his pension & SSD for his stay there. I am living off our savings for now, which is dwindling away. He is in good health other than the FTD...which would mean he could fight this disease for another 5 or more years. By that time I will be penniless. I am thinking, I can turn the extra bedroom into his room. Purchase a Twin size bed, add a chair & T.V. I would still take him to Daycare, however, bring him home at night. I know my kids will throw a fit, however, I think I have learned what makes him agitated. Showers for one.. I have learned that he doesn't need a shower each day, so if I could get him to take one shower a week that would work. I have also learned to back off when he doesn't at the time want to do as I ask. He is on Seroquel & Avitan when needed. At the ALF, they are not giving him the Seroquel as many times as prescribed...they would like him to be able to participate in activities, however, he is not able to. He has been violate with me in the past, however, he was ill both times. I would appreciate any comments??? Am I crazy?
First question I have is about your kids, are they at home? If not why should they toss a fit unless they have seen you injured in the past. That would give them major cause for concern. Additionally, if you are facing "tight sneakers" as my husband would say, can your kids help in anyway with care either by spending time helping you or financially?
If the doctors say it is safe for you to bring him home under the conditions of medication being used as directed, then you might try it on a trial basis, keeping a space for him should this not work out.
I wish there were easy answers but there are none at any step of this sad journey.
Kadee, I was where you are but it was a difficult decision to have the medical community sign off on because dh had tried to kill me on several occassions. DH also has FTD and can be very aggressive. We just increased his seroquel to 300mg from 225/day due to new aggression. DH is home but we have a live-in aide (required by drs. for him to live at home). Do you think he will be violent/aggressive towards you if he's at home? Can you get a part-time aide (less expensive than ALF) to assist with bathing and help with cueing him to do other things? I understand your financial concerns, we are in the same boat. The live-in aide costs the same as an ALF and DH is otherwise healthy, so I expect I'll be eating cat food in my old age (if I'm lucky!)
Ask his doctors if he's safe to bring home. They may increase the seroquel to help with the aggression at home. If you do bring him home, you can set up the spare bedroom as you mentioned and I would have a new lock put on the door which locks from the outside so you can lock him in if you feel he may hurt you or someone else. I would also advise you to have a lock on your bedroom which locks from the inside for your safety and devise a plan where you can be safe if he becomes uncontrollable. I have a lock on our walk-in closet so if I need to hide immediately I have an alternative. It may be less expensive but you will have to plan for all situations so you are prepared for any situation when/if he comes home. My heart goes out to you.
Kadee, if you are going to bring him home, I would strongly suggest keeping him on regularly scheduled doses of both Seroquel and Ativan. This is what I did and it worked. Jim (FTD/MNV) was also on Paxil which is an anti-depressant. Showers are very overrated with dementia patients. Our home health aides gave Jim a thorough sponge bath each day and a shower once a week, for a while he was not able to do the shower at all. With a big basin and a nice smelling body wash, all was good. Also powder is really important in the creases.
I also put together a bedroom for the two of us. We had a twin for me and a hospital bed for him. I added our recliner, tv and a rocking chair for me. I was not working (ya right) so I spent most of the day sitting with him.
Participation in activities cannot be forced. All Jim was interested only in watching tv. Other activities were too stimulating.
Has he been violent at the ALF? Are you in a financial position where you might qualify for medicare or medicaid? Can you get some in home care, such as an aide to wash and dress him daily? How old are your children? Are they fearful for your safety. If so, another reason to keep him on scheduled Seroquel and Ativan. With the correct dosage, you can have a calm spouse and not one who is violent or overly medicated.
Keep posting, keep asking questions, talk to the administration at the facility and see if you are missing any assistance.
You asked so I hope you will accept my very honest answer. And that is NO!!!
You posted 3 days ago in the April Check In that your husband was violent with the other residents. You referred to him only hitting the staff when they try to change him.
Your safety is paramount here. I do not remember your exact story of placement but I would guess you placed him because you were unable to safely and/or physically manage him and I doubt that has really changed.
I wish I had something to offer you on how to make the financial picture work but I have no experience in that. Hopefully those with that type of experience will be able to chime in here with some advice.
It sounds as if your husband is a handful for the paid staff that come in three shifts. How would you, one person be able to manage that 24/7?
Kadee--Have you seen an elderlaw attorney re Medicaid? The spousal impoverishment provision was set up so people in your situation would not end up penniless.
Medicaid is not age related. My brother is 43 and receives SSDi, medicare and medicaid. While he was waiting for the 24 month period to pass, he had just medicaid. Having just medicaid make it harder to see some of his original doctors because they didn't accept medicaid. Now he has both due to his low income.
Kadee the seroquel dose can be increased even higher if needed. I really fear for your safety. You will need to have a locked safe room in your house and carry your charged cell phone at all times. Make sure you notify 911 folks of your situation.
To answer some questions posted: I have seen an attorney...we are one of the lucky or unlucky ones...which ever you look at it, who have too much money for Medicaid...but not enough for an extended stay. I so wish, we had invested in Long Term Insurance. The boys are adults with families of their own. They just worry about my safety. Both times he was violate, 1st time he had an UTI, 2nd time he had C Diff both times ended up in the hospital. The 2nd time was when I placed him in ALF, I didn't think I could take proper care of him after his release. He is on Seroquel as I mentioned, however, only 50mg a day, plus Lexapro & the Avitan as needed. As I find more out about his aggression towards the 3 residents,seems it was kind of blown out of proportion. Since he cannot communicate, he likes to pat or rub their heads, I guess he patted a little harder than normal. The lady he was suppose to of twisted her arm, thought another woman had did it. I will try to get someone to help me with the showers or forget them all together. When he was home he would allow sponge baths. As, I mentioned I will continue to take him to Daycare. By bringing him home at night will help with the finances by about $1200 a month.
Kadee, Please think this through very carefully. Do not try to take on more than you can handle. You and your children should sit down and decide this together. We don't want anything to happen to you. Use your head and not your heart. Make a list of the pros and cons and please give yourself time to make this decision. We love you and will keep you in our prayers.
i think a conversation with his dr is paramount prior to bringing him back home. unless he has his meds on track that keep him regulated and non aggressive you should not attempt to bring him home til thats done.. there is a right combo but it may be tweaking. we all have seen that FTD is the most vicious form of dementia. in younger spouses they have super strength as well. having to live in 'fear of' is no way to live money or no money. remember daycare wont take him if hes even a bit violent or does anything relatively aggessive either. safety is primary there as well. speak to his dr and see what he thinks and go from there. explain your situation but that you must have his meds ironed out to where hes manageable and displays no aggressive behaviours. if 3days ago he had any confrontations thats not accomplished yet. get things ironed out then you may be able to make the move. hope it works out - divvi
The ALF really doesn't want to use the Seroquel at all, but I insisted. As I said, he is only on 50 mg a day. That is not even close to 225 or 300 mg. I will contact his Neurologist for his input. Still in the end, if I cannot afford to have him stay there without going bankrupt, I think I have no choice.
Kadee--You sound like you may not be "hearing" us--we are all concerned for your safety. The program that would pay for residential care for your husband is called Medicaid, not Medicare. Jane needs to weigh in on this, but under Medicaid, you are allowed to keep your home, car, prepay burial expenses for both you and your husband, make improvements on your home, and can keep one half of your combined assets--the max is slightly over $100,000 at the current time. I don't know your circumstances, but the law was set up that way so the spouse doesn't have to go bankrupt. Were you given advice that differed from this?
Also, Medicaid doesn't cover assisted living--so you would probably have to move him a nursing home setting when you could qualify financially (once you have "spent down" to the allowed limit).
Divvi is right, the daycares will not put up with aggressive behavior. My husband was "dismissed" from a daycare because he picked up a chair with another client sitting in it. Please pull up the daycare threads--I posted the details. My husband is also young--started daycare at 61--and they are not all set up to handle younger clients. I had to do trial and error and finally found a good one for him--but it is the third center he has attended and there were serious problems at the first two. He is on 50mg a.m. and 100 p.m. of Seroquel and this has helped. (He is AD, not FTD, and luckily the aggression was only at daycare and now has stopped.) The right meds and strengths can make all the difference. Just this week we visited his neuro and he commented that he thinks now we have the right "cocktail".
I really do hear what everyone is telling me. I appreciate all your thoughts & concerns. He is on Medicare, I meant to say Medicaid. Susan, if you don't mind me asking...why did you bring your husband back into the home? I know he had FTD, was he violent in the past? Believe me, I have & still are giving this considerable thought. I have prayed for God to give me direction...it seems like this is the direction he wants me to take. Why does this disease have to be so hard.
Kadee - I have been through the same thought processes this past week. DW has been in an ALZ home now for 5 weeks. We got her on some new drugs to try and get her under control and they seemed to be helping plus all of the sudden, out of nowhere, her "friends" and a sister started showing up to visit which really cheered her up. She seemed to stabilize, she wasn't falling anymore & started eating again. Nurses were relieved to see her stop hitting and name calling, not being so sour and combative. So, I start thinking, since I still haven't been able to find a job, maybe I ought to bring her home again to save the costs. Then I reminded myself this thing goes in cycles and she will likely get right back to where she was so just stay the course, leave her there and focus on finding employment. Well, the sister and "friends" stopped after 2 weeks and this week, except for Friday, DW was right back to where she was. Extremely mean and uncooperative and won't eat. She's lost 25 lbs since October, down to 101 lbs now. I was confident I made the right decision to leave her there. Then, yesterday I got the first bill. It just kinda jumped out at me (though it shouldn't be a surprise). So, I started thinking yet AGAIN about bringing her home to save $$. The ongoing roller coaster of Life with Alzheimers. I think will leave her in the home. Thanks for listening.......Thenneck
Thenneck, I truly understand where you are at. I also received my 2nd bill from the ALF $3,792.59...that will be $45,511.08 a year. Out of my husbands pension & SSD I would have $7000 a year to live on. I do have a savings, however, it will last only a couple years at that. I think my decision is being made for me. As I said, in my previous post, I have thought & prayed about this decision. I would never have placed him in the first place, had he not been in the hospital with C Diff. It maybe the wrong decision, however, I really don't see any other choice. Again, I thank everyone for their comments & concern...you guys are the best friends I have ever had.
Kadee, Jim was never physically violent. Before Seroquel he would pace and pace, just waiting for one of the kids to to something that he could yell about, but NEVER was he physically violent. Seroquel saved us all. I brought him home at his request because he knew his time was very limited. Having the Motor Neuron Variant of FTD, the physical symptoms progressed much more rapidly than the dementia. He always had a feeling of dread weeks before a decline. We talked at length about his move home, I had always wanted him home, but he did not want to be a burden on me. I had 6 wonderful weeks of him at home, it was hard physically and mentally, but he was always a pleasure.
I agree with you that you MUST talk to his Neurologist before making a decision. He should be up to a theraputic level of Seroquel and Ativan before you even consider taking him home. It is my opinion that you should move him from the Assisted Living to a Nursing Home. As Marilyn said, NH care will be paid for by Medicare and Medicaid. I never had to pay a cent, except for his TV and cell phone, clothing and such. If he is violent, you cannot have him home alone with you and Day Cares will not accept or keep him.
The financial piece of this stinks, many have filed for bankruptcy, I may end up being among them. The most important piece here IS YOUR SAFETY.
I thought I would post a update. I spoke to the ALF Director to put in my 30 day notice to bring my husband home. I explained that it had nothing to do with his care, strictly finances. As everyone else she had concerns for my safety. She suggested, I crunch the numbers again on my monthly bills & give her a number that I would be able to handle. She then presented that number to the corporate office & they accepted the amount I could pay a month. This is great news, however, it might sound stupid, but, I am a little disappointed, that he will not be coming home. Since I prayed for guidance, I know this is what God thinks is best for me. Again, thank you to everyone for your concern.
Kadee, what good news! That your prayer was answered, that he will be taken care of, and that you will be safe. You will still be his caregiver even though he isn't at home. We are all breathing easier for you!!!
I am so glad that your husband will be able to stay in the nursing home. Much safer for you.
But you brought up a point that I don't think many of us are aware of. Negotiating with the nursing home. I have only heard of instances where someone who cannot pay the full amount is shown the door. It is good to know that we may have negotiating options. Thank you for letting us know about that.
Kadee I am so relieved for you. As Mary said-you are still wife, caregiver and advocate. You can take your husband out for outings if he is up to it. You won't be under so much pressure. Now you can actually enjoy your time with him.
Great news; and I expect, all 'round, it's for the better. It's also good to know there are corporations that will work with you. Hope there are a couple when my "turn" comes.
Kadee: Thanks for writing on this subject and to the rest of you for your input. I haven't been active lately because of moving, but, I still appreciate all of you and will be back (wordy as usual) soon.
Anyhow, I have been having the same thoughts as Kadee and Thenneck. My DW has been in ALF for almost three months now and I would like nothing more than to bring her home. But, I have taken her out recently to Church and our Son's home and she did not handle it well at all. After about two hours, she became restless, confused and was getting mean again. The ALF seems to have become her comfort zone. Also, the dr discontinued her Seroquel and replaced it with something else. Seems to be working OK.
Sure can relate to the financial discussions. I am headed down the same road to poverty unless something changes.