I have read most of the other threads on this topic but I'm not sure they completely address my dilemma. My DH was diagnosed 3 years ago with early onset alz at the age of 58. He is now 61 and I am 53. He has been on full dose Aricept and Namenda for about 2 1/2 years. He is also on Citalopram and Seroquel most recently (Sept) for increased anger and agitation. He is also an insulin dependent Type I Diabetic (since 28 yrs. Old) and is no longer able to adjust his insulin dosages based on his blood sugar readings. I work full time and have a caregiver come to my home while I work. There is a period of about 3 hours that he is here by himself (or my son might be here) in the afternoon. I work about 45 minutes from my home. Caregiver oversees mediation administration and supervises to make sure he is ok. I have 2 older children who are out of the house, one in college and my son at home (junior in high school). Yesterday, while I left to go to an appointment and run errands, my husband apparently drove the car. My son was gone and had left his keys out in the open. I did his morning insulin and left him to make his own breakfast which he can still do. When my son returned later that evening he confirmed my fears that DH had, in fact, driven the car. He has no license as of December when we turned it in due to recommendation by the dr that he not drive. DH has severe problems communicating as he also suffers from primary progressive aphasia. The anger and agitation is also ramping up. DH is angry with me about almost everything. While he hasn't done anything yet, he scares me when he gets like that and gives me looks that make me nervous. I know this could get out of hand. Never wants help since, in his mind, he can do everything himself. He continually resists any help from me although it must be. He has increased inappropriate behaviors such as urinating in the yard if the mood strikes and picking up the dog feces with his bare hands after the dog goes to the bathroom followed by NOT washing his hands. My son is completely over it and has said we need to place him. Son also said to me that I need to because I am stressed all the time and he can see it in my face. I spoke to one of my older girls and she said she will go with me to look at places. I feel like it might be too soon since there are still things he can do but then I have to think about my son. I myself am on medication to help me cope and am recuperating from a fall I took while I was out running (my stress relief). My shoulder is not broken but I tore a ligament and it has restricted my movement. It just happened last Sunday. Anyway, sorry for the long post but I don't know what to do and am looking for some advice.
It is pretty clear that you are dealing with a constellation of health and safety issues. Past a certain point, the question has to be not "Is he happy?", but "Is he safe?" And it looks like you have some valid health and safety issues for the rest of your family, too...related to your husband's status at this point. Based on the information you've shared, I think starting to explore placement is a wise decision. Others will surely chime in here also.
You didn't address this, but I also recommend that you talk with a good estate planning attorney/eldercare attorney/disabled issues attorney...someone who can help you set up your paperwork and estate planning so that your DH is cared for without impoverishing you and your children any more than is necessary. This is a hugely important subject, and there are other threads about it on this website.
Elizabeth, thank you for your perspective. I do need to follow up with an eldercare attorney. I am somewhat fortunate that my DH has 2 forms of Long Term Care insurance. One is an actual LTC policy and the other is life insurance with a LTC rider attached. That will pay the face value twice and replenish the death benefit. The LTC policy has an inflation rider so the lifetime max on that policy is increased. He also has pension money which I rolled into an IRRA which I am having managed by our financial planner. I pushed for him to get these 2 policies while he was working, more because I thought he might need it for the diabetes. I never in a million years thought we would need it for alz. From a financial perspective, I do need to make sure I am covered and not impoverished. The only saving grace to not totally sending me over the edge was the fact that he had the LTC insurance. I pay those premiums religiously.
I just spoke with my eldest stepdaughter and she is fully supportive of me doing what ever needs to be done. She knows she is not here (lives out of town) and cannot imagine what we go through on a daily basis. She was taken aback when I shared with her the comments her brother made. (the two oldest are my stepdaughters but all 4 have the same father). My son has always been the one in his Father's corner and taking his side, so for him to say it's time was revealing. I will start looking and continue to think about it. I will be getting in touch with his doctor tomorrow as well. I so appreciate your advice and support.
I agree with Elizabeth, and the sooner, the better. He is not going to get better. This is one battle you can't win, and you need all the help and support you can get.
Sass- usually if you're thinking of placement you should if done it six months earlier. I know others here after they have placed realized just how beyond bone tired we were.
Mine was aggressive too and I let it go on too long. It took his doctor and community care nurse to make me realize and move him. 2 years later I know I did the right thing, I has heading for some serious health problems. Now I sleep well at night knowing that there are good staff that changes ever 8 hours and more than one to look after him not just one very tired person doing it all.
You have done a good job and You don't have to do it all by yourself. Be kind to yourself.
Hi Sass, Here is the best advice I ever got about how to handle Alzheimer's: "If you do not take control of this situation, it will take control of you."
The health and safety issues make it clear that something has to change, whether it is admitting your husband to LTC, putting him in daycare and increasing the aide's hours, or quitting your day job. If you are unsure, I suggest that you look into hiring a geriatric care manager to advise you on possible options for his care - whether at home or in a LTC facility. One factor that might favor a LTC facility over home care is that this does not seem to be a good situation for a high school student. If it were another kind of disease, I might say differently but the craziness of Alzheimer's seems antithetical to the things a high school junior needs to be focusing on at this stage of his education and development. One member of this site (paulc), who placed his wife when his son was at this age said something I always remember, "Children come first." Another factor that might favor placement is that at age 53, you are (hopefully) entering your highest earning years. If you keep your husband at home, it will probably derail your career.
Good luck. People always say this is a tough decision, but in my experience, when you step back and look at it objectively, it's an easy one. What's tough is the effect it has on us.
It is time for placement, no if, thens or buts. You have a son living at him, he should not be his father's caregiver. He should feel comfortable having friends visit your home, or feel free to go out and not stay home looking after his father.
The longer you wait the more difficult it will be for your husband to adopt to the change. Staff should get to know him while he is relatively well, this can result in better care as he gets worse because staff can have a chance to see him more as a person.
The car incident means you cannot leave your husband unsupervised. Ever. You don't know what he will do. I am sure he doesn't understand that he shouldn't be driving.
Consider hiring a placement company. We didn't do that for the first ALF and I regret that. It is good to have an independent evaluation of your husband and have the staff look for a place that complements his needs. And you should have advice on places to avoid (the 2nd tier ALFs that might have an OK looking appearance). My advice is colored by my own experiences.
I am overwhelmed by all the support and helpful suggestions. Paulc made me cry because I know all of that is true and I have relied too much on my son and I needed to hear that. While he goes out and is able to have a social life, I do believe he doesn't invite friends over due to his father. The only ones he feels comfortable with are the ones he went to school with since Kindergarten. His high school friends he does not invite over. He always goes to their homes. Lately I know that I cannot burden him so I have taken much of that on myself but it still affects him. I was a mess last Sunday when I had my accident because it was my son who took me to the emergency room. I was crying and in agony and he was the one I turned to. Its not fair to him and I have told everyone around me that I will not burden him with all of this because he had the misfortune of being born last and the only one at home. I will definitely make this an urgent priority. Thanks to everyone for your support. It just seemed so soon and I was struggling. I realize it's time and I just needed the advice of others who truly know what I'm going through and can relate and provide relevant advice because they have walked in my shoes and so much more. I feel like a burden has been lifted in that I am not making a wrong decision and that it is the right thing to do. I am so grateful for everyone's comments and I truly appreciate it. I am forever thankful that I found this site. I really don't know what I would have done without it.
I am glad responded because more than most of us, he has the experience of still have a child at home and the effect this has on them. Blue I think is the other one.
I had a daughter in high school. She wanted to keep her dad home. But we were one of the lucky ones. DH was easy to care for. And did not really do anything he should not have. But about every 6 months DD and I would talk, to make sure we were on the same page. But as they say, If you have seen one Alzheimers patient you have seen one Alzheimers patient.
Sass, with what you are talking about, you need to place. You have to many issues you are dealing with to do this all yourself. The driving alone would have put me over the edge. Yes, start looking now. I wish you the best. You are doing the best you can for all of your family. (((Hugs)))
Sass, with so much on your plate, a young son still at home and your own health and career, it sounds like the time for placement has arrived. This is such an individual decision and never an easy one. The best piece of advice I received before placing my DH was from an acquaintance whose husband was already in care and she said "it's not a question of whether you can look after him but rather do you want to' ....... at first this seemed selfish to me, but after placement I realized it was self-preservation. Wishing you the best as you move forward.
I just had the conversation with my daughter (20 yr old) and 4th of 4 children to confirm they agree it's time. She was very emotional and I think it was good for her to talk about it. She is too much like me and keeps things bottled up inside. As much as it was emotional, I think it was a bit cathartic for her also. My children have not wanted to talk about it (with me or each other or their friends) but I think maybe now they will. This has been an exceptionally hard year and my plate hath runneth over as they say. nbgirl, you are certainly right about that!
Blue, our situation was like that in the beginning and he was ok to be at home and, of course, I wanted him here. At the time, his demeanor was more jovial and happy. It has declined since then. And now, the situation has taken a more negative turn. What is telling to me is that my son over the summer said he didn't think his dad was that bad off that he needed to be placed. Three months later my son thinks differently.
My daughter (20 yr.old) talked to her brother and he told her he doesn't want his friends to come over because he doesn't want his high school friends to know. He's embarrassed by it. My son said he is protective of me against his father. I know I have to do something. I'm glad I know. Thanks so much for all the support!!!
Sass, I know our DD was very careful who came to the house. Only friends who she had known forever. They were all great and very kind. My DH passed fast, in less than 4 years. I hope you don't think I was saying you need to keep your husband home. I fully support what you are doing. I only brought up what we did because Charlotte brought my name up. I did not want you to go back and read my post and think you should keep your husband home. Hope I am making some sense here. All this to say, you are doing the right thing. I am so sorry you have to even think about something like this.
Oh Blue, no worries here, none at all. I find it extremely helpful to read of others experiences. I appreciate each one and it helps me learn. If this site has taught me anything it has taught me that everyone' situation is different and that all the wonderful advice and insights on this site serve to help those of us going through these experiences. It has also taught me that this group of people, who I have never met, are the most compassionate, empathetic, open minded, non-judgmental group of people I have ever encountered due to our shared circumstance with alz. I am glad that you were able to keep your DH home. My circumstance has required me to contemplate other options. I will continue to rely on my new friends for advice and counsel, support and encouragement and just being there for me when I need it. I will do my best to do the same. Hugs to all !!!
Sass, I concur with all the above. I placed my husband before I thought it was time but it was time because he could no longer drive and was urinating all over the house. I have a small condo and work from home so I chose not to have a caregiver coming in. I was told that if a person is diagnosed with Alzheimer's and gets into an car accident you can be sued. One thing I would suggest that I learned that some nursing homes will not accept patients with inappropriate behaviors and I was told that urinating inappropriately is considered inappropriate. You will need to screen the facilities to make sure they accept patients with behavioral issues. No amount of medication made any difference in my husbands inappropriate urinating. They tried frequent toileting but it it made no difference because he was still walking which made it problematic because nursing homes will not restrain patients if they can ambulate.
Through high school my son told only one friend about his mother's condition. This was after she was placed and she happened to make a very annoying phone call to me an I exploded. My son had to tell his friend why I lost my cool.
Sass although our situations are very different I am currently right where you are realizing that placement is necessary. One comment that really resonated with me was that it is more about when the caregiver is ready, where they have reached the point where they cannot cope, than it is about where your spouse is at in this disease. Once you have reached that point you do not want to be in panic mode but already have a plan In place. I was at that point a couple of months ago but things have settled now, I have been coming onto the site but not posted for awhile. I know however that I must still move forward with looking for placement I cannot wait until I hit the wall again. For those of you who may remember my last posts I was debating taking our rv and visiting people we hadn't seen in a long time i was worried about the trip. We were gone a week and it went very well we driveway surfed which always gave us our own space to come back to. We are also going to Mexico for two weeks at the end of the month it will be a challenge but think it will be good. In the back of my mind I want to do these things as it feels like we will be doing them for the last time. I have also got our first respite stay lined up for mid January. I will use the time to research more facilities. I am already starting to think about how to get her to the respite hotel, that is what it is called. It is for 5 days so will have to pack things etc, how do I tell her, there is no reasoning, how have others done this.
Maybe, since it is called a hotel, you could tell her the motor home needs a few tweaks and so she will be staying in a nice hotel while it getting fixed. You of course need to stay on site to oversee the works. Is that a possible sotution or will she decide she needs to stay and help?
Thanks jazzy I will just have to do it I know that. I hate to lie to her but I know sometimes it is necessary. I think I just need to express my anxiety, guilt, about having to do this. This is something I have to get over and just being able to express this here helps. Many of you have expressed the same feelings when you have had to make these decisions and I just have to be as strong as you were. Deep down I feel this will be much harder on me than it is on her, this is the first step, maybe the second step after getting help in.
My dear friends, it feels like it was so long ago that I wrote my original discussion post but I was reminded as I read it that it was only 5 days ago. So much has happened. I had a scare on Monday when my DH called me and was furious with my son about not taking him to play basketball even thought that hasn't happened in over 5 months. I called the dr and spoke to him and upon his advice called 911. That was a disaster as they couldn't do anything even though I insisted I feared for me and my son's safety. They could do nothing based on their "criteria". The cop came in with me but was totally clueless about all the signs I could see. I ended up having my brother in law come over and stay with me. My son left and went to his sister's. After that, it cemented my decision to place. I took the next day off of work and proceeded to make a bunch of calls. One call to a friend of ours who owns the facility my mother in law was at. She is not licensed to take someone with my husband's issues (insulin dependent diabetic), but she recommended a place to me and also a placement agency contact. The place she recommended was somewhat surprising. It is actually an assisted living facility (ECC licensure) that is right next door to our neighborhood. Their property backs up to backyards in our subdivision. My stepdaughter and I visited it and one other facility. I also visited a third that I ruled out as not a good fit. I will look at a couple others as well. I know enough to not choose a place on convenience. HOWEVER, both my stepdaughter and I really liked the place next door for my husband for so many different reasons. I will likely put him here, unless the other ones are a much better fit. My plan is to do it after Thanksgiving. We can all be together. My oldest will be up here with her twin boys and DH will get to see them. All the children will be able to be there and support me and each other. I have his best friend lined up to help me too. I've got the paper work moving for his LTC insurance. While I still get scared
While I still get scare while I wait for placement, I feel a huge weight has been lifted. I have gone through a myriad of emotions and know that will continue, but I have resolved within myself (as have my children) that it is time. I don't know logistically how we will do it but the facility will help me figure that out. I'll keep you posted. Thanks for all the support and suggestions. I have definitely listened and used them.
Sorry the incident happened and even more sorry the police were no help. How ignorant can they be? Hope whichever facility you choose will be the right one for your husband and you.