Hi to all my friends. Need your comments and advice. DH has gone downhill past few weeks/few days. As most if you know I have two boys 12 and 11. We are all frustrated and the frustration is growing by the hour. DH still mobile, can feed himself and showers once or twice a week. He is very confused, delusional at times, urinary incontinent frequently, agitated and should not be left alone. He does know who we are. He is staring day care however I feel in my heart that a nursing home is inevitable sooner rather than later. Starting Medicaid app process and shouldn't be an issue. I have emotionally separated myself from DH in order to survive this hell. I am very unhappy and a prisoner in my own home. I pray every day that God takes him. So ironic. My biggest fear was that something would happen to him and I could never even imagine life without my best friend and true love. I just need some assurance that I am heading in the right direction and that placing him when he is still mobile is ok.
Christine 0815, You have to do whatever is in the best interest of your family. I only had myself and him to consider. He was placed 3 months ago. He was still mobile, although balance was not great. He was still fully continent. Our problem was that he began requiring 24 hr observation as he was up and down all night and I was still working (keeping 2 energetic little boys full time) to support our income in order to be home with him. You also have 2 young boys to consider. Your focus has to be on what is best for them. Your husband will continue to deteriorate. You have to do your best to keep this disease from affecting you and your boys in a negative way. Their lives need to be as normal as possible. I don't know your situation, but my vote is to proceed with placement. Have a more stable home environment for the boys. Your job will not be done, but you need the 24/7 help with his care. You will still have to fight like the dickens as his advocate. But, your boys need stability at home. Bless you!!!
"(He is) still mobile, can feed himself and showers once or twice a week. He is very confused, delusional at times, urinary incontinent frequently, agitated and should not be left alone. He does know who we are."
You have to do what you've said. Try and emotionally separate yourself somewhat. It's very hard but I do that too.
You also have the boys where I would take responsibility myself but try and share the plan. Which is that life is harder for all of us; but, we can band together and help each other and help dad. He will get care in the NH you would have to dedicate all your cycles to provide.
Instead it's the dual life where he will steadily get more like what you describe but resources are provided for him and you are watching out for him. But the NH, if you can swing that, will give you more cycles to focus on parenting, standing in as dad in some ways, and provide something the three of you (mostly you) are trying to build - and Christine that IS the future so go towards it.
I'm sorry for the road ahead and I support what you are thinking.
I placed my husband five months ago. He was having similar behaviors as you describe. It was a heartbreaking decision for me. One that still brings guilt ( although it is unearned). But , I now know in my head It was the right decision. But it still hurts.
In your situation, you have two young boys to think about. You cannot change the outcome of your husband's disease. But, you can Give your sons the stability and calm home life they need as children.
I , humbly, suggest placement for your husband where he will be well cared for. You and your children do have a life to live.
Thank you everyone for your prompt and heartfelt responses. I do feel very comfortable and confident with the path I have decided to pursue. You are all absolutely correct in that he will only deteriorate. If we qualify for Medicaid I will pursue a NH sooner rather than later. It is heartbreaking but I cannot allow myself to wallow in that heartbreak. I have to carry on. Right?! I never thought I would have to deal with this issue so soon. DH's mmse, which I know is controversial, from October of 2014 to two weeks ago (just three months) dropped 10 points to a 12. I am such a self doubter so thank you all for your comments and support. I sincerely appreciate it.
I agree with the others. In my mind the issue is whether you can provide a good quality of care for your husband at home while providing a good quality of life for yourself and your children. You already answered that question.
Some people feel that before we place our spouses they must be incontinent, or non-ambulatory or unable to feed themselves. I placed my husband in May and he still has none of those problems, and is he ever mobile! I call him the energizer bunny. I just couldn’t take care of him any more – the details aren’t important – and like you, I was a prisoner in my own home and felt I was living in hell.
Your boys need you whole. It’s popular to say that children need two parents but many kids do not have that luxury. My fear is that if your situation gets any worse, your children will not even have one functioning parent. Even after your husband is placed, your boys are still going to need the emotional strength to deal with having a father with dementia. A stable and welcoming home environment will go a long way for them. (And I have not even started on the part about how you need a life, too.)
Children come first. You are sounding at the end of your rope. I placed my wife due to behavioral issues with a then 16 year old son at home. Not healthy to be constantly walking on eggshells. We had paid help at home that that provided stimulation and safety during the day, it was just family at night and on weekends.
My son became more outgoing once L was placed, and it took time to see the improvements in him. We feel (I am including her family) that we moved her in time, that if we waited longer it would have taken longer for her to adjust to the move. While she still has her ADLs there are times she needs help dressing (especially if she falls asleep before getting into her PJs) and this weekend I saw evidence that she might be needing help with dressing in the near future.
I am glad Paulc posted because he has been where you are. You can not save your husband, but you can prevent this disease from taking you and your children. I know it is a heart wrenching decision. Did you and your husband ever talk about this early on?
Christine, What paulc mentions about the timing of his wife's placement is in accord with the beliefs of many people who have experience dealing with placement issues. A benefit of placing a person earlier rather than later is that they still have enough marbles to transfer their ability to perform ADLs (activities of daily living) to the new environment. I was kind of slow to place my husband but fortunately he still had enough going for him so that he could adjust well to the move. I also agree with Charlotte about the value of paulc's perspective about the impact a parent's dementia has on children.
Christine, whatever decision you make will be the right one because you are doing what you think is best. Period. Don't let others sway you from doing what you think you need to do. A word of caution, though ... many nursing homes will not accept people with dementia while they are still mobile unless they have separate lockdown units. So you may need to check several places because many nursing homes I have checked do not have separate lockdown units.
Christine, Your plan sounds like the best you can do in a bad situation. My youngest daughter was older than your boys. I kept my DH home till the end. But had my daughter been the age of your boys. I would have placed him. Your boys need you.
Christine, I concur with all of the above. My husband was placed 16 months ago in assisted living. He has almost all the symptoms you describe except he cannot shower by himself, is peeing everywhere except the toilet and has trouble using food utensils. He knows me but cannot make a coherent sentence anymore.I was told last week that I have to move him to a long term care. I knew it was coming but it always comes sooner than we want. Yes place him. Although there are other challenges with placement I have never regretted my decision and I do not have young children. You and your kids deserve a life.
Myrtle makes a very good point. I wasn't thinking of it but moving later can see loss of ADLs. A friend of mine whose husband has semantic dementia moved him because she could not longer keep him or her family safe (no anger or outburst but he didn't know what was safe, there were a few incidents which were bad but could have been much worse). He had all of his ADLs before moving to the ALF but lost them soon after. She figures that he was on the verge of losing them but the familiarity of the home allowed him to keep them. The change in environment was too much, but she is sure if he stayed home longer he would have started losing them soon anyway. If she moved him sooner he might have kept the ADLs longer.
Keep in mind that in the short term after a move for some losses. But they can gain back these losses once they settle in. In some cases they do better than at home if it is a good LTC facility that provides more routine than a home environment can provide.
Christine, you are in such a difficult situation. I read this quote somewhere, and it would seem to apply right now. "It is easier to build a child than repair an adult." It could cause them a lot of problems at their young age, and I think that probably when you husband was well he would never have wanted them to experience this. Best wishes,
Thank you, as always for your thoughts and suggestions. My boys are really doing well and are patient and very kind, but I can tell their frustration is growing. They are ok I think because I have been ok. However, over the last few weeks I have not been ok. I have to have a plan in place and am trying to do the right thing for my boys and for me. It is a terrifying time but we will be okay. I am so grateful to all of you and I really going to need you in the next few weeks. I am here for all of you if you need me. xo
Christine, I hope you did not misunderstand my comment ... So glad to hear that the boys are ok - it speaks volumes about the kind of parent you are. Just meant that the boys are young, and no one would want them to be too stressed. I can't tell you how much I admire you, and at the same time feel such compassion for the situation you are in. I know I could never be so strong. God bless...
It's a remarkable disease that can take us from a place where we cannot imagine losing our best friend/spouse, to feeling that a quicker death would be a difficult blessing. It all makes sense to me. You seem to have a good sense of yourself, and I wish you the easiest transition possible.
Marg78, I did not misunderstand or take offense to your comment at all. You make a good point....they are good now but with all the decline it won't last long and I need to put them first. Thanks everyone.
I guess I was fortunate that it didn't come to placement for me but I was on the threshold of making this decision when my husband suddenly died of cardiac arrest. That said, I had to look well ahead of time for nursing homes and costs etc early because of the waiting lists which could be quite long. I presume you have already done that or are in process now of these investigations.
I can imagine how difficult this is for you especially with children as young as yours are. You need to be confident that you are doing the best for your DH and for your family. Even without youngsters involved, this is a most stressful situation in which the main caregiver is ground down and badly over time. All of this hurts us down to the very core of our being and we all carry the questions of what if...we just do the best we can.
One person who has defined this circumstance so well is Wolf. He has poured out his heart and soul about placement and feelings of loss, confusion and so much more. Reading his and the thoughts of others as well, will show you that you are really not alone in this and how you feel and the questions you have.
I salute you on the job you are doing for your family and your husband. Hugs to you..