Hi, thank you all for reading. I know this is kind of long so I appreciate it so much! I am new here, but hopefully will be able to be an active member as I feel I will have advise for others !
I am currently caring for my parents (88 & 82) in an independent duplex very near my home. I quit my job (I've been a RN for 22 yrs.), to be able to do this. I had the blessings of my 4 brothers at that time (6 months ago). Our parents lived about and hour away from me before we moved them close, and at that time it was apparent they needed more outside help due to forgetfulness and mom's incontinence and physical ability. I just started receiving VA benefits and my parents have a small amount of savings to supplement.
At this point I spend 4-5 hours/day at their home cooking/cleaning/bills/meds/playing games/visiting/working with my mom's ambulation etc. Also do all the shopping/errands since they don't drive. They are otherwise able to do fairly well without me there and my mom gets herself around with dad's help and a wheelchair. I can honestly say I'm doing an excellent job and they are much better off then they were.
I'd first like to say that in the 6 months that my parents have lived there, my brothers COMBINED have visited them less than 8 times. All are close less than 1 hour away except the one that is opposed to a nursing home and he is out of state.
3 of my 4 brothers (2 in particular) are pushing me to put them in a nursing home. Reasons being: My dad is too active/social and is not receiving enough stimulation in that area (I agree he has always been "hyperactive" and social to an extreme almost). I have taken him to the sr. center in town in which most of the people that talk to him start ignoring him because he can be overwhelming...(i.e. bragging/flirting with women/combined with the forgetfulness). He stopped wanting to go except for the occasional bingo game. Other than that they just feel like he's bored and that keeping him cooped up in a duplex is "cruel".
Mom on the other hand is forgetful/mild dementia, but is much more calm and happy staying home. Her physical limitations are improving with my help (she needs a lot of urging and coercing to get her to do anything physical and she refuses to do anything for anyone else but me, including physical therapists). Their concern with her are that she isn't physically stimulated enough, needs rehab (they aren't around, so they don't see the progress she's making and she won't do anything with anyone but me anyway). I work with her with exercises a physical therapist provided and just making her walk with her walker. Brothers also complain that she sleeps a lot (12-14 hrs. a day). I spoke with her dr. about this, she's on antidepressant btw and dr. thinks it's due to early dementia, to let her sleep, but not more than 14-16 hrs. a day. She keeps under that.
I am willing to move them into my/my husband's home and be with them full time, but they continue to persist that they would be better off in a nursing home (which would need to be medicare/medicaid facility). None of them work in the medical field and I feel like they some sort of fairy tale idea about them getting all this attention and care. I explain until I'm blue in the face that I've been in this field for 20+ years and that's just not reality. I know there are many good n.h.'s, but my parents WANT to be with me and get much much more attention and love than the best nursing home could provide. Especially if they live in our home. My brothers trust that I am a great person/nurse and so I am left in disbelief as to how anyone could be so backwards.
If it has to come down to a vote it would be 3-2 in favor of a nursing home. Is there any recourse??? (I am both of their dpoa for healthcare)
Thank you all so much!!! Amy
I do wonder if you realize how the dementia can really progress. I know you're a nurse, but have you worked with dementia patients who have really progressed? It's not long before they can't be left alone at all. I fear your dad would not be able to handle it alone. With dementia they may fall and can't get up. They may forget they can't walk and fall out of their wheelchair. They may eat shampoo or turn the stove on and forget. It's like tending to a toddler who will get into all kinds of things. Eventually, your conversations will stop as they lose the ability to speak. Then you have the progression where they may choke or can't move at all and you have to get them in and out of bed, change their position, etc. You are the professional, but that's a lot to do 24/7 by yourself. Could you get some help to come in if they lived with you?
I would visit a Memory Care facility and see what kind of care is required at the various stages. My cousin became wheelchair bound fairly quickly with Vascular Dementia mixed with Alzheimers. Her doctors are not very hopeful she will rehabilitate her legs. Things start going away, such as walking, talking, feeding, etc. To my knowledge, it doesn't get any better, even with rehab.
I think it's great what you're doing for your parents. If you think it's best and they want it, I would be hesitant to disagree. You are right that long term care facilities have their issues. Some are better than others, but they all have issues and your parents may not find a perfect fit.
Your dad's behavior could be due to some dementia. That will continue. He may be very content though at an Assisted Living facility. They have socials and activities there. People with dementia are very common so, odd behavior is quite the norm.
It's a tough call. I know that caring for two people by yourself in the home as it progresses will be very challenging. I applaud you. I know I would not even consider it. It sounds like you really want what's best for them. You'll make the best decision.
As for your Dad, if you moved your folks to your home, would your Dad feel like he could do whatever he wants because he is in his daughter's house, fully disregarding your husband? Would your Dad's hyperactive personality put a strain on your marriage?
There is a lot to consider. I, myself, would side with your brothers. I hope everyone can make a good discussion that is a win-win for everybody.
Your husband deserves your time and care. You can certainly devote time and care to your parents, but it shouldn't take over your life or it will wear you down and affect your marriage. And don't move your parents in with you - that's an even bigger recipe for disaster.
Since you're new to the site, spend some time reading through the question and discussion threads under the Alzheimers area. I don't think you're being realistic about your capability as one person to care for two needy elders with dementia by yourself. Watch the Teepa Snow videos on Youtube for more education about dementia. So I'd vote with your brothers, but maybe not this instant...but definitely in the foreseeable future. Good luck and keep us posted.
There is certainly joy in doing caregiving for our parents well. Part of the issue is that when you're too close to a situation, without the input of other caregiviers/boss/doctor, you might not realize when their needs start to outweigh your capacity. A hospitalization might change their health/mental status suddenly and you might think, oh, just a few weeks and I'll have her up again. Not so much when the patient is 80's 90's. Just some thoughts.
My parents use to walk 2 miles a day, been doing that for decades, but now a mere 6 years later, Dad [now 93] can barely walk down to the mailbox at the end of his driveway... a heart attack out of the blue caused his physical decline [at least he was in the perfect place when it happened, he and Mom were doing volunteer work at a hospital].
When parents can no longer remain in home, you have another decision to face. I personally don't think it is wise or even feasible to bring them into your home unless you hire additional help. But it is your decision. Listen to your brothers. Listen to folks on this forum. But the decisions is still yours.
Would your Dad even qualify for a nursing home at this point? Does he medically need skilled nursing?
Dad has been like this for YEARS...like 10 yrs....I doubt it's really a progressive type of dementia in that way, although I realize it could be.
I have hospice coming in to help shower my mom 3 days a week and a social worker that has encouraged me to find different living arrangements...ie a nursing home. I visited a few she recommended and my dad would definitely not be happy in any...he is with it enough to not find that sort of social environment appealing. The social worker thought he would no be a candidate for AL. I don't want to separate them anyway. Although they fight a lot, they look for each other constantly.
I think for now I'm going to try to keep them where they are, and soon make plans to move them in with us. If things go down hill enough, we will look into a nursing home.
Also thanks all about the comments on the dpoa for hc. I should know a little more than I do about them being a nurse, but it was all for an acute care settings that I was used to.
I currently make almost 2,000$/mo from the VA that I know I need to pay taxes on, and $1000 from my parent's savings per month. I really hate to pay taxes on the latter, but figure if they do go to a nh that would be a big no no.
Thanks all again!!