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It is definitely not an easy decision.
This is not a board that is overwhelmingly anti-home care. Sometimes that can be the best solution all the way around. But your situation creates worries in experienced caregivers because:
1) These are your parents. The family dynamics get turned upside down when they need care and you must be in charge. This is not easy for spouses, either, but there are different issues there. I cared for my husband at home throughout his 10-year journey with dementia. I'd do it again. I'm sure you love your parents as much as I loved my husband, but in a very different way. The child/parent relationship is a tough one to reverse.
2) There are TWO people who need complex care. OMG. My mother developed dementia while I was caring for my husband. Could I have overseen her care, too? No. No. No. I am extremely grateful I that my sisters took over that responsibility, and I could just help out once in a while.
3) There may be some conflict between the two people who need care. This is understandable but no matter how much you "understand" it, could you really stand seeing your father abusing your mother? Could you deal with this without making either of them feel worse, or without coming to have very hard feelings about it?
4) Given their complex needs, it may really be better for your parents to have "strangers" take care of them and enforce the hard rules and make decisions on their behalf, and to have family members come in often and just love them and compliment them and take them treats and do fun things. Don't let a sense of obligation or even love blind you to what would really be best for your parents.
5) You are counting on the help of a 16-year-old. I think that is fine if it means occasionally staying with GGramma while you take GGrampa to a doctor or showing them fun pictures on her iPad. She is old enough to be exposed to the reality of mental impairment. But for heavens sake, this should be in very small doses that do not interfere with her school work, with her friendships, with her social life, and her very important task of figuring out who she is and what she wants to do with her life.
6) You are married. Taking in a parent can be a strain on a marriage. Not always. My brother-in-law was awesome in supporting my sister when our mother lived with them. But now that Mom is in a nursing home I see them relax and enjoy their retirement more freely.
You definitely have to arrange a transition in the next 10 months. Your parents can't continue to stay where they are. I guess we are all urging you to think long and hard about what comes next, before you focus on how to make that work smoothly.
Please keep in touch with us here. We really do want the best for you and your family!
I watched the Glen Campbell documentary on CNN the other night and you can really see how hard it was for his family that included multiple family members and employees trying to keep him safe and happy with his Alzheimers. It's not fair to your daughter or your husband to expect them to take an active role in the care of your parents.
Please investigate and spend a lot of time thinking about this before you pull the trigger. With their medical situations, your folks probably can't take two more moves, so make sure this move is the right one.
Your sixteen year old granddaughter should not be providing hands on care. She should be studying.
I have to say that I think you are out of your mind even to consider managing their highly complex care needs at your home. By all means research the nearby facility, though.
I understand why you want them at least near you. It is kind of too bad to move them now, though, with Dad starting to adjust a bit. But maybe it will make it that much easier and the adjustment period this time around will be shorter. The four months this first adjustment has taken is not excessive compared to others with cognitive impairments.
How would they feel about being separated? It sounds like Mom may do well in a structured memory care environment and Dad might be better in Assisted Living, or even at your home? I am very concerned about your Dad's impatience with Mom. It isn't good for either of them. If they were close enough to spend part of each day together, would that satisfy them? If they each qualify for Medicaid this may be more feasible financially.
It sounds like Mom and Dad need care providers. They also would benefit from loving family. It is hard to play both roles concurrently. If they are in a care facility, there are shifts of trained care providers. You are then free to be the loving daughter, visiting often, advocating for their care, etc.
Due to my fathers anger about being put there, unfortunately my mom feeds off this. She doesnt understand and therefore the only emotion she can often do is cry. But it is mostly when they are in their room together.
The staff there is great. My dad has finally begun coming out to sit a bit outside of the room with others. He has macular degenerative eye disease as well so he cant really participate in any activity that involves his eyes ie: games, crafts, etc. My mom participates each day with the other seniors.
My husband is planning on making any adaptations we may need. From the bathroom to possibly putting a ramp in, although they dont use a ramp where they are now. They are both mobile, my father with a walker. We live in a one level home, so there are no stairs to navigate inside. Both are wearing Depends, my dad mainly because he cant get to the bathroom fast enough. Not sure why they put my mom in them because she hadn't been having any issues with her bathroom habits.
I go down there at least once every 6 weeks to visit them, during the time I am down there I rent a hotel and I spend every moment possible with them there - eating a meal with them, or taking them out for lunch or bringing them dinner and eating with them. So I know what their routine is. Pretty much same as when they were at home, just more cautious. Before they went into the facility, I was going down regularly every other month for a week. I was there for 3 weeks when my dad had to have surgery for a hernia. I was there 2 weeks following my moms knee surgery. So I have always been a very hands on, dealt with my parents kind of thing. More so that my sister who lives there 5 minutes away.
My father would pay me to be their caregiver. As far as respite/backup, it is not me alone. My husband is in the house as well as I can have my 16yo granddaughters help. There are other relatives here as well as friends who have offered to help me, whether they are paid or not. So If i need to take one to the dr, the other will be cared for by someone else.
I am not taking this lightly. I am planning on attending local meetings for caregivers to find out what this will entail. Re: My fathers impatience/persona. He has been like this since he lost his eyesight some 40 years ago. He has always remained bitter about that, and I am sure he has some bitterness towards the illness that has landed him where he is now.
There are little to no resources down there. The AL has the dr come in there, but when they send him out to a specialist (when my mom needed her knee checked by her orthapedist), they took her in a regular van, no handicapp acess etc. If there is an emergency (most has been after a fall where there are no outward signs but they want him checked) they call for an ambulance which takes him to and back. Nobody goes with him, which bothered me because my dad cant see and I just feel someone should go with him when he is taken.
My sister lives down there but she is no help, she is more a poison, and they have a friend who was going to see them, but now that I put a stop to my dad cashing large checks (he doesnt believe in credit cards and cant write checks, so he would go at the beginning of the month and cash a large sum check to pay for dr, groceries, lunch out, gas money for this friend, etc) the friend has stopped coming around so often. The AL told me he couldnt keep that kind of money there in case he loses it or another resident wanders in and finds it and takes, etc. Which we agreed. He wasnt happy with it but he has been fine since this friend hasnt been coming around. He stopped asking for his checkbook. And the last check the friend cashed for my dad was like 1/10th fraction of the checks he was used to cashing for my dad, which he vocalized surprise over. Leading me to wonder, since my father cant see, was this friend taking advantage of my dad and taking some of that money. The director of the AL agrees with me.
I am considering looking into a facility close to us and one that takes medicaid. This way we could at least go visiting them whenever we want to and still have the care they will need long term.
I hope this answers some of the questions.
Please read a lot about what you are getting into. It's not as easy as it sounds. Dementia is not just losing your memory. It is a disease that effects the brain and body.
You say your dad hate the Assisted living and so does your mom. They may need care that the Assisted Living is not providing. Depending on their needs, it may not be a good fit. I would have them properly evaluated to see what they really need. People who have substantial need for daily care assistance due to dementia may require Memory Care. That is a special facility that is more focused on the person in need. My loved one needed that kind of care and it made a huge difference in her overall happiness.
The daily care of seniors with dementia and brain atrophy are each a full time job. It sounds like they are going to need a lot of help around the clock, plus substantial medical care. Because Medicaid rules vary from state to state and their state of residence is going to change, I would try to get them qualified ASAP from one facility to another. Let them get established in a place that can meet their needs somewhere close to you.
Getting them both in your house and then having difficulty affording help or getting them qualified for help sounds like a nightmare. I would not take that chance. Once they are in your house, you are responsible for their care and it's much different than if they are in Assisted Living or Memory Care. They have the equipment to help care for them, transport to doctors, provide therapy, administer meds, etc. Who would care for mother when you have to transport dad to the doctor? Do you have wheelchair access? A van?
There is already discord there, according to your description. With their brain function getting worse, I 'm not sure you fully appreciate what it's like to care for people who may be up all night doing repetitive activities, repeating things incessantly, becoming incontinent, resisting baths, resisting food, agitation, lashing out, crying, and suffering from fractures from falls.
If you feel you can handle such a challenge, then I would contact my local social services office and see about applying for any benefits they may qualify for, but I would first see an Elder Law attorney to run the information by him and see if there are any tips he might offer BEFORE you submit their applications.
I would locate a place that could meet their needs near you and try to transfer them there. If you want to move them to your house later, that would be an option.
You mentioned that your parents money will run out soon and they would need Medicaid to be in a facility [current one not a full Medicaid facility], so that also means your parents wouldn't be able to afford to pay for a full-time Caregiver to come in to your home to help them.
You will now be their 168 hour week Caregiver.... not one person, two elderly people. Are you ready for that? Will you take the first shift? What about 2nd shift?Any relative who could help you? Who will do the 3rd shift if neither parent sleeps through the night?
Before moving your parents into your home, look around at the Medicaid funded continuing care facilities in your area. It would be great if your parents are living where they are on constant contact with people of their own age... dining together in the common dining room... enjoying the activities, and having 24 hour care. When the employes leave their shift, they get to home to rest, coming back refreshed the next day.
Start the Commonwealth of Virginia Medicare paperwork rolling now for future use.
Do you have any resources that you can rely on for support when his behavioral problems become more aggressive toward your mother? How will you protect her?
You write that you've lost your job. How will you support yourself and them as well? You food and travel costs are going to increase. Do you have funds in reserve for this?
As to adaptation, what facilities are there in your house? Do you need to make changes, add grab bars, ramps, etc.? How will you pay for them?
You write that they will not do "full Medicaid" - I'm not sure what this means. Are they opposed to it, or is there an asset issue?