Torn between home care and assisted living, any thoughts?

Mary Kathleen, I love it - studio apartment sounds so much better than AL, but why did it take so long for your father to settle in?

sunbrooke: I have concerns about those adult children of his "whipping around him like Medusa." Have dad's funds been secured? Good-I did see that you've involved APS and an elder law attorney.

Wow, thanks everyone for all of your insightful answers. I am grateful. The message seems clear that AL is likely the place he needs to be. However, I am looking at whether it's better for him to stay in his current state (AL is much cheaper, and he has several friends/caretakers he already knows who could visit, and I could fly in) -- or, move him to my state which is much more expensive and I would be his only visitor. His other family lives in another country but would likely visit him and no doubt fight my decision to move him, though they aren't the ones daily working to keep him in his house and agonizing over his safety and last-minute caretaker cancellations which seem to be the norm.

We had a similar situation. When our mom died, our dad went down hill. But he even refused in-home help. Then he ended up in a hospital and was informed he could no longer live by himself. The thought of my dad being in "one of those places" tore us up.
We started looking around and found a wonderful place. There was an adjustment period and his "happy" pill helps take the edge off his anxiety, but our dad loves it there now. I call him every morning and we have "our" day once a week. We arrange his doctor appointments, grocery shopping and lunch out on that day. It has worked out very well. My sister tries to call each afternoon and visits once a week as well. We went back to being his daughters and have been able to spend some special time with him. Now we can relax knowing he is content and safe and well cared for.
As for money, he worked for it and so we had no problem using it all to make him safe and cared for. The rehab facility got us in touch with Medicare Done Right who worked up a Personal Services contract which set aside some money for those actively caring for him. Once Medicaid kicked in he had no more financial concerns.
Just do your research and make decisions that will be best for your father and those actively taking care of him... meaning you! And if your siblings in another country think they can do better they can bring him over there. ;)

This trip is a long journey and you need to make decisions now (while dad is still thinking reasonably well) that support the long term. Recognizing your limits and having an honest discussion with your dad is very important. You will probably not be able to support your dad in home care when he progresses to the point he needs someone around most of the time. My mother lives with me and is still fine alone for a few hours at a time, but I moved next door to extended family so I would have help "keeping an eye" on her when needed. I also hired a caregiver who spends most of the day with her and does some light housekeeping when I'm at the office (not sure she needs this yet but I feel better).

Adjusting to a new environment is going to be hard for your dad, but it's easier sooner rather than later. Acknowledge that leaving his home is a difficult experience but that you need him closer to you. He may be to handle living in a senior apartment complex if can provide support. Consider moving dad to an AL near your home so you easily take him to appointments and visit around your schedule. Investigate some options and then talk with your dad about what he wants to take with him to his new home. My dad likes to "snack" frequently so the AL with a 24/7 kitchen was a better fit than a more structured one.

Do what you think is best for your dad and don't worry about what other people (particularly those who are not providing care) think about it. Please understand that taking care of yourself, including your job and your marriage, _are_ good for your dad. Let go of the guilt for the things you cannot do. I told my mother that I wished I could take care of her in her home the way she was able to care for her mother (my grandmother), but that I wasn't a dedicated homemaker and would have to work a job so it just wasn't possible. Develop a plan that works for you and dad and let the rest of the world enjoy the hours talking about it. You may want to avoid toxic conversations with other family members by writing letters telling them about dad's move, selling his house to finance his AL expenses, etc. You can even use the elder law lawyer as the contact point for family questions/concerns.

I placed my dad in a home care AL, so if he chooses he can stay until he passes. That option as well as the price was what decided me. He is signed up with a PCP that comes right to the house (NP mostly), almost all of his medical can be dealt with right there. In his home state he would never be able to afford the care he receives in mine. I know this as he was determined to go back, after checking it out I was floored at how much more expensive this was in his home state. Financially you are right to leave him, socially, hmmm, my dad has made friends with 2 men at the house and quite frankly it is enough, they all have different issues and they help each other out, I honestly believe these are the best friends he has ever had, some type of brotherhood thing. So do what works best with all things considered, if leaving him allows him to stay until passing financially, I think that is important, I don't have to do anything for my dad, other then personal hygiene things, the home is paid to do all other living things, we have a paratransit that gives seniors, disabled etc cheap rides. My dad was pizzed about being put in a home, oh well, I was not willing to give up my life, I know that sounds awful but, I do not believe that a parent has the right to say, I took care of you, now it's your turn to take care of me. Nope, their parents took care of them, I did not ask to be born and I won't accept the guilt. He had his life and he doesn't get mine. I help him by making sure he is safe, fed, warm and gets his meds by trained professionals. He tried to run the FOG trip and I struggled but at the end of the day I was angry that he could care so little about me, as long as he got what he wanted it did not matter what that cost me. Not okay anyway you slice it, it's selfish, manipulating and narsistic, period.

Please do not ruin your life because of his selfish words, no matter what, you are not responsible for his happiness, only making sure his needs are met and he is safe, facilities provide these. DO NOT move him into your home, he will devour you and wreck your marriage, his words tell me this. It will be him all the time and no person can ask that of a spouse, you be 2nd or even 3rd in your own home and by the way, your dad will try to be the head of your household, most likely at your husband's expense. My dad thought I should treat him better then I did my husband and he was only here for 4 days.

I pray that you find a home that is a fit for your dad, soon.

Send a little special love to your husband for putting up with this trial and reassure him that plans are underway to be back in his arms asap.

besticanbe, Actually, he is my ex-husband. Years ago my two girls decided by themselves without any input from us that my oldest daughter would care for her dad and the youngest one would take me.

The straw that broke the camel's back happened when they found out he was dependent on Ativan. When his prescription ran out he would 911 and have an ambulance take him to the ER for another prescription. My daughters were horrified. They said not to do it, but call his youngest daughter, who lived near, and she would take him. The next morning he did it again. Oldest daughter came unglued. She is a retired fire captain and told him how she had done CPR over 45 minutes waiting for an ambulance, how she had people die in her arms because they couldn't get an ambulance. While people like him used one when they didn't need to and put it out of service for life-threatening calls. So when she went back to Washington, she took him with her. He thought he was going on a vacation, didn't know he was being moved. If he would have followed a plan which he was capable of, he could have stayed where he was. For over 2 years, I begged him to decide what he wanted to do when he had to have help and he would just tell me that he let life happen. Well, what happened was he was moved from an area where he had lived for 61 years and it never froze to 37 miles from the Canadian Border where the temp gets down to -2 degrees and has plenty of ice and snow.

My daughter moved him in with her. She thought if she helped him take his meds properly and he ate properly she would have the father she never had. He is very passive aggressive and would thwart her at every turn. She is a single 53 year old with 40 acres and a lot of animals. He had no regard for personal space. She almost shot him one night when she woke up to find him standing over her bed. He wanted a glass of water. He was perfectly able to get it himself, just wanted to be waited on.

Physically, he could have helped her and stayed with her. He just wants to be waited on hand and foot and she had neither the time or inclination to do it. She did tell me she didn't know how I stood it as long as I did.

After about 6 months he finally gave up pouting (my words) and made friends with people there. She still has to spend time taking him to doctor's visits, etc. but she is ok with it.

sunbrooke, having now read your guardianship question asked two months ago, I have a little better understanding of your dad's situation. In your description yesterday you said assisted living (AL) is much cheaper in the state where your dad currently lives and he has several friends/caretakers that could visit him. First, given your dad's fairly limited financial assets, it seems that the cost of AL will not be an issue for very long, i.e. within a year or so he'll need to apply for Medicaid and the cost of AL will no longer matter to him or you. Second, regarding his friends/caretakers who "could" visit him, I've seen that as dementia progresses, friends (and relatives) visit less frequently and some/many of them stop visiting at all. As for the caretakers, if you're referring to paid staff, there is very high employee turnover in this field, so not moving your dad should probably not be influenced too much by him currently knowing and liking those who provide his daily care.

When I was faced with a similar situation as yours, I created a decision tree to help wrap my mind around the dilemma. Making the decision was still hard, but the decision tree kept me from forgetting that keeping my dad in close proximity was best for him because I was the only one of his 8 children who was willing and able to commit to ensuring his needs were always being met. In other words, the care facility 350 miles away that was near where he lived before I moved him into my home and that was less than half the cost of the one near me that I chose for him would not have been as good for him because his care would not have been constantly overseen by one of his children. It appears that you are the only person your dad has who is as committed to constantly ensuring that he receives good care and, trust me, that will be harder for you to do by flying in regularly and also whenever an emergency arises. (My wife, as guardian for her aunt, kept her in her hometown for AL and we had to make many short-notice trips there.)

There is the option of putting him in AL in his current city and then, after his memory has faded even more, moving him to AL in your city. I can envision that would work for some people, but not to well for others, and having two moves can be harder than one -- it depends on your dad's dementia level and precisely what he is clinging to in his home town.

I'm assuming that your DPOA is still solid after having been thoroughly tested by the trials your half-siblings put you through. But if there's any doubt about the DPOA, then guardianship/conservatorship remains the final option.

I’m sorry to hear this. When my parents were declining, my brother was at least supportive even though he didn’t live close enough to help.
As for your dad not wanting to move into assisted living, not only would it be better for everyone, but he is not the only person with dementia to be recalcitrant about this. I have read many other things on this forum where people comment on how their parent hates AL one day and loves it the next. Dementia patients don’t know which end is up much of the time, so you can’t depend on getting the truth from them.
Consider moving him to a facility near you so you can visit him and keep tabs on his health and the care he is receiving.
Hope things get better for you soon. God bless.

I support "bicycler's" response to you! Rather than give you more advice on what you should do, I am going to propose that you engage professionals who have the background and experience to help you. You mentioned that your dad has dementia and probably Alzheimer's. "Dementia" is a term that is applied to a range of diseases to include Alzheimer's, though there are others. Although outwardly these diseases appear to be similar, they require treatment that is customized to that disease. I encourage you to acquire the services of a medical doctor who is certified as a gerontologist to guide you to the best treatment for your father. You are also in need of an attorney who specializes in elder law, especially since there are people close to your dad who are a danger to his well-being. Likewise, an elder law attorney can direct you through the Medicare and Medicaid shoals. Again, I agree with bicycler that your father's house sale issue may come back and bite him! Moving an older adult from their home to continuing care retirement community (CCRC) can have unwanted emotional and possibly physical impact on an older adult. Keep in mind that older adults seek two conditions in where they live: 1. Mastery; 2. Security. That is they have to feel that they control that space, and that they are secure in that area. For planning purposes I recommend that you look into small home CCRCs. In my opinion "Green House" (R) communities are the best! See: www.thegreenhouseproject.org/about/find-a-home
An additional resource that can help you, especially since you are working with your dad long distance is the "Society of Senior Advisors" (CSA). See: www.csa.us/?&gclid=EAIaIQobChMIudS0ifPg2gIVVAeGCh1eOQvpEAAYASAAEgKa3PD_BwE
Your dad who probably has incurred dementia is no more narcissistic than a person who has incurred cancer. When he tells you how he feels about something, he is not trying to make life hard on you; he is sharing you with you his needs. Partner with him to come to decisions to support him.
Lastly: Take care of yourself. Don't hesitate to call on professionals to support you. I wish you the best...

Hey, Sunbroke, I recommended his being in a facility near you, but after reading the circumstances you laid out, I agree that perhaps it would be better for him to be in AL where he is now. Hope all works out for you. These decisions are never easy.

First, don't bear guilt. It's a hard decision for any family. Ideally if you can find a way to have them in a home care setting with adequate caregiver support, share support, that would be ideal for most families, and allow you to be a Daughter, not only the tireless caregiver. Often when caregivers are so burned out being caregivers, it's hard for them to be good members of their own families, which is why you are hearing it from other family. It's never easy, but I would encourage you to explore other options for home care in a more caregiver supported model.