I am new to caregiving since my dad's wife died last summer. It's been very full on! It's affected my new marriage as I've spent half the year away from my husband (we live in a different state than my dad). It's affected my work as I have had to take months off and can't concentrate on it when there has been so much work to do for my dad, who has dementia and probable Alzheimer's. I have kept him in his home, employing various caregivers, finding housemates, managing his house and finances and health care from afar when I'm not there. I am only 40 and utterly exhausted. I have become filled with despair as I realize it's either this life or terrible grief once I lose my dad, my only parent. Husband gives me a hard time and insists I'm being foolish keeping him in his house instead of putting him in AL. My dad tells me it will kill him if he has to leave his house. Dad has several adult kids in another country who have made my life hell, despite having been mostly out of the picture for the last few decades. All of a sudden they are whipping around him like a medusa and critizing everything about his home and care, down to the type of cheese his caregivers should buy him. Not to mention they have acted in criminal ways in a supposed effort to "rescue" him, such as trying to remove all his funds from his bank, threatening to abduct him, calling APS, trying to get him to change his POA papers (I am currently POA for H + F), etc. I have reached seriously new levels of despair in the last few months, made worse by his untrustworthy long-lost family and my husband's unhappiness. I have just been trying to do what's best for my dad and in the process am giving up a lot. Now the big question I face is whether to hire FT caregiver in home, or move him to AL. He tells me it will kill him to move, could I live with myself if he just went downhill upon moving? Alternatively, it's killing my vitality and draining me to keep him in his house. Would love to hear some thoughts.
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. ;)
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.
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.
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.
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.
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.
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...