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.
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...
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.
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.
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.
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.
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.
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. ;)
If the option of moving him in with you, or keeping him in his home is out, then move him to a facility near you. So you can visit and check in on him.
Explain to him how much you love him and would like him to live close to you. Maybe find a good facility and take him to visit, so he can see. Fear of the unknown restricts peoples decisions. If he sees its a good place he might not be so afraid and he might Lord willing want it.
I am so sorry for your situation, it is a tough one. I understand too the guilt you are afraid of. But I believe there is an answer that will be best for all of you, hang in there.
May God bless you with the answer you need.
I will pray for you.
You could opt for Memory Care now then he will not have to adjust a few months? or a year or two down the road. Problem with that is if he is high functioning now he may really not fit in in a Memory Care setting.
Another option would be to go Assisted Living that has a Memory Care wing on site. This way he can live more independently then move to Memory Care when he can no longer function on his own.
The problem with this is he will have to move again and get used to new staff and a new routine. And that can be difficult for anyone.
Your third option that I think is not an option would be to continue as things are until some catastrophic event forces you to make a decision. This is what usually happens and there is a stop between home and Memory Care called Rehab. Depending on how severe the dementia is will determine how well he would do in rehab.
Your parents raised you to be independent, have a family. Part of the process is leaving your parents for your spouse. This is what is important in your life now.
Yes it is difficult to see your parents declining. I think part of that is we then realize that we also are getting older and these same decisions will be made for ourselves in the very near future. And we don't like to admit that! (Great way to bring this subject up with spouse and your own kids...how do you want them to deal with you in the same situation. Do you want them to do for you what you are doing now?)
If your Dad is aware enough you need to have a good heart to heart talk and say that you can not continue the way things are.
Also if you consider that the cost of AL he would get meals, he would have no gas, electric, homeowners insurance to pay. Memory Care would be a bit more simply for the fact that more is done for each resident.
You might want to talk to an Elder Care Attorney to discuss options for trusts, application for Medicaid if that may be a possibility.
Also if your Dad is a Veteran you should determine if he qualifies for assistance through the VA.
As everyone here has said, you have a husband and life. If you want to keep your marriage together you need to move your dad close to you. NOT IN WITH YOU!
Remember this, he is going to go down hill no matter where he is. Try not to feel guilty because you can't make him live forever. None of us are going to get out of this alive.
As for me, I must admit I am not a care-taker. Instead I am a 70 year old with no family living in this country so am alone. I fall into the poverty category unfortunately as I have many chronic illnesses and live only on disability. Lately, I have been trying to find out what my options would be should I get seriously ill and not be able to take care of myself. I called around everywhere I could think of with very little hope. Everything is for profit here. I considered going back to England but would find the effort of giving up my home (and my cats) too overwhelming and would be hardy able to afford to live there either.
Today, I found a leaflet from a home care agency attached to the local hospital who take care in the home 24/7. I called them up and was told that I could have their services if and when I needed it 100% covered by Medicare, if approved by my doctor of course. I have United Health Care Advantage Plan and it seems to pay for all this like Medicare. I am wondering if this system would apply to you and relieve you of the expense of private agency care? Perhaps I am on the wrong track seeing as you have looked into this more than I have, but you might like to investigate it for your own piece of mind.
You can also apply for free financial aid to get your financial status up and running.
We are very lucky to have an activity center here that provides many different resources like meals, medical equipment, weekly classes and programs, blood pressure checks, and even respite care for people who need a break like you.
Also, your father may well be a candidate for meals-on-wheels, and many other programs out there. Try Health and Human Services for details. You will be amazed at what is available for people at home. He will not die if he is put in AL as others have pointed out, but these arrangements might save you some aggravation while keeping him in his home.
Your questions have resulted in some good discussion and advice, some of which is conflicting, but that's due to differences in everyone's situations and experiences. Based on my experience, unless your dad has an active social life where he is currently living and is reasonably self-sufficient in spite of his late-early/mid-stage dementia, moving him close to you now will probably work out best. My dad didn't want to move from his home, but once my wife and I moved him into ours, he quickly forgot ever living anywhere else except his childhood home where he believes his parents are still living and where he still wants me to take him almost every day. After being his full-time caregiver in our home for 3.5 years we moved him into the best memory care assisted living facility we could find, which was luckily within 5-mile bicycling distance and I visit him daily. At this MC facility, the staff is more qualified and the staff/resident ratio is higher than the minimums required by the state, so I don't ever worry about my dad's needs not being met.
When I decided my wife and I could no longer provide the 24/7/365 care my dad needed (exhaustion does take its toll), I let my 7 siblings know that our dad would be moving to a facility. Some siblings suggested that paid in-home care givers would cost less, so I investigated that option and found it would cost more than twice as much as the best-in-class MC facility that I found. And in-home care would have required even more active oversight of his care by me than it does at the MC facility. And at home my dad wouldn't have the additional social benefit of being around other residents, family and staff.
You mentioned that your dad almost sold his home and purchased another in someone else's name. That would have been a huge mistake if it turns out he needed Medicaid within the following 5 years. Apparently your current DPOA(s) for finances and health care have already withstood the test of nefarious family members, otherwise I would suggest that you become his guardian and conservator. So, looks like you're well-positioned in that regard.
In short, you've probably got a tough road ahead of you, but it looks like you're well-positioned, asking the right questions, and otherwise doing everything as well as you can for your dad and then some. As others have said, don't forget to take care of yourself and your family, which will also allow you to keep the energy you'll need for overseeing your dad's care.
His memory issues, before he was diagnosed and even after, have caused very serious issues within our long-distance family who I did not have much contact with before my stepmother died. i.e. he would tell them one thing "I want to move to XXX" and they would get scrambling making plans, even though he told me he didn't want to move no matter what one week prior. Because I knew he was so back and forth in what he would think and say, I did not move ahead with a huge cross-continent move which would have required all of his funds sent ahead of him to purchase a home in one of his other adult children's names. The whole thing felt way too risky on every level. Anyway, lawyers got involved and it's been one of the worst times ever. All that to say he is not making any good decisions and his memory issues have created serious havoc.
Good to hear the pros and cons of various MCs, SNF, etc. Does anyone have experience with actual HOUSES that have a small number of seniors (6-10) in their care?
Thank you so much for the kind words.
But I'm confused and I'm hoping you can shed some light on your view.
Sunbrooke's dad has Alzheimer's but you think a Skilled Nursing Facility is a better fit than a Memory Care facility? You said the MC isn't prepared to handle a patient "when they go downhill fast." Would you elaborate what that means? Do you mean the level of supervision or during the active dying process?
I understand you feel you need to be there everyday day to oversee care that isn't being done. Would you kindly tell us what the MC isn't doing? Maybe I've missed something in my moms' facility that I should be looking into.
(Please don't think I'm writing sarcastically, I really am interested in your particular situation.)
I guess I looked at MC's as locked facilities for those with dementias (whatever type) but who were basically physically well. Does your loved one require more physical care?
Thanks ahead of time for enlightening me.
Sue
Most elders are really attached to their house. My Dad, thankfully, wasn't. It wasn't like it was a handed down family home. Once my Mom passed, Dad was ready to downsize into something more comfortable. He was tired of paying real estate taxes, hiring people to fix things he use to be able to fix, hiring someone to mow the lawn, shovel the snow, and major fix-it items such as a new sump-pump or new refrigerator, etc.
The largest cost were Dad's caregivers, worth every penny, but the cost was draining Dad's savings. He liked the idea that moving into senior living would be soooo much cheaper. Saving money was big with my Dad.
Dad's Assisted Living/Memory Care place was great. Dad really loved the place, it was cheery and pleasant, the Staff was attentive, and boy was the food great :) Dad could even budget to have his 2 favorite caregivers take turns working there in the mornings, it gave him a good routine.
Lock down?? That was only in the evenings, no different then us locking our front doors at night. During the day, the front desk person knew who was ok to go outside and who needed someone with them. The place had several sun rooms if one wanted to enjoy the sun-shine. Places like this depends on where one lives. Seems like the large metro areas are filled with such places that feel like a hotel when you want in.