We have been seeing each other a little over 2 years and nothing has changed since day on. In fact, it may have gotten worse. In the beginning we saw each other twice a week. Now, only once, or even every other week. I want to see him more often, but I know the stress he is under, and I feel like I'm nagging and causing him more stress if I complain. We live 30 minutes from each other so it is not easy to just come by on a daily basis for a short visit.
His dad is very demanding and wants him there 24/7. At first, it was just a selfish thing, now it has turned into that his dad is getting dementia and almost can't be left alone for long periods of time. I try to be understanding, but it's hard sometimes. Here's the clincher--he has never left home because his parents have always been very posessive of him. His mother didn't want him to date, or marry, or leave their house. He did everything for his mother. Took her grocery shopping, clothes shopping, doctor appointments, etc. She died about 11 years ago and he continued to live there to take care of his dad, who is 95.
My BF did go to college and did work as an engineer for several years until they closed down the company he worked for. Since then he has worked part time jobs while taking care of his dad.
His dad refuses to have outside help come in so that my BF can get a break and we can have more time together. He also refuses to go to senior day care centers or assisted living facility. He constantly cuts my BF down. I think he does this to lower his confidence so that he will believe that he needs his dad to survive and he won't leave.
My BF tells me he would've gone off the deep end if it wasn't for me. But, I feel like I'm nothing more than his once a week stress-releaser, and nothing more. I know nothing will change until his dad passes. I wasted the best years of my life in a very bad marriage. I'm 46 and not getting any younger. My BF is 51 and he still hasn't had a life of his own. His dad could live another 10 years.
Am I wrong for not wanting to wait until I'm almost 60 to start my life together with him? I know if I broke it off with him it would send him over the edge, and for that i would feel terribly guilty. I love him very much and i just want to be with him. The way things are now, I feel like we have an on-again-off-again relationship because we see each other so seldom.
I know this sounds more like an advice for the love-lorn letter, but I am desperate, here. Any advice would be greatly appreaciated. Thanks, in advance.
If you and your BF got engaged (truly engaged), what is the worst that could happen? No reputable attorney would advise a cranky old man with health problems including dementia to change his will.
The Eldercare Handbook: Difficult choices, compassionate solutions by Stella Mora Henry and Ann Convery
Eldercare 911: The caregiver's complete guidebook for making decisions
Elder Rage or Take my father please, How to survive caring for aging parents - this particular book is especially appropriate for your BF now and may save him a great deal of grief in the near future and long run as he goes through the dementia journey with his father.
I think more than anything, knowing that there are others who are going through the same thing and have dealt with pretty much every problem he is dealing with will help your boyfriend - which is why I recommend the message board caregiver's forum on the Alzheimer's website for your BF. There are solutions to nearly any problem there and if he can't find the problem on the board he can post it and get some quick advice on solutions from people who have been there, done that.
I once dated a guy who I know now was a hoarder (this was before hoarding was as publicized as it is now). He had a beautiful house that was filled to the gills with stuff. He had little pathways through the house to get to his bedroom and kitchen. Cobwebs/dirt/dust everywhere. He was a very smart guy (was an MD). I (being a psychology grad, lol) just knew I could "help" him. So I spent one whole Saturday cleaning his kitchen so we wouldn't get poisoned from eating food from it. I was just sure that when he saw the sparking kitchen, it would spur him to want to clean up the rest of his house. To make a long story short, he didn't appreciate my "help" and saw me as controlling. We parted ways, which was fine with me. I couldn't have lived in the conditions he was very comfortable in. He had some psychological issues that were more than I saw and more than he was willing to face at the time. So good luck with your BF. He may or may not be willing to work on changing.
It is also not unusual for caregivers to have their own counselors or psychologists to help them get through this ordeal. Believe me, there is nothing pleasant about watching your parent turn into an angry monster who does crazy unpredictable things and then looks to you to fix it and is angry if you can't and then watch them fade away with this disease, becoming someone who can barely speak and eventually become bedridden. It's terribly tragic. It seems that whatever the worst aspects of your parents personality are, they become magnified by this disease and then it actually gets worse, where your parent turns into a brain damaged shell of a person who can't communicate and doesn't seem to know you are there or recognize you and either starves to death or dies of a complication such as pneumonia. And there's nothing you can do to stop it. There is no effective treatment and no cure. You know children love their parents. Even if their parent was less than a good parent, somewhere, deep down, children want their parent's love and approval. Then this disease happens and that person who was such a powerful force in your life is slowly destroyed by it. And as the adult child, you have no control over the disease but you can manage the situation in the best possible way so that there will not be any regrets later that you didn't do all you could to make sure your parent had the best possible care. The thing is, the best possible care is really from someone who is not as emotionally involved with the parent and doesn't have a history with them and also from someone who is well rested and able to cope with an extremely demanding patient because the caregiver knows they will be going home after their shift. That's why your BF needs to begin marshaling resources now - to make sure his dad gets the best possible care. No matter how well-meaning, it is really impossible for a son to be the best caregiver. If you want a job done right, hire a professional to do it.
As to payment, if the father or his wife was ever in the military, there is the VA which offers benefits to low income veterans. There are also medicaid benefits if his income level is too low to pay for his care after all of his assets have been used up. It may be that the father purchased longterm care insurance for himself at some point which can be used to pay for caregivers now. If not, then basically, his money needs to go to pay for his care.
An in home caregiver costs anywhere from $16 to $25 per hour. It is best to go through an established agency as they have completed background checks on all their employees, provide training in dementia care and also have people they can switch in and out as needed, so your BF will never be faced with a situation where he needs a caregiver for his father but one is not available. Dementia care is really a calling and it takes a special person to have the patience to do that. All of my parents caregivers are very unique and special and have been really good to my parents. It is such a relief to know that people like this exist and are there for you and your parents in their time of need. The really great thing is that the caregivers come into work fully rested and not stressed out and they are fully trained and very experienced in dealing with dementia patients, so it is so much easier for them to deal with our loved ones. If our parents snap at them, they retreat and try again a different way until they get our parents to do what they need to do. The only issue with having caregivers from an agency is in a situation where the weather is so bad it is impossible to get a caregiver to the parents home. But that is not something that happens often. In fact, this last winter, the caregiving company was so concerned about my parents, they hired professional drivers with cars equipped for the weather to pickup the caregivers at their homes and drive the caregivers to my parents house so there was at least some degree of coverage on ice days. And the caregivers do become emotionally attached to the people they are serving. It's really a very heartwarming situation and if your BF saw how incredibly well this works, I think he wouldn't hesitate for even a second to hire in caregivers. The caregivers are also great sounding boards and great about telling you what is needed. For example, right now my mother has a bowel impaction - a not uncommon problem with dementia patients, so the caregivers called in one of the company's registered nurses. She is going to solve this problem by giving my mother an enema and I don't have to worry about it. This nurse knows what she is doing, has done this before and has developed a good trust relationship with my mother. This will prevent an extra doctors visit. If something else was going on, the company communicates about it to me. If they think mom needs to see a doctor they tell me and also they helped me to get mom on the medication she needs for her agitation and have notified me when the dosage needed to be increased. Later on in the process, they will advise me of when it is the right time to call in hospice and arrange everything for me. The value of having the right people to advise me on this situation is immeasurable.
The way I think about this situation, although I have a lot of medical knowledge, I'm a business person, not a doctor or nurse and I haven't had any experience with dementia prior to this. No one else in our family ever had dementia. So I've had to learn everything from the ground up. I don't have siblings or any other relatives to advise me. But one thing I do know is that when you are faced with a situation like this, you need the help and advice of professionals who have been there, done that and know what works and what doesn't. So that is why I hired a home healthcare company that specializes in working with dementia patients. And they have been absolutely wonderful and a great asset to me and my parents. I hope your BF will do the same and I hope that he will seek a caregivers support group and also counseling for himself. Losing our parents is one of the toughest most painful ordeal that we face as adults and the complication of dementia makes it worse than we ever imagined it could be. But having the right resources to help and support us and our parents through this ordeal makes all the difference.
If your BF does not have medical and financial POA, then he needs to contact an eldercare attorney and seek guardianship of his father. It costs $10,000 but the costs can come from his father's estate once his father has been declared incompetent. At that point, your BF would have full access to his father's finances and estate in order to make sure his father got the care he needed.
Im sure that happens more than we realize.
Thank you for a 'Positive' look at a parent being in a Care Facility. And its WONDERFUL that your
Friend can be a Daughter that is well rested,
Harbors No Resentment, & still leading mostly
A 'normal' life schedule. And Mom was Happy!
That's what we all want anyway.
I am a firm believer that nothing is absolute and not trying will most likely achieve nothing. What harm will be if he doesn't respond? However may i suggest keep it more personal. Don't use literature but rather sit down and understand dementia deeply, then sit him down and explain the science of it, maybe show him the scans of his brain (if yall have any done periodically. Another thing you can try is if he has a geriatric psych there is a test they perform every visit that can show the decline as well. Good luck
As for our relationship. We've pretty much worked things out and have come to an understanding. He has been a lot more open with me. We still don't see each other as much as we'd like, but that has a lot to do with our conflicting work schedules. No engagement ring, yet. He is interviewing for full time job positions. Right now he is only working part time. If he starts working full time he is going to have to put his dad in day care at least twice a week. a lot of things still pending on other things. We're learning as we go.