My father is 85 years old and has severe neuropathy which greatly affects his mobility. He relies on a walker and is a huge fall risk. After my mother passed 11 years ago, my father remarried. My stepmother is from another state and neither wanted to give up their homes, so for years they traveled back and forth together. About 6 months ago, my stepmother suddenly decided she wants to spend more time at her home and focus on her health and will visit from time to time. She will visit for 2-3 weeks, then return home for 2-3 weeks, at some times longer.
I am an only child so this sudden decision left me struggling to make arrangements to make sure he is cared for. I knew the day may eventually come but I wasnt at all prepared. Since then I have taken on preparing my dad's meals, maintaining his home, shopping, taking him to all of his appts, anything he needs while he still lives in his home. It has been stressful, but I have made it work. His condition is getting worse and he had a fall a couple of weeks ago in which he broke his arm. He has been unable to get around with his walker without assistance since then. Fortunately my stepmother has been here to assist, however she plans to leave soon and will be gone over a month. At this point, I will likely need to hire home care to cover during the day while I work, and move in with him to care for him in the evenings/nights until she returns/he recovers from the broken arm. Even once he recovers, my biggest concern is being a fall risk during the time he is living alone.
Since the fall, my Dad has brought up that maybe it is time he look at assisted living because "he knows it would be easier on me"... I had already been researching AL, and thought I would be relieved that my Dad was open to the idea and even brought it up, but I'm not. The overwhelming feeling of guilt has taken over. At times, I feel like I am being selfish for not dedicating more time to his care. My fiance has been a lifesaver and is always there to help, but it has affected our life greatly. Our daily life is affected by ensuring his needs are met first. We are unable to make any type of plans due to me being my Dad's caregiver. I have no relatives near, no back-up or support system.
This forum has been a great help and it helps knowing I am not the only one feeling this way. This has just been very hard on me physically, but more so mentally. I feel so overwhelmed with constant worry about my Dad and the decisions that need to be made. It causes me to feel depressed, affects my focus at work and other things. Looking for some tips in dealing with the effects it has on the mental health of the caregiver?
And wondering if I will ever feel like I am making the right decisions?
Since your dad's current mobility is from an injury, check with his insurance company to see if they will cover home health care aide or rehab while he recovers. If you can get an aide or rehab, then you can address his mobility issues and assisted living after he has recovered.
I could tell taking care of my dad was taking a toll on my mom but they would not move out of state with or near us as my dad was adamant about staying there. In January, my mom had to have a pacemaker put in and after that, her mental state rapidly started declining. It was obvious they both needed more help and care than I could give them since both had had falls in recent months. They became open to AL so my husband and I with the help of an agency found a great AL. They agreed it was time so we packed them up for the move to an AL which was pretty near their hometown so friends and other family could see them often. It was the hardest decision I’ve ever had to make and I felt guilty about not being the one to care for them but after 5 weeks of staying with them 24/7, my husband and I knew they needed more than we had to give them. That’s why nurses have shifts we decided because no one can do full time care for 2 people who have many needs and who don’t sleep at night, btw. It was hard and I still feel guilty at times but I know it was the right decision. They are slowly adjusting after 2 months and really have no complaints about where they are in a 2 BR, 2BA apartment. It’s just not home. And then with dementia, you never know what might be off one day and better the next.
I wish you well on your decision but try and not feel guilty. Some have said, I need to take care of them because they took
care of me growing up. But I been reminded that adults are not infants or children and their needs are far different. I AM taking care of them by finding a great place for them that is safe and they are well taken care of 24/7. And I can sleep at night knowing that if something happens, someone who is a professional will be there immediately.
i have been paying for long term insurance for myself and my husband for about 20 years now since, tho my husband disagrees, i am determined to live at a care facility when it’s needed.
I know everything wont be perfect but am hoping for the best ... nice apartment/having it cleaned regularly/good food/movies and games/24 hour help when needed/trips on the facility van when we need to go to the doctor or just get out for awhile.
i do not want to stay at home with no one to talk to except the meals on wheels person and an occasional caregiver !
My husband pays for all mutual bills except the long term insurance but the cost right now has risen to considerably over what my social security pays so i am going to need to get a job. If i cant afford insurance how can we possibly afford monthly facility charges without it ?!
the point of all this ... maybe your dad would like some of the things im hoping will be supplied to us when we are ready for it.
It sounds like your dad still owns a home. Is that correct? Are your plans to sell the house and use the proceeds for assisted living?
If you are the one your dad relies on to care for him, you should have the authority to do so and that means getting durable power of attorney both medical and financial. In the event he becomes incapacitated - even temporarily - his wife is first in line to make decisions for him. Do you trust her to make end-of-life decisions for him that *he* would have wanted? Does he have a living will?
I have always had a very good relationship with my stepmother and hate the situation now, but I know at this point my priority is to do whatever is in the best interest of my Dad.
I feel like it is hindering her lifestyle as she likes to be on the go and do things and my Dad just isnt able to any longer.
And it hurts to see him hurting because I know if the roles were reversed he would be there to care for her 100%. He is a very outgoing, social person so I do think that would be a benefit to AL for him. It has been hard to watch him being depressed during the times she is away and he is alone.
You don't have any back up system now and you aren't going to in the future either with no other relatives to step up - and s'mom seems to be stepping back. One arm, on a walker, is not going to be an easy task.
On the other hand, if you/fiancée have no permanent home at this time, moving to his house with care is an option. However, don' rely on help only during the hours you work. If dad can afford more care than 8 hrs while you work, go ahead and line up care for more hours. That way you aren't rushing home just to relieve a hired caregiver. Will allow you and fiancée more time together instead of just being in the same house tied to the caregiver role. This is all going to come down to what dad can afford and for how long.
Have already been looking at AL and scheduling visits, but am concerned AL will not take him at that level until we get him out of the arm cast in 6 wks since he requires assistance with everything right now.
You'll have to excuse me, but can I just point out that from the sound of your excellent father and sensible stepmother, these are not your decisions. They are making choices they are happy with, and God bless them practical choices too.
Less tearing around like a blue-arsed fly. More respect for your father's ability to decide for himself. That's my advice.
like one lady said it is actually his wife’s responsibility. I mean you can help. That’s a gripe I have with my husband’s kids. They don’t come nor call and I’m not going to worry about it. I asked his brother to come sit with him while I took care of something else. He couldn’t.
To make a long story short just let someone else have the worry you just enjoy your dad.
I could understand if she was not physically able or needed care herself, but she gets around very well. I think that is what it boils down to. She likes to be on the go and he is now holding her back. When they first got together they traveled alot, She had never traveled much at all and my Dad took her to Europe, Hawaii, drove out west for several weeks. They were always on the go.
She mentioned the other day she really didnt want to divorce unless they had to for financial/assistance reasons so she could maintain his medical (veteran) benefits. I think that's what opened my eyes. What happened to for better or worse? I know without a doubt if it were reversed my Dad would do everything in his power to take care of her, that is just who he is.
My fiance and I have not tied the knot yet due to working around Covid, but he recently had ankle surgery and I have cared for him the past few months because it is what you do when you are committed to someone. It is nice to have his sons come around to help, but we never relied on that. I took it as my responsibility.
That is a major step!
Yes it will make it easier on you but it will also be easier for him. AND when SM visits she may realize that he really has a pretty good deal going on she may also decide that AL is not such a bad thing.
As long as he is willing then there is no reason for you to feel guilty.
He will have more help, he will have more activities, more people to communicate with.
Do make sure that you have all the paperwork you need.
Have you talked to an Elder Care Attorney?
The fact that he is married IF something were to happen legally his wife is "next of kin" and she is the one that would have to make decisions and if she is away it might be difficult. (this is more important if he can not communicate his wishes at the time, not so much if he is able to make his own decisions)
The fact that he is married IF something were to happen legally his wife is "next of kin" and she is the one that would have to make decisions and if she is away it might be difficult. (this is more important if he can not communicate his wishes at the time, not so much if he is able to make his own decisions)"
The question about seeing EC atty is good, but should be expanded. They can help set up POAs such that OP can be the decision maker. THIS would be better, because wifey isn't always around. With POA assigned, it doesn't matter that he has a spouse - if he appoints OP, then SHE will be the decision maker.
You will still be your father's caregiver by advocating for him and making sure his care needs are met. Look at it this way, your father will have others to associate with and daily with activities available. He will have staff round the clock available to him. His meals will be prepared, housekeeping, laundry. And (if like my father) when he falls, someone will be there - they will take efforts to cut the risk of falls, but they can't promise he won't fall. With him in AL you will have less to worry about.
I don't know if any of us at times know if we're making the right decisions. You research, list pros and cons and make the best decision you can. You don't have to do this alone, your father has evidently express his willingness to go; be inclusive with your father and his wife (if she's interest), and your fiance.
Allow your Dad to go to an AL if he can afford it. Then you can just enjoy visits and getting him things he needs. He will have socialization. He is giving you a gift, except it. He will continue to get worse and the caregiving harder. Enjoy the time u have together.
She lives in Assisted Living since 2014 and now in Memory Care since 2019. She was walking with a wheeled walker beginning in 2015 and the falls started then; she took 40 of them while in AL! FORTY. She developed severe vertigo due to the neuropathy advancing and having poor hearing, poor vision and no feeling in her feet, giving her no idea of where she was in space. That's what led to all those falls. She also has very bad balance issues and 'falls backwards'......IDK if your dad does that too? It contributes greatly to the falls.
She never went to the hospital for ANY of the falls, believe it or not, but wound up with broken sternum bones and ribs as a result of them. When she was hospitalized in 2019 with pneumonia, a CT scan was done & the doc noticed those broken bones in different stages of healing and brought it up to me. That's when I knew she DID hurt herself with some of the falls, and that's why she was asking for Icy Hot patches 24/7 from the staff!
Anyway, back to 2019 & the hospital. The doctor spoke some wise words at that stay. He said at some point, with neuropathy, the patient MUST go into a wheelchair for their own safety. That's when my mother, at 92, went into a wheelchair full time and the walker was retired for good. That's when AL refused to take her back & she went into their Memory Care building. Since June of 2019, and while in a wheelchair, she's taken an additional 32 falls.
I truly do not understand why you are feeling depressed & guilty about helping your dad get settled into Assisted Living. Especially since HE is the one who brought it up. The truth of the matter is that nobody is going to be able to prevent him from falling, not you, God or anyone else. Neuropathy is a terrible thing and IT will cause him to continue to fall, thanks to balance issues, nerve damage and loss of feeling in his feet/legs. He is best off in AL where help is available 24/7 and teams of people can pick him up if/when he does fall and he can be examined by a nurse to determine if he needs to go to the ER or not. That is a BETTER situation for a man with a chronic condition than living alone with an absentee WIFE and a daughter who's overwhelmed and unqualified to help him 24/7. Your only goal here should be your father's best quality of care and his safety, leaving emotion OUT of the equation. You can go visit him every day at the AL if you want to and assume the role of his daughter again instead of his stressed out and scared to death caregiver, you know?
From one daughter to another, I get it. I know how you feel and what you are going thru. And I can tell you the BEST thing I've EVER done was to place my parents in Assisted Living back in 2014. Dad had neuropathy too but it was actually a brain tumor exacerbating it, unbeknownst to us, and the staff at AL treated him like gold. Cared for him right to the end of his life beautifully, just as they are for my mother now. Don't attach a stigma to AL; realize it's dad's best bet for 24/7 care available to him and help with showers and getting dressed as his condition continues to deteriorate.
Wishing you the best of luck and NO GUILT on your part!
JKL0916, my comment affects falls. Have you considered a rollator instead of a walker? There's no comparison in terms of stability. A rollator is 4 wheeled, has adjustable hand bars, and may come with a seat for sitting down when someone needs a rest. It also can carry items.
Is your father getting rehab for his broken arm? If so, one thing you can do is meet with his therapists and get copies of the exercises they're giving him. He can continue to do them at home.
You might also ask the therapists if he's using the bicycle type foot and arm machine to strengthen his arms. If so, you can buy a cheaper one for him to use at home and continue to build up his strength.
https://www.neurorehabdirectory.com/rehab-products/pedal-exerciser/
I certainly hope your dad and stepmother kept their finances separate, because clearly your stepmother has no intention of honoring her marriage vows. If her health precludes her from helping, that's one thing, but if she simply would rather go off to her house when your dad needs her the most, then she might just as well stay gone.
Focus on Dad and getting him into a good assisted living situation. In the end, both of you will be happier, because he'll have good care and a way to socialize with others who won't take off as soon as times get tough.
I had brought that up to him and he said he would consider divorce if necessary, but I am not so sure he would actually do it. She gets around very well, but does have some medical issues and having his insurance has been very beneficial to her.
Of course, that is another issue entirely and does upset me now that she is only her to care for him when its convenient for her.
To be honest, guilt belongs to felons. It is reserved for someone who understands that they have done GREAT HARM by their own FREE WILL and have taken GREAT JOY in doing harm. I doubt that is a category you can squeeze into.
The word you want is GRIEF. It is another word entirely. Grief acknowledges that you are a human being, not a saint, and that you are attempting to do the best you can while still reserving some deserved life for you yourself, and for your primary family.
You are extraordinarily lucky. Your father, like my brother, recognizes that his going to ALF will greatly relieve you. That is the TRUTH. That is the truth that many families have to explain to the best of their ability to an unwilling LO. Your father is like my brother who told me "It isn't what I would have chosen for the end of my life, but the people are wonderful and treat me well and I am adjusting (he DID) and I look upon it much like my being a young man who had to join the army. I didn't much like it, but I made the best of it.
How much of life is just RECOGNITION of the facts of the case, and adapting to the best of our ability.
I wish you so much luck and I exhort you to watch your labeling of yourself. You are trying hard. You see here on forum over and over again the dire results of not recognizing the facts, of labeling ourselves wanting when we are honestly trying. Please be gentle with yourself.
There is no path in life that we have a guarantee of it being "the right path". I wish you luck.