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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?

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Imho, firstly, you are a STELLAR caregiver. But please understand that no one person is expected to do it all without respite, albeit even small breaks else you burn out. Prayers, dear jkl0916.
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The stress you are feeling is from trying to do it all. Caregiving can be a full time job and then some.

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.
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I, too, am an only child with parents who were still living in their own home until 2 months ago. My dad has moderate dementia and my mom was doing well physically and they both were pretty mobile. I was trying to care for them 250 miles away by going every 2-3 weeks for several days, cooking and freezing meals for them, taking them to appointments, being there for hospital stays, etc. It was wearing me out traveling back and forth, always being on call to drop everything if something went wrong and constantly worrying about them. We also have 4 grown children of our own with families and of course we’re wanting to be available to them also.
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.
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I too am an only child and when my mother decided to move to an AL facility I assisted her in finding the right one. She has resided in AL for 5 years and has been content there. Our visits are based on doing fun things like going to lunch, playing cards, having dinners at my house. Your current situation is unfair to you and to your father. What will happen when his wife isn’t able to help with his care? Things can happen quickly regardless of how capable she is now. Your life is barely manageable so you need to simplify and help your father make this move for your peace of mind and his so that he no longer feels like a burden.
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Hello. I hope this helps.

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.
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Can't really add to the excellent advice you've already received, except to say, if you are making decisions based on what your dad wants to do, and out of love for him, then your decisions are the correct ones. Sending you a big hug cuz your love for your dad shines through your messages.
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I used to feel guilty about my Mother in Memory Care, but she has Alzheimer's and needs care 24/7. At Memory Care, my mother is safe, warm, fed, so all her needs are taken care of. No more guilt !!
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"...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..." So she wants his veteran benefits just not to take care of him and not if it means being away from her house longer than she wants. Got it. Sounds like she's got a cushy setup for herself. What else does she feel entitled to in the event of his death?

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?
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jkl0916 Apr 2021
Yes, we will be selling his home. I own the home jointly with him. I also have the durable power of attorney which covers medical and financial and he has a living will also.
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.
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Regarding the veterans benefits. Unless he is a vet disabled in service the benefits are pretty much non existent for assisted living/nursing home. If the vet is at a poverty level there is something called aid and assistance but if he has a house to sell, he likely won’t qualify from a net worth PPO unit of view. It’s all very complicated. My dad was in WWII and so he gets some health benefits He has very very low income (just social security and some dividends) but he had too much in the bank from the sale of his home to qualify for anything. So unless you’ve talked to a social worker at the VA, and filled out the application, don’t assume he’ll get help with this cost.
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Your story reminds me of my dads situation only your dad is married and mine had a 10+ year part time live in girlfriend who they both called his wife. They didn’t marry for financial reasons but when dad got too sick she stepped away. Sort of. She’s his phone friend now. Anyway all this happened because they were both too stubborn to go into an assisted living place together. She needs to be in one but is refusing so dad refused too. This left both families (hers and ours) completely lost as to what to do. Had they moved to assisted living in their 80’s they would have made friends and ENJOYED the activities. However they dilly dallied and he moved in and out with her and with his kids in various cycles until FINALLY we got him to assisted living. Age 93, now with moderate dementia. He lasted 3 weeks. It was no where near the supervision he actually needed. They popped in and out of his apartment asking if he needed anything, helping him dress or whatever. But he was not adjusting and eating well and ultimately fell and got a hematoma. I thought he could do it. I really did. But what he really needed was a nursing home or memory care where they monitor more than just meds. They monitor his meals and they make sure he gets into the activities and to the dining room etc. If your dad isn’t very social and organized, he’ll just end up sitting in a room in assisted living. It’s for people who still have enough organizational skills to problem solve their day and just need help with meds, showers, dressing. Anyway, the advice here to make sure that he’s good enough to be in assisted living is so crucial. The staff will “evaluate “ him but they will take anyone and promise more than they deliver. Also, the earlier )younger) you get him in there the better he’ll adjust. Don’t feel guilty. This will allow you to enjoy your dad and give you a life too.
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jkl0916 Apr 2021
Thank you. It is sad that they are in a committed relationship, married or not and one chooses to step away when it is too much. My Dad's wife has some minor health concerns, but otherwise is in very good physical shape. At times, she seems to get around better than I do. She is able to help him pretty well, but told him she feels like she is mothering him too much at times...Very aggravating because my Dad was a very active person, always taking care of others and it has been very hard on him loosing that independence.
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.
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I say go with the assisted living (if that level of care is enough for his medical issues). You will need to find out if s'mom's visits will be allowed at the facility when she comes to town. I would ask dad if he is ready to sell his own house to use toward his new living arrangement - or - if he already has the finances to pay for that sort of facility.

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.
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jkl0916 Apr 2021
My Dad said he was ready to sell his home to move to AL. I think the only hesitation he is having is hoping she will stay to care for him and I know that is not going to happen. She was here during his recent fall and has stayed for 2 weeks to help. Was going to stay until end of May, but is now leaving next week for an "appt". My fiance and I do have a home and have his children living with us. Until we get things figured out, I will be moving to his home when she leaves to care for him with the assistance of caregivers. It is already causing me alot of stress and anxiety. On top of everything my fiance is recovering from ankle surgery and hobbling around in a boot and I will be leaving him to take on everything at our home.
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.
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Er.

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.
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I think if your dad wants to go into assisted living let him.
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.
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jkl0916 Apr 2021
I guess that has been another issue, because until recently I felt like it was more my responsibility since I have been his daughter for 48 years and she has been his wife for 10. But lately, I am starting to see it differently.
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.
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Again look at his willingness to move into AL as a gift to you. He's allowing you to live out your life as it should be lived. You won't be abandoning him.
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lealonnie1 Apr 2021
Amen. It's such a blessing when the elders agree to go into managed care and save US from 24/7 care.
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WOW...dad is agreeing to transition to AL.
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)
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disgustedtoo Apr 2021
"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 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.
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If your father is willing to move to AL go for it. Do it together and include your Finance in shopping for a good fit for your father. Do not feel guilt which is self imposed. I doubt very many of us feel we adequately take care of our LOs. There is nothing wrong with your father making it easier on you, he's allowing you to live your life. My parents decided to to move into Independent living, progressed to AL because of dad's fall and dad moved into SNF shortly before his death. I will be eternally grateful to them for the decision they made. Mom is still in AL, they neither one wanted my brother or I to take care of them day to day - they wanted us to lead our own lives.

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.
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I guess I am looking at this a different way. Caring for your Dad is his wife's responsibility. For better or worse, sickness or health. Not saying you can't help but she should be there. So you have no reason to feel guilty. She does.

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.
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Your feelings are normal but, as Alva pointed out, you have no reason to feel guilty. Focus on your grief. You are grieving for the man who was once upon a time your strong father. Find him the best assisted living within his means and place him there as soon as possible. You will still be his advocate and his loving, caring daughter just not his caregiver. His needs are only going to increase.
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jkl, let me start by saying I am an only child too, and my mother is 94 with severe neuropathy in her legs/feet which has been an ongoing issue for as long as I can remember.

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!
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cweissp Apr 2021
My father didn't have neuropathy, but he evidently had strokes that no one ever saw in the balance portion of his brain, which explained his falls. You are right no one can guarantee he won't fall. While in IL he cracked some ribs by falling off a step stool and another time compression fracture in his spine. In AL he banged his head when trying to pick up silverware someone had dropped and he didn't want anyone to fall because of it. Other falls in AL resulted in scrapes and bruises. Early morning and late evening calls always made me cringe.
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Alva, good insights on the difference between guilt and grief.   MJ, also good insights, gently and compassionately offered.

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/
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Your dad is a wonderful man for bringing up the subject first, because he UNDERSTANDS the burden his care places on you. You should be absolved of guilt right then and there, because he's made that decision.

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.
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jkl0916 Apr 2021
My Dad and stepmom have always kept their finances separate and there have never been any issues. However there is one potential issue that may arise. My Dad is a Veteran, so have been looking into benefits that may be available to him and being married may decrease the amounts he is entitled to since they are both not in need of care right now.
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.
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I always like to suggest we reexamine our interpretation of the word GUILT because words themselves do matter.
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.
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NYDaughterInLaw Apr 2021
Outstanding answer!
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