...it seems like a different issue every day at the ALF. If you've been keeping up, you already know that I've been REALLY kicking myself for moving Dad to an ALF closer to where I live. As nice as they are, they just CAN'T handle Dad's needs.
I just can't bring myself to place Dad in a NH that we can afford. We struggle (correction I STRUGGLE) to pay for the ALF now, and my research proved that Memory Care would be $1,000 more than he's paying at any of the private pay facilities, and the government facilities are not up to my standards (snobbish, I know).
So, I've decided, much to my dismay, to "bring him home". Once my apartment lease is up, I am going to move into a ranch style home and between Adult Day Care (A DIFFERENT ONE THAN HE WAS GOING TO BEFORE) and VA Home Health Aides and a trusted friend of mine with long-term CNA experience that would help out a couple days a week, this would be MUCH more economical and we may be able to avoid some of the "mishaps" Dad keeps having due to him needing a higher level of care.
He's starting to forget how to operate his motorized scooter, and he refuses to use the pull cord, so today he tried to walk out into the hall to find someone to help him with his scooter and HE FELL!!!!!! He says he's OK, but of course I'm having the Hospice nurse to pay him a visit. I'm stuck at work until 5 and can't check on him until then, but my nerves are in knots.
Here's the clincher... I still have three months on my apartment lease. I've gone back and forth in my brain on whether I should break my lease (to the tune of $1,800) and put a security deposit down on a home ($1,100) to go ahead and make this transition but that's a LOT of money. Strangely, I feel guilty about "taking" half of this expense from the money Dad told me not to touch. It seems wasteful.
My initial plan was to work extra at the second job so I can save up some money to pay movers, etc. and put a little extra back because I'm going to HAVE to quit the second job to be with Dad, but I worry about Dad CONSTANTLY. It affects EVERYTHING I do, and my thought is that if I wait, I can put together a solid transition plan.
But when stuff like this happens, I just want to say HE** with it and move him now. Any advice?
My mom was on Medicaid and in a wonderful skilled nursing facility. It was clean, the staff really cared and she was well taken care of. Dad sounds pretty stubborn, and I would feel better if he were in a facility with constant medical supervision. But all that’s up to you as long as you realize he will continue to decline and require more and more care.
If you would be using Dad’s money to benefit him, is that so wrong? My mom scrimped and saved money to leave me an inheritance but it all went for her care. It was unavoidable. If Dad has this money, I would use it for his care instead of strapping myself financially and using my own funds. Don’t act in haste. Even if the place he’s at isn’t quite up to your standards, he will be ok until you have all your transition plans made.
You are moving to a house that your Dad has never seen, so he will become so very confused. And with his memory loss, he will never learn the floor plan of the new place. This move could very easily push Dad's dementia into the next stage, and unfortunately Adult Day Care may say they cannot accept Dad due to his dementia progress.
There is a reason your Dad is in Assisted Living, there is a village inside the facility to help him. Not one person at home. I know you plan to have friends help out, but they will want to be paid, it's only fair.
Eventually it will cost MORE than what you were paying for Dad's Assisted Living. And if you hire caregivers that are not from an Agency, you would need to purchase "workman's comp" insurance just in case a caregiver gets hurt on the job.
If you feel you really have to move Dad, get him into a VA home. Even if the building looks run down, Dad could still get the best of care. Plus he would be around other veterans that he can form friendships with. Think about this. I think your Dad would like to be around other Vets :)
The Medicare / Medicaid facilities are DISGUSTING. You think I feel guilty now? I would NEVER be able to live with myself if I placed Dad there. One VA facility is under investigation by the state, and the other is next door to the hospital that sent Dad home due a couple of years ago with an anti-nausea medicine for repeated vomitting. Thank GOD I took him to the ER after I left there. They admitted him for emergency surgery for an incarcerated hernia.
I have NO faith in that place. That's definitely emotional / snobbish. I'm sure I'll regret my decision, but the choices available SUCK!!!
I would literally visit the man daily if I put him in a DUMP like that and my stress level would increase even more. I know that.
By the way... I would definitely pay my friend legitimately (take out taxes, etc.) to make sure everything is above board. Paying her $18/ hour (well more than average CNA rate) would still be cheaper than ALF.
He's going to get out, fall frequently, need to be taken to doctors, podiatrists, dentist's and the like.
His dementia is going to advance, inexorably. Moving will probably increase his confusion. He's been your abuser in the past, Tiny. Have you forgotten that day at the bank? It's going to get ugly.
Not sure why you aren't getting an eldercare attorney who is familiar with VA and Medicaid to figure out how to get him either qualified for Medicaid by letting go of the VA support OR finding an adequate VA or VA contracted home that suits his needs and your nose ( I understand that, Tiny, I really do. There is no excuse for smells at nursing homes. None).
I think moving your Dad into your home would be a mistake also.
You are not going to get ANY rest.
Dad will likely become more confused than he became during the last move.
Have you considered seeing and Elder Care Attorney, using Dads money, and let them help you put together a reasonable, permanent care plan together that is best for your Dad long term?
Having your Dad under your roof may seem like your best idea at the moment but without 24 hr home Care to support that option you are going to miss ALOT of work.
There will be falls at home day and night whether you are shadowing his every move or not. ER trips.
In spite of your best efforts and your devotion to your Dad you are setting yourself up for that meltdown/breakdown you referenced, I think in your other thread.
When our parents reach the point where your Dad is now, the best option for all involved is for the parent to be in a facility. There are problems and frustrations when our parents are in a facility but at this point if you move your Dad home you are looking at problems and frustrations multiplied by 100.
... and sad...
...and ANGRY!!!!
I think the most awful thoughts when I get here. I don't want to be in this position at all.
I'm NOT going to break the lease...
I'm NOT going to break the lease...
I'm NOT going to break the lease...
I'm NOT going to break the lease...
I'm NOT going to break the lease...
I'm NOT going to break the lease...
I'm going to look at other places (snobby attitude and all)
If I end up putting dad in a dump, I think I WILL have an emotional breakdown from the guilt....
Thankfully, there's still time
Not to be a (friendly) nag, but don't you have a health issue you are working on? What is your blood pressure, blood sugar, etc., like these days, with all this stress?
Tiny, you are a very frustrating poster for some of us. Like me. Like Jeanne. We offer you constructive suggestions. Therapy ( no, not my thing). Lawyer ( can't afford it, but there's money dad set aside!).
You don't want to solve this issue Tiny. You want to continue to punish yourself to prove that you can damage yourself beyond repair. You want to do that because Dad told you you weren't good enough. And you believe him.
You'll show him!!
Best of luck, Tiny. Not answering you any longer.
I don't believe it's wrong to use his money for his benefit. As far as the lease goes, I would have a hard time not breaking it.
I know I am the odd one here, but I am glad you are trying to work it out to bring him home with you.
May God give you strength and courage and peace.
I understand the stress.
Hang in there.
You mention adult day care, and the friend CNA, but didn't mention nights. I wouldn't overlook that. From this forum I've gotten the impression that nighttime issues often are the breaking point for home caregivers.
Now for the ranch house rental you are looking at, the owner won't want that house to sit vacant for months, unless there is a tenant in place and their lease is up lets say the end of June. Then that could work for the rental side of this situation. Unless the owner plans to re-carpet and paint, and do some other updating.
Plus with a house you will be paying for all utilities, not like the apartment where you pay only for electricity and phone service. You will also be responsible for the maintenance of the yard unless you hire someone to mow and do the landscaping. You will be responsible for cleaning the gutters unless the owner does that chore.
Lot of logistical stuff happening here to also take into account.
You don't have to worry about my responding again. I've been constructive and been constructive, but I recognize when that is not really what is wanted.
I think I've said it before, but sometimes there's no 'good' answer, but just the best one from those you're given. From my own experience, your dad will continue to decline, and if you don't have snafu's with help showing up every single time they're needed/scheduled, that will be a miracle. So, where would that leave you with your job, if you can't leave him, but there isn't anyone? Then there's the house -- has it been completely modified for his mobility issues, with the probability that they'll get worse?
I'll tell you that Dad's MC was quite upscale, but he had never lived in a place so nice all his life. Truth be told, he would probably have been more comfy in something I wouldn't have liked. The updated furnishings and amenities didn't mean diddly to him. (So you might take a second look at those SNF's. And perhaps you could even ask for references from families with loved ones there.
Lastly, if all parameters are in place to use his money, I agree with others who've said you should. I do not regret one iota using Dad's money for him. And I feel the same about my future. Why should I make sacrifices when he has money in the bank? And why should my children make sacrifices if I have money in the bank? I've already told mine, when the time comes, place me somewhere, check up on my care frequently and visit me as often as you can.
Much love to you -- I so admire your heart.
So it’s right for you to make all sacrifices while he is taken care of 24/7 on your dime?
Did you forget his Day Care days a few months back where you drove yourself bonkers over oxygen tanks every time he went there?
Remember the transportation issues to get him there on time?
Was there one day things went smoothly?
One day?
And when he is home alone because you won’t be there, how are you going to work not knowing if he turned the stove on, turned it off, and doesn’t climb on top of a chair to get something in the pantry & suffers a fall that may be his demise?
Realistically your father is declining in health. His level of need is very close to NH care.
If you move him again, that will facilitate worsening dementia.
Why would you put him in such a vulnerable spot?
Is he still in Hospice? I know you said they had decreased their visits - did they dc him?
Your father will need SNF care in less than a year, I would say in my experience. The VA sounds like a great place if only because he’d be with his military family. I bet you he wouldn’t mind the place, and it’s you with the misgivings.
Seriously it’s the wrong decision to take him in your home.
A lot of us didn’t have much of a choice placing their parents in NH. I didn’t and she hated it too.
Hard decisions have to be made. But you count in this equation too, and if your father cared enough he would make this much easier on you. That rainy day is here - it’s alright to spend his money on him. Does he know the sacrifices you make for him every day? From what you’ve said about him, he was a “father” in name only. He’a still manipulating you, even when his life is almost done, it’s still all about him. You are providing him care at an ALF or a nursing home so you are not abandoning him. He has no respect for your time (Saturday morning greasy spoon breakfast) after you’ve worked 60 hrs a week. Jeopardizing your job. Jeopardizing your health too.
What happens when your $18/hr aid calls in sick, wants a vacation, and plain old gets tired of taking care of your father?
Why would you want to remove him from 24/7 observation?
With no disrespect to you, how do you really think your plan will work?
Let him go, Tiny. Leave him be where he is. Detach! You obsess over him.
Please see a therapist to help yourself figure out why you like being treated like a dishrag. Just because they are our parents doesn’t mean they are good people. Your dad has not been good to you or your poor mother. You are providing all he needs and more.
There are stairs in a ranch home; how will he do those?
I’m not on board with your plan. I hope that you can see why others are frustrated with you as you don’t heed a word anyone suggests. So what advice do you need because you aren’t getting much validation here.
The sad thing is, it's to HIS DETRIMENT. Moving him and taking away his 7/24 care, to make YOU feel better about yourself, is totally selfish.
Do you tell everyone and anyone who'll listen, that nothing is up to your standards and that you won't feel better unless you physically & literally take over his care yourself? Even moving your entire home, willing to loose 2k if needed to do so? Do you add that you're paying for his care yourself too? Even saying he has money but you won't use it?
"I must show the world, I must prove to myself, I'm not a discardable piece of crap, because dad made me feel that way."
T, if you must take on this role, don't jeopardize his care for your emotional needs. I'm not trying to be a witch, but your emotional problems are glaring and most ppl here see it.
Therapy would help, good luck.
It took me about 2 years with her in a home the whole while for me to realize my teeth grinding and nightmares had returned, along with about 30 lbs. It was, and is, not good for me to visit her.
Tiny: Boundaries by Townsend and Cloud is probably at your library, on their web books site, or at your local Walmart. It's such a good book.
Isn't it amazing how the developing mind works?!
I was very fat as a child. Got teased constantly. When I was around ten I had high school girls spit soda and chewed up potato chips in my face, I was stuck with a pin to see if I pop. And to this day that Carol King song....l feel the earth move under my feet.....makes me cringe, because kids would sing it when I walked by, like I was so fat I made the earth shake when I walked! It was horrible.
I was programed to believe I was lower then trash. Never good enough, and no where near the worth of skinny girls.
Anyway my mom, who was tiny and slim, never wanted me around when she was having coffee with her girlfriends or gathered with neighbors outside. She always said "go play."
However the other girls mom's let them stay right there with the adults. Do you know what my child mind subconsciously internalized as truth? That my mom was embarrassed of me cause I was fat. Not skinny like the other girls that could be w/their mom's in a group. I did not know I thought this.
But at 16 I quit high school, ( I couldn't take the torment)
and went to cosmetology school. I lost all the weight, about 150lbs, got as beautiful as I possibly could and went about trying to get mom's love. And of course the world's validation.
Years later in therapy I found out about how my mom's actions led me to believe she was embarrassed of me. When I asked her about it her answer floored me!
She said, "We we're always talking about our husbands hitting us, cheating, drinking and so on. I never wanted you to hear a negative thing about your dad."
Wow she was protecting me!
I mentioned the other girls mom's letting them be there, and she said, she guessed their mom's didn't care how they felt about their dad's.
God I love that lady. 👩👧
T, I'm sorry we derailed your thread. But we have issues too, and we're not afraid to share them. Hugz
If not, then why do you keep coming here and be told the same thing, which you just don't do?
Time to fish or cut bait.
However.
Let us return, please, to the root of the matter.
You are not the author of your father's situation.
Repeat after me:
I am not responsible for my father's choices.
I am not responsible for my father's choices.
I am not responsible for my father's choices.
Forget "snobbish." Forget "fussy."
You will advocate for the best care available to your father.
The best care for him is not the option that runs you into the ground.
I think I said before that if you bring him into your home I will never speak to you again. I take it back. If you bring him into your home I will never let you hear the end of it.
Be PRACTICAL, woman!!! He needs 24/7 care from a trained, qualified team. Meet his needs, work on matching his care to your standards. Stop trying to make the world what it ought to be.
I think it would help to first look at your response to his crises. You get really stressed out (which is normal) when he has a mishap, but that panic response might be causing you to jump to a decision that is probably not going be healthy for either of you in the long term. It might be better to learn how to calm down more quickly so that you can focus on solving the problem at hand rather than alleviating the anxiety-feeling (speaking as someone who has the same tendencies.)
If you bring him home, he will fall, and get into other predicaments. But you are going to be the one who has to get up and get him up off the floor. It is really hard for anyone, let alone if you are literally "Tiny", to pull a frail elderly person out from between the toilet and tub.
Your dad sounds like he will not be able to stay home alone. The VA caregivers we had were contracted from local agencies. (If you are doing home-based primary care, that's different, I think.) We were limited to a few agencies and the hours they had available, usually between 10am-3pm. You might still have to pay for someone out of pocket to come in at 8am or whenever you need to go to work. Make sure your dad can afford to pay for enough hours of caregiving and also that you will be ok with having strangers in the house when you aren't there.
It's also possible that when your dad gets to your place, he will become more demanding. Is he going to drive you crazy?
Let's say you want to go for a run, or go shopping. Are you going to be ok with tracking down a caregiver to come sit with your dad before you leave?
Focus on your dad's safety not his happiness. You have done everything you can to make your dad happy but owing to his temperament and his declining health, he is not going to be happy.
Regarding your guilt over the move, a lot of older people have very gradual decline then will take a sharp dip, then it will plateau or be very gradual again. It sounds like your dad took a sharp dip around the time he had the day care incident. I don't think moving him caused his decline. Just know if he does end up needing to move to a NH, you already did everything you could to keep him out of one as long as possible.
Also just my opinion - I don't think you will like having your dad in the VA NH from your description of it. He probably does need that level of care, but many NHs are short-staffed and staff are doing the minimum they can because there just isn't enough time to tend to everyone. It is probably going to be a grosser, more frustrating version of the AL. In your place, I think I would try to keep your dad a little longer in the AL and do more research. (For example, in our area there was at least one facility that would have been a nice option for my grandpa, but it was run by the nuns and had not come up on when we were initially looking for facilities. We only heard about it from chatting with a social worker.)
Can you dad afford to pay the CNA friend to stop by the AL facility occasionally just to check up on things? Maybe you could use some of the money it would cost to break your lease to put toward her visits instead? It might help alleviate some of the pressure you are under right now.
Finally you have had a lot of loss in your life and I’m sure you carry a lot of sadness with you. This process with your dad, which has been a lot of work (in every regard) on your part, has to bring up a lot of feelings about the past as well as the future since you are facing a loss with him. I would take some of the the time and energy you are dedicating to him and start trying to build something for yourself so that you have something that makes you feel proud or fulfilled — something you have to look forward to — as he declines. You run the risk of damaging your own health and exhausting yourself. If you have something to look forward to — be it a project at work, relationships, hobby, pet, garden, whatever — you will have a path waiting to step onto when things do change.
You have a lot going for you. This process is hard for everyone, harder when you don't have a family support system. Don't be too hard on yourself. You have already done so much for your dad.
Been there, done that
DON'T DO IT!!
Mom is back in a Memory facility and I have some of my sanity back.
You are HOG-TIED by guilt. Get over it. Forget what you think you are expected to do and provide. He needs a roof over his head, 3 square meals a day, a comfortable bed, medicine given on time and hopefully others he can converse with. Period!
You know, as we get older, our urine takes on a stronger odor (less fluids, etc). Damn difficult to find a place that has a bunch of incontinent seniors sitting in diapers to smell flower fresh. That's the way it is.
Now on to what's important.
Do their bedridden patients get turned every 2 hours?
Are fluids being offered every 2 hours?
Are there nurse/aide checks every 2hours?
Is pain being adequately managed?
Are there adequate hand rails, lighting, security cameras, etc. for their safety?
What is the skin integrity of each patient (pressure sores, groin rash from urine or stool)?
Is their oral hygiene acceptable (teeth brushed twice a day, checking for loose teeth or bad breath)?
What is the nurse and aide staffing patient ratio?
What are the attitudes of staff with long term patients?
I don't give a rat's a** about how "pretty" a place looks, lovely paint or wall paper or modern furniture....what you should be looking for is THE QUALITY OF CARE.
I don't even care that it has a smell. My mother's diapers STUNK. I'm a nurse, I encouraged frequent fluids, did exquisite peri care every 2-3 hours, changed diapers even when dry but yet her groin and urine stunk. (No, no UTI.) My whole house stunk of it. No amount of bleach, Pinesol or Lysol spray took it away. She was ALWAYS supervisized and assisted in the bathroom yet my home smelled like a nursing home. Get over it....that's just the way it is.
She now lives in an old building with fresh paint, sits on old but clean furniture and wears sweats (stained with food after eating, even with a bib).
Mother (the queen) would have rather "died" than to be in a place like that (pre-Alzheimer's). BUT THE CARE IS GOOD. Their doctor is also very attentive.
That's what counts.
I will agree you need some therapy. A problem this severe is very difficult to wade through alone. I did and I'm so glad I went. Find a way to go.
People here want to help you but you've got to open your eyes to what they are saying.
Good luck to you both.
Tiny, I really do feel sorry for you as I think that for whatever reasons, you've been guilted into feeling the need to care for your father, in your home, but even though you've been cautioned enough on the issues, you still feel compelled to do it.
You did say his money would be a "huge help right now." No shame in it. And since it will go to you anyway once he passes. You are struggling to pay for his needs out of pocket now.
H*ll we raised 3 kids and where never able to save enough for a down payment on a house. However, we did spend money on plenty of "wants" besides needs.
Anyway, it's just a thought. I know you're well aware dad will only decline in all areas and foget about the cash at some point. So if I'm totally off base, I apologise. It just makes no common sense to most of us, why you'd refuse to use his money for his care.
Mom came to live with me Nov of 2014. In the 20 months she was with me, she declined on a monthly basis. After a year it was getting to me. She could use a toilet but couldn't clean herself up. She couldn't shower without help. I had someone come in just to shower her because at 5ft tall and 66 yrs old, I didn't have the strength and worried about her falling and me being alone. The second year my DD suggested Daycare. They picked Mom up and dropped her off. They showered her for me. Husband and I could get out, together. Before, he had to stay home while I ran errands. I was trying to sell her house to get Money for an AL. The house wasn't selling and she had about a years funds so I placed her in an AL five minutes away hoping the house would sell. Unlike my house where she had to stay in a downstairs room because I live in a split level, she had the whole building to walk around and people to talk to. No, it wasn't perfect and I had my complaints. I actually would ask my daughter what I should complain about. Yes, Mom continued to decline. Yes, she fell a few times. But ALs are not set up for constant care, they are just what they are called "Assisted". Their staff is smaller than LTC and can't be with a resident every moment. Well, the money ran out and I had to place Mom in a Long term care facility. She private paid for 2 months, which used up the rest of her money. I had filed for Medicaid in May and it started in July for her care. Again, nothing is perfect. You have to adjust to the situation. Because I didn't like the combinations the CNAs put on Mom, I hung her tops and slacks together with a bra. Seems the CNAs never looked in her drawers for bras. At neither facility did they ever comb her hair right. So I carried a brush and hairspray with me. I was a note writer but tried not to write too many. My brother said I was my own worst enemy. Meaning, I worried too much about the little things. But my Mom was losing her mind and I wanted her to at least look nice. The staff was very good to Mom. Because she was a fall risk, she was put in a wheelchair but a very comfortable one she could skoot around in. They had activities all the time. She was clean and no smells. On hindsight, my DD and I both thought that maybe she should have skipped the AL. All her needs were met. I had to buy nothing. Her toiletries were provided. Her diapers were provided. The residents clothes looked so clean, I even allowed them to do her laundry. All I had to do was visit.
I think you maybe trying to controll a situation that you will never be able to controll. First realize, that as a person living in an AL or NH you are not a patient but a resident and the facility is now your home. As such, no one can make a resident do what they don't want to. Even a Dementia patient who is not able to make informed decisions. I think you have had some good complaints especially the way his oxygen was handled. But Dad is going to get worse. Can you handle that?
Maybe for you, bringing him home would be a good thing. I would start looking for an affordable place but not break your lease. Three months is not that long. If you continue to work he will need someone there while you are at work or Daycare again. He seemed to enjoy that. I would keep my job for the social part of it. Be aware though, you will not have a life out of work. You will need some back up to watch Dad while you shop and run errands or want to socialize. Be ready for helping him shower and the incontinence where you have to do the cleaning up. Are you ready to do these things for a man. They become children that you can't reason with. Can you be the adult and him the child? Can you handle him if he gets violent? Make a pro and con list. If the pros outweigh the cons, then move him back with you. First, get your ducks in a row. Take time off from work to get moved in and him adjusted. This may work out better for you. But take it slow or your going to overwhelm yourself.
When it comes to this group. We each have had our own experiences. People ask for help or direction and we give them our insights and point them in the right direction. A number of members have taken care of loved ones from beginning to end so have the experience the rest of us don't have. You take out of this group what you want and leave the rest. In my opinion, maybe it would be best for you to have Dad with you so you are better able to control his care. Maybe in the long run it will simplify things for you. All you can do is try, if it doesn't work then go to plan B. Please tell us how things work out. It may help another member in helping to make the same decision. Good Luck.