Elder-caregivers
Related: About this forumtrying to help/deal with, my almost 99 YO father...
I am frustrated and angry. He is in pretty good health, but he is taking care of his Parkinson's and demented wife and it's wearing him out. He's hurt his back lifting her.
I have researched resources, like getting respite care and he gets annoyed and refuses. He'd like me to help, but she is much too large for me to even attempt to lend an arm. I did once and she just about pulled me over. Not to mention, I am not qualified for such a task.
The exhaustion is wearing him out. He fell himself the other day. He fell on his face and needed stitches on his nose and forehead. He drove himself to the hospital, which I don't think was a wise choice to do. He was bleeding and he could have had an accident, fortunately, he didn't.
The other day he asked me to sit with his wife while he shopped for groceries. I drove up to his place, not a long drive, but an 18 mile round trip in hills and winding roads. After waiting around I asked him when he was going shopping, when he then decided he wanted to take his wife, which means getting a woman who can't walk, down a flight of stairs and into a car. I refused to go with him on that trip, which would have been a 3 hour ordeal in addition to my then added trip to my home.
He complained about how tired he is and I told him (again)he didn't have to do it he could get respite care. He then threw some things across the room and told me to get out.....I did. Actually, I was afraid of him because he was very abusive me as a child and he used to beat and he had "that look" in his eyes. He still is abusive verbally and emotionally. He tells the neighbors how proud he is of me and how much he loves me. To me it seems quite different.
I am looking for options, considering Adult Protective Services, which was advised to me by a senior facility.
His wife has children, but only one female, who is sick herself and not able to be a lot of help. The males are not much help at all.
I think he is also in some stage of dementia, and since his fall, it's accelerated. Neighbors think he's a great guy, but, of course, they don't see the side I see. He prides himself for being a "Superman". Advice is welcome.
I am a petite 74 year old female in pretty good health, but in no way capable of dealing with their physical needs.
MFM008
(20,007 posts)program? I don't know if your state has one, its to provide home health to seniors and disabled.
Questions and Answers on the COPES Program
Authored By: Columbia Legal Services
5102EN - COPES is a program that pays for personal care and other services for people in their own homes. COPES also pays for care in adult family homes, adult residential care facilities, and assisted living facilities. It is designed to help people who, without COPES, would need to be in nursing homes.
See if its in your state.
Alameda
(1,895 posts)the major problem is getting him to accept any outside help. He seems to be paranoid of "outsiders"
He is being unreasonable and unappreciative of what help I or my stepsister can offer.
Response to Alameda (Reply #3)
Maru Kitteh This message was self-deleted by its author.
marybourg
(13,193 posts)I'm on it. My suggestion was see if that state had similar help, perhaps under another name.
Perhaps some advice even....
marybourg
(13,193 posts)If they need more help than that, you need a social worker from a local non-profit agency to tell you what's available and appropriate. If you don't know of such an agency, start with a search for your nearest city's Area Agency On Aging.
Do not allow yourself to become their caregiver; it's beyond your (and most people's) abilities and not in keeping with their needs.
If your father won't cooperate, you may have to steel yourself to the fact that eventually either he or she will need to go to the hospital and more authoritative people will try to place them appropriately. Both dementia and Parkinson's have an inexorable downward course. You may just have to wait it out.
It is amazing, though, that a nearly 99 year old man can still do what he is doing.
Alameda
(1,895 posts)He has to see everything, he is afraid of someone stealing or making errors in his finances. As for shopping. I once watched him spend an hour picking a prime rib. Picky picky picky.
marybourg
(13,193 posts)There is no magic answer if they need help, but won't accept anything less than making you their on demand caregiver.
Try to find out what's available for them - possibly a Medicaid program like the Washington State one - but it sounds like he won't cooperate with anyone. Paranoia is common in dementia and extremely difficult to deal with.
Do not allow guilt to trip you up. You could wind up in worse shape than them! Good luck!
Rorey
(8,513 posts)Especially about not allowing the guilt to get the best of her.
Doodley
(10,450 posts)go to the store. He must be as strong as an ox.
Alameda
(1,895 posts)and amazing, really. However, in his being strong as an ox, he thinks I am too. He is also stubborn as an ox.
He was a Marine in the Pacific, Iwo Jima and the Occupation Forces of Japan. He has that Marine mentality, but now is failing and very angry over it.
He never was a cuddly guy, he's highly critical, cruelly so. He never misses a chance to make a snide remark, particularly regarding my ageing and life style. He's mean.
Doodley
(10,450 posts)to pay themselves for assisted living or a retirement home?
Alameda
(1,895 posts)I wonder if he will not accept advice or help from anyone other than me, is there any way other than waiting until tragedy happens, to "convince" him to accept help? Do I have to call APS, are there other resources. He is a Vet, do they have a way to deal with this?
Doodley
(10,450 posts)might qualify. If he is reliant on you, you have some leverage. You should find out what is available - through Medicare, and also retirement or assisted living facilities. Then sit down and show them. My mother-in-law is in a great retirement home that includes her own private apartment, all food, 24 hour on-site emergency support, transport, all kinds of social activities, etc, for about the same as when she was paying rent, and can upgrade to assisted living on another floor if needed. We never thought she would go there, but when we showed her, she fell in love with the place.
Alameda
(1,895 posts)and defensive at the mention of respite care. He threw things across the room when trying to discuss it. I asked him if he/they had anything like medic alert. He showed me some rinky dink thing that you press a button and a very annoying siren goes off, but it only works in the home. There is nothing that calls outside. When I mentioned that he got angry and threw it across the room and told me to get out.
ginnyinWI
(17,276 posts)My old dad was very angry during his last few years because he was losing his stamina. He was another "tough guy" who wanted to take care of himself, etc.
He alienated me and others. It's hard to keep interacting with someone who is that verbally abusive--I know. He had been taking care of himself and my mom, and when he died rather suddenly, care for our mom fell to me and my brothers, and she lived 5 1/2 years beyond him with health troubles and mild dementia.
I would say: tell him you will do his shopping and banking whenever he wishes, but don't let yourself be drawn into doing more than you think you can handle. Be available but set reasonable limits. There are shopping services available in some areas, and Amazon has some food you can order.
If he is against any agency helping out, a bit of deception might work (I've heard it work with some seniors): enlist someone yourself, and then tell your dad that he is a "friend" who offered to help out. Someone who could lift the mom, or help with the household chores, or whatever. Once they know the person and trust them, it wouldn't be so bad when they find out who they work for.
My parents are gone now, but my mother in law is 92 and stubbornly refuses to move out of her little house. Fortunately she has four sons and a daughter who come regularly to make her home into an "assisted living" arrangement. But she should be around people her own age, because she is lonely. At some point moving is going to become a necessity.
It's tough, and it seems like once you learn to do this, your task is over. I'm glad to be able to offer a little bit of the insight I've gained.
Rorey
(8,513 posts)I concluded there is no good answer. We had an elderly relative who took care of her husband who had dementia and also couldn't walk. She wouldn't allow anyone but us to help out, and we all lived out of state. Realistically, none of us had the skills required to care properly for him anyway. Then she got cancer and caring for him became impossible. She STILL wouldn't let us hire someone to come in to help. She didn't want anyone in her home. She didn't trust anyone but family. There was no choice but for him to go to a nursing home.
You've given him good options. If he doesn't want to take them then there's not much you can do other than forcing him to get help he doesn't want. My only advice for you would be to try not to feel guilty or be goaded into doing what you shouldn't be doing.
tirebiter
(2,588 posts)but you may need to check out convalescent hospitals. They're not necessarily happy places. Falls at his age can be terminal. All men see themselves as supermen. I do but I'm unique unlike anyone else although it is kind of weird that I can't lift an engine like I used to be able to do
Rorey
(8,513 posts)And I guess you'd have to be Superman to bite tires.
Doodley
(10,450 posts)would be the way forward.
gwheezie
(3,580 posts)He still lives home with my mom,they're 90. He has end stage heart failure & dementia. It's taken 6 months & several falls along with my mom having a psychotic episode from lack of sleep to convince them to allow help at home. I convinced them after the last fall, my mom couldn't get him up & hurt herself trying, she had to call 911 & of course they wanted to take him to a hospital which agitated him because he didn't want to go, so I told him if he lets these people help him he won't have to go to a hospital again. Otherwise if he falls mom would have to call 911 again. Also I said mom could fall & what would he do?
All this got arranged via his doctor who has been wonderful, she has a caseworker in her office who arranged everything. Medicare is covering it.
My dad is vaguely upset about hospice but I told him it just means medicare will pay, he's being being able to make decisions, while he's still can walk a few steps he is at the failure to thrive decline where he's barely eating. So he's got a hospital bed, wheelchair, commode & a home health aide. He has his emergency kit for if he's uncomfortable.
This is all new to them, just the past 2 weeks. My brother is staying with them temporarily. We've had to lie to both of them. My dad is failing, we told mom she can always take him out of hospice. He's not going to get better but they aren't ready to hear that.
Doodley
(10,450 posts)Alameda
(1,895 posts)particularly under such difficult situation yourself. May your way be easy.
gwheezie
(3,580 posts)The fear of both of them falling & laying there for days had us all so worried. We had to wait until my mom had her psychotic episode & get her help before she would agree to getting help for my dad.
ginnyinWI
(17,276 posts)My mom died of congestive heart failure a year ago. Sounds like your dad: more and more trouble walking, not having any appetite, not wanting to do anything. She lost about 30 lbs in her last six months.
And I think her dementia was vascular, too--when she'd go into the hospital and they'd get all her numbers better, she was much more like her old self mentally. It wasn't like Alzheimer's because she knew people and could talk and remember the distant past very well. Just had short term memory loss and trouble figuring out daily chores. (there are 80+ different kinds of dementia.)
But she couldn't stay in the hospital permanently. Her decline lasted about six months, and I wish I had known how long (or how short) this period would be. If I had known, we wouldn't have moved her to a memory care unit, but just kept her in the assisted living home she was more used to and added extra help. Moving threw her for a loop and she never felt right in the new place. Besides, she was in and out of the hospital every few weeks. Probably should have had hospice care much earlier.
And here I was, taking her to the dentist and the eye doctor, as if those things were really necessary!
During her last hospitalization they recommended hospice and we moved her there to be treated in the facility. She was no longer able to walk or even stand without help and was completely incontinent. She went in on a Friday and died early the next Wednesday. She thought she was still in a hospital.
58Sunliner
(4,983 posts)You might try Social Services and see if they have any ideas. It is hard to help someone who is not open to changes. May not be much that you can do except hire an assistant. Does the wife have an assisted lift? I have actually seen them at thrift stores that have a relationship with a medical center to sell used goods. Something may be available in your area. You could check with purchasing at a hospital as to what they do with retired equipment. He seems like he may resent the input. He is also stressed and over-whelmed. I would think a doctor could prescribe an assisted lift. It also sounds like she needs more care than he can provide.Sounds like they could also benefit from a nurse visiting to help them with a plan for coping. That is where Social Services might be of assistance.
Snackshack
(2,541 posts)That is a tough situation to be in. I am very familiar with it. You have my respect.
Having cared for my mom during the last two yrs of her life and after she passed at 56 yrs old in 2004 I transitioned right into caring for my grandmother until she passed in 2015 she was 88. Being a caregiver to elderly family members is a tough thing to do alone.
Check with the state to see what programs they might have to help with support. Towards the end of my grandmothers life I simply could not provide the care/attention she needed on my own and remain employed. She had contracted MRSA and had to have a leg removed so she needed around the clock attention. Luckily here in Az there was a state program called ABIL (Az Bridge to Independent Living) that provided a nurse during the day for a few hours while I was at work. So the nurse had the day shift and I had the night shift basically. At first my grandmother was not interested in the program at all and was mad that I could not do it all...that was where Adult Protective Services came in very handy. They told her she needed to do the program or she would have to go to an assisted living place. Check with Adult Protective Services to see what your state might have.
Another very good resource is Hospice. They are not only support of end of life situations. Call them and find out what they might have.
As I said hang in there and take it one day...sometimes one minute at a time and don't forget about you. It is very easy to lose sight of yourself when you have take on so much for others, it can get overwhelming quickly. There is only so much you can do and control. Don't worry about things you can do nothing about. Take care of your self. I wish you the very best. 🙂
Freethinker65
(11,147 posts)I wish he had been in hospice sooner. It probably saved my Mom's life. My Mom thought she could do it all but could no longer take care of him and herself. He had been in a private pay care facility after recuperating from a fall but it was too expensive to stay indefinitely, so they moved in with my sister (across the country) who already had a full time stressful job. My mom and sister's physical and mental health took a beating from trying to care for my dad 24/7 themselves. It took over a year for them to realize they needed extra help. Hospice provided palliative care and took care of his morning routine, including showers and shaves, changing of bedding, and recording of vital signs. It was a lifesaver and gave my mom time to care for herself. She and my sister started to eat better and get some relaxation and sleep. This still was not enough for my Mom, so eventually she paid for some bedtime routine care out of pocket. My dad was well cared for at 'home' until the end.
tirebiter
(2,588 posts)It's a necessary thing and sooner not later. After going through my and my wife's parents leaving the mortal coil I can give no greater advice to a friend or a stranger. It won't be at all comfortable. I'd say appeal to your dad's marine sensibilities on doing the right thing to get the job done. Mucho Gusto.
Alameda
(1,895 posts)He gave it to a cousin who lives in another state.
PoindexterOglethorpe
(26,730 posts)It's obvious to the most casual observer that he needs help, but he's refusing it. You are doing what you can to help out, but you are (to coin a phrase) no spring chicken yourself and can only help so much.
Others have made some good suggestions. Adult Protective Services may be your best option.
People of his generation tend to be incredibly stubborn about accepting help, especially about anything connected to these aging issues. I think it's in large part because thirty or so years ago when their parents got old, the options were mostly awful, and too many of them went into dreadful nursing homes, something people like your dad is desperate to avoid.
For those of us somewhat younger (and I'm 68 myself), we've been through or are going through what you've described, and we are determined to avoid it ourselves. Meanwhile, people like yourself are still dealing with extremely elderly parents, and there's no good solution.
In such circumstances I would often advise someone to tell a person (your dad in this case) that you won't help out until he acknowledges that he needs help. That's so easy to say, and of course it doesn't address the very real family dynamics at work here. All you can do is to keep on pushing him to accept appropriate help.
I can only offer sympathy and compassion and hope it all works out in the end.
cpamomfromtexas
(1,346 posts)Alameda
(1,895 posts)It's good to see I'm not alone with this problem, although I would not want to wish this on anyone. It seems like the only thing to do for now is wait it out.
When I've called him, he has been utterly unreceptive. I have done research on all sorts of devices that could help him. In doing the research,I was amazed at the helpful devices available and now share them with you,, perhaps there will be something of use to some here, or you know others who could benefit from my research.
Unfortunatly, my father only scoffed and complained and said none ot them would be of use to him. I guess what he wants is a slave
.....and yes, he has the money to purchase or rent these items.
Smart lift Vest
If you are attempting to lift and transfer a loved one from the floor to a sitting position with the Smart Life Vest, please follow these steps. Depending on the severity of the situation, there are two procedures, one being for a single caregiver, and the other being for two caretakers. Do not attempt to lift a fallen loved one by yourself if the task calls for two people.
http://www.fallrecovery.com/how-it-works.html
Mangar Camel Lifting Cushion - How To Use It
Wheelchair stair climber...here is one video. there are quite a few that can climb stairs
Beasy transfer system
http://ma
an ingenious device to transfer people from bed to wheelchair, into a car or what ever
patient transfer sheets are a valuable tool for moving patients. There are many different types, this is not an endorsement of this particular one, but rather a way to let people who may not know about this tool
Alameda
(1,895 posts)in October last year. He finally accepted hospice, but complained about it all the time.
Rather than go into details, I'll just say, it was ugly.
Now he's alone and a PITA....still very strong...but mourning. I don't know how long he will go on.
The stress of dealing with him is taxing. I don't do much, go up to visit him once a week, call him every night. He asked me why I don't talk much the other day. It doesn't matter what I say, he will find something to complain about, so I shut down. I feel like he's testing me to see how much I'll take.
Don't you just love those people who ask why you don't move in with your elderly parent?
Quite frankly, I'm afraid if I did he might shoot me, as he has shotguns, and might think I'm an intruder in the middle of the night.
Even then, he didn't invite me to stay with him anyway. Now he's living in his 3 bedroom 3 bathroom home with a downstairs in-law unite alone.
narnian60
(3,510 posts)Reading your past posts. Can relate. Just wanted to let you know you are still not alone. My mom (who has some dementia) has been in assisted living since April 2018 after having to get Adult Protective services involved. I (with no help from family) have worked so hard to keep her healthy and "happy" since she's been there with only now seeing the light at the end of the tunnel. I wish I could feel relieved, but there always seems that there is always one more hurdle in the way. Hope you are surviving this challenge, my friend.
Trueblue Texan
(2,951 posts)and provide him with resources and access to services he doesn't know about. It's ridiculous that he expects you and himself to bear this burden