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My father has severe lymphedema with other health issues. He has not slept in his bed for over 2 years and has no interest in returning. He DOES want to resolve or make his issues better but wants me to solve the problem. He claims he is unable to put on compression socks on his own, so wants me to lotion, as well as put the socks on and off daily. Additionally, he would like to use the compression pump but wants my help getting it on and off. The swelling causes pain which he associates with having them elevated which doesn't help. He does not like to be physically uncomfortable for any reason. The weakness can make it difficult for him to rise from the toilet (he is 6 foot 2 inches and 250 lbs). He will yell for me to come help whenever he doesn't feel he can rise but says the use of a rail will make it difficult for him to maneuver when self-cleaning.


In addition to caring for both of my parents, I run a full-time business from my home. While I did agree to care for him, I can not get him to see that he needs to take responsibility for some of his basic care, or lack of participation. It feels as if he would much rather have me take care of the discomfort than try to be self-sufficient. The stress and physicality of pulling around on a large man are taking their toll.



Any advice or experience welcome

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Dear Kachrisman,

While I can't speak to the mental aspect, I can say for sure that donning & removing compression hose can be best be a two-person job, depending of course on the strength & abilities of the wearer. And if they aren't feeling well on top of that, well...that makes it even harder.

I did this for my mom, & they were even hard for me until I found two things that were a game changer:
1. A donning device
2. Wearing rubber gloves

Here's a link to purchase the donning device on Amazon by Ezy As. They come in sizes. We used Med as that's all I had to chose from back then. Mom was a 7.5 shoe; you may need large for your dad.

https://www.amazon.com/s?k=ezy-as&language=en_US&adgrpid=1236950899017195&hvadid=77309597671249&hvbmt=be&hvdev=c&hvlocphy=78930&hvnetw=s&hvqmt=e&hvtargid=kwd-77309679898779%3Aloc-190&hydadcr=20172_13429195&tag=txtstdbgdt-20&ref=pd_sl_9o4amafcs3_e

Video showing how to use: https://www.youtube.com/watch?v=wHYlwOgzq-c
But way easier if you use rubber gloves. You can "roll" them w/ your heels of your hands or grasp better.

I was shocked how the ppl at her (eventual) facility had never heard of nor seen these.

Hoping it can bless you & others.
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kachrisman: Contact the Council on Aging in your area. There they should have on staff an elder case worker and also a social worker. Start there for help with your father.
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Your dad probably does need help with the treatment. My dad went to a doctor for this that taught me to lotion and but the socks on followed by velcro wraps. The compression pump is useless. To get the swelling down you need gauze to put by the skin followed by elastic wraps in the beginning. Then the doctors use a velcro wrap that gets cut down as the swelling subsides. Generally the wraps can stay on two - three nights before changing. Once the leg swelling is down you use socks that come with velcro closures. To keep the swelling down. We took the wraps off once a week to sleep. Otherwise they stayed on 24/7. If you do not help him he will get open sores and it will get worse. It does not take that long to lotion the legs and change the wraps. My dad had them on his feet and lower leg. No way he could of gotten the correct compression if he did it himself
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Grandma1954 July 30, 2023 4:15 pm.
He apparently does not want to resolve the issues he is having.
He seems very happy having you at his beck and call.
There are tools that can make putting on compression socks easier.
Get a riser seat for the toilet to make it easier for him to get off. Even if you have an ADA height toilet the riser seat will make it easier. (my Husband was 6 foot 4 and 275)
If your dad is capable of doing things that you are helping him with then he has no incentive to do more for himself.
And if your dad is cognizant you tell him that it is getting more difficult to care for him and that if he can not do these things for himself then you are going to have to start looking for other options.
those could be
Hiring a caregiver
Placing him in Assisted Living.
You should also explain to your mom that she needs to help out a bit more with dad. If mom is not physically or mentally able to do things to help then placing both of them in AL might be the way to get them both the help they need.
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Please confer with his PCP, and get referrals for home health services to assist him. This in turn will help you to a point. Also having the home health services can provide more input to him about his care and self care and, can offer some support for you. Also have a boundaries talk with him, set what you can will or will not do and, advise him that if he cannot help himself more, then it is time for his PCP to give an updated
" level of care needs" and look at facility placement options that can provide 24/7 care for him. Sounds harsh, but , necessary for your survival.
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Not always associated with PTSD, but is Dad a veteran? If so, they will have resources that may not have been considered. This situation doesn't sound like it is sustainable long term. In addition to everything you are looking into right now, please work with an eldercare specialist to plan for their long term care.
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If you can, take him to a NH to spend a little time; that may be the incentive he needs to try to do better.

Cover909
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This is taking a toll on you.
And it will continue and progress until you change the scenario 'somehow.'

There comes a point when you need to stop doing all you are doing.

He sounds like he is 'used to you helping and expects that you will continue to help. In other words, he doesn't 'have to' do anything for himself. Plus, he is (likely) depressed and doesn't care.

If he realizes that you will NOT continue 'helping' as you are, he may change - or he may not.

At some point, you will need to
(1) get caregiver help coming into your home.
(2) let him know he is responsible for his own health care (if he is able to understand this cognitively).
(3) Move him out of the house, as things progress and you cannot manage his care.
(4) Figure out his finances. He may need to go to a nursing home to quality for MediCal.

The bottom line is that 'the more you (continue to) do, the more he will expect you to do.

You are between an emotional rock and a hard place.
These decisions are not easy.
However, the quality of YOUR own health and well-being is important and needs to be your priority, 'too' -

"Try" for a win-win by talking to him, telling him what he needs to do or changes that you will need to make. If he doesn't step up and meet you 'half way,' make other arrangements. If you are not already his POA and/or in charge of his finances / banking / get all that in order ASAP. He needs to pay for a caregiver (if possible). If he doesn't have the money, see what he qualifies for in terms of nursing homes.

Gena / Touch Matters
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I feel your pain. I took care of my parents too. I’m so sorry that you are dealing with this situation.

Just read the responses to your post. I agree with having the doctor order home health. My mom saw significant improvement when she did home health.

I saw where you said that your parents couldn’t afford entering an assisted living facility. Can they afford to hire help from an agency or perhaps a private caregiver?

Have you been in contact with Council on Aging in your area? If your father qualifies, they will provide assistance for him. Help is hired through an agency and they work four hour shifts.

Wishing you all the best as you continue to care for your parents.
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We really need AI robots to take care of all the sh__ problems.
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kachrisman Jul 24, 2023
true!
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Yes, where is Mom in all this. There are compression socks that zipper. My nephew uses them because he is too heavy to bend completely over.

Tell Dad, if he is not going to help himself, then eventually its a NH for him. Because you are not capable of caring for him after he becomes dead weight. I suggest a commode in the bathroom he uses.

The bar on the back should be removable, take it off. A new commode should come with a bucket and splash guard. Place the commode over the toilet. (You can remove the toilet seat because the commode has one) Place the splash guard where the bucket goes and make sure the bottom goes down inside the toilet bowl a couple of inches. The legs can be adjusted. Now Dad has arms he can lift himself up with and hold himself up with. 

I agree, get an order for PT to come in and evaluate him. I just read exercise is good for this. So he needs to get up and move.
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kachrisman Jul 24, 2023
Thank you for the advice.
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Pain can make one not want to do a lot of things. Seems this is how your dad feels.
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Way2tired writes: "Are you thinking it’s reached the level where it is too difficult to have your parents living with you and would consider assisted living ?"

This. How/why did you agree to care for him? If you have siblings, why did you alone agree? What does your spouse say? You could hurt yourself lifting him up from the toilet, especially if you are much smaller.

What is the financial situation of your parents? Are you their POA/HCPOA?

If your father doesn't do more things for himself, what's the next plan? Is the plan for them to live with you until they (or you!) die?
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kachrisman Jul 24, 2023
I dont believe we are at that level yet.

My parents do not have the resources to afford assisted living. I do have a sibling but he is developmentally disabled.

My spouse is supportive of helping them. They have resided in our home for several years. The physical care has only gotten bad recently.

My mother isnt in a great health position herself.
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1. His attitude will only get worse. And he’ll only have more and more health issues.
2. Please, if he has the money, hire someone else to do all that. You’ll only get more angry, and you’re right to be angry. You’re being used. And of course, what a surprise, you’re a girl. So many women’s lives ruined and exploited.
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ventingisback Jul 22, 2023
Maybe I got that wrong. Maybe you’re a man. The rest I wrote is valid anyway. If you’re a man, I hope your wife isn’t being forced to be a servant too.
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I agree with others , PT, OT coming to the home. Get his doctor to order it . Also has Dad had a psych eval for depression ?

Do you have an aide come to help with showering ?
Does Mom need help too ?

Is it possible for you and your spouse to get some respite ? Get away . Either have help stay with your parents or place your parents in a respite facility while you are away ( or if you just staycation at home even , do day trips ) ?

Are you thinking it’s reached the level where it is too difficult to have your parents living with you and would consider assisted living ?

You have to find what options will work best for the situation .
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You run a full-time business and a full-time assisted living home by the sounds..
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anonymous1732518 Jul 22, 2023
🙂
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He needs Therapy. Ask his doctor to order it with focus on the lotion, the socks and the bathroom. See if you can also have home health come in to help you manage their care.
Medicare covers these benefits.
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kachrisman Jul 24, 2023
He is in therapy for PTSD. He is taking meds for anxiety but isnt willing to do the emotional work.
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Why would he if you are doing it for him? Can you work everywhere else like at a shared workspace environment?
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kachrisman Jul 24, 2023
very true
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