I appreciate any comments from experience/knowledge.
My husband’s hip is bone-on-bone, without the usual ball and socket joint, and causes extreme pain if he moves too much.
At 81 years old, he suffers from neglecting the deteriorated hip for too long. His muscles have atrophied and dystrophy in the legs, where they are needed most.
Now, before surgery, the surgeon wants my husband to get stronger and to stand. This seems to be a prerequisite for a hip operation.
My husband and I were separated years ago, but we stayed in regular contact by phone (separate states), but I was unfamiliar with his deteriorating condition. I had tried to talk him into having hip surgery when he had more mobility. Unfortunately, persuasion was useless then.
I brought him to my home, from the clutches of a poorly managed nursing home, which looked like they priming patients for the undertaker. I brought him to my state to have a hip surgery. I had initially expected he would be operated on. But the first surgeon said no. There was drop foot (two actually), swollen legs (not now), weakness, and lack of mobility. The second surgeon said my husband must strengthen himself and stand and take a few steps. Apparently, without that, the surgery would be a failure.
He can’t do that. He is frail and has great difficulty standing without assistance. He is deteriorating mentally. He seems to get frailer monthly. It has been almost 5-months since we started this process.
It is difficult between us, as he has to live with me in the living room floor, where he sleeps in an electric bed (not chair!). A nurse attends him almost every day, unless there is a problem for her to travel. I do so much to give him food and fluids and attend to some basic needs.
His mental and physical abilities are weak. The surgeon is not giving him a clearly defined objective to achieve. If standing and walking are the objectives, they are impossible. My husband is very weak and is in pain. It is a catch-22 situation.
Any suggestions?
I hope that you can find comfort in our responses, and that you are able to make decisions that work out as best they can.
Best wishes going forward.
Thank you so much. I applied some of your suggestions in resolving my conflicts. It helped so much to have your response and was really remarkable to get some objective comments.
If he makes it to surgery (and is inquiring into a nursing home), I will update the status.
Janine
"...how is he financially? Are you (or is anyone) his financial PoA?"
Yes I am. I am considering selling his home, as he is running out of liquidity, being a self-payer, but with his protests in the background.
"Has he ever had a cognitive/memory test?" No never had one. He was much brighter two years ago (was in Mensa). But this is observable for me, as he has difficulty creating a milestone roadmap of his objectives.
"...have you discussed what kind of anesthesia ..." Not yet but we intend to do so.
Thank you.
Thank you very much to everyone who responded. Your answers are insightful and help to set real expectations. Some answers touched in the issues that are on my mind with accuracy.
I was not able to answer all of the questions but have them as "food for thought."
To answer MidKid58,
Thank you for discussing your mother's hip surgery.
Goddatter,
Thank you for your comments, about your own surgeries. Yes, the pain is excruciating and he is much older than you were.
GardenArtist,
"achieve strength w/o standing" This is not possible, as far as I know.
Your experience shows that a patient PT helped your mother. This might be a strategy to use a better PT.
"drop foot" suggestion about more research is another area to delve into.
You make many excellent suggestions, if I only had the time and energy. I have asked Dennis to find a PT today, one that can assess him and give us a clear assessment.
Thank you.
ElizabethY,
Thank you for your succinct points and comments.
lealonnie1,
Your comments was close to the ideas I have had: 'send him back'.
" ...anesthesia used was an epidural; I chose Propofol ..." This is such insight and definitely important information! Thank you for that.
Also many of your other comments are thoughts that I have had. We have not officially divorced (not really married either), but I initiated the procedure. We got along better before he moved in (what stress for both!). Thank you again for discussing some subjects that are on my mind.
LoopyLoo,
"... surgery will be a lost cause." this is our concern. No we are not yet divorced but I started the process (n kids). He agree to do so, and he gave me POA over his assets. No I did not expect that he would be living with me for the past months. It is not what I want. It is very stressful and unpleasant, as I watch his deterioration. I suggested he goes to a nursing home (not the one he came from), and to have PT there. He did have some friends but the ones he had actually cleaned out some of his liquidity. We managed to retrieve it from them. But no other family or friends can assist. It's really too big a job. Maybe his sister would take him in. I never thought about that. Might be worth a try and ask.
Thank you for your insightful comments and questions.
Grandma1954,
He tries to stand and really makes an effort but is very weak. He places his weight in his arms on the walker or back of the wheelchair handles. He only tries to stand on one foot (the better side).
"If it truly is impossible for him to obtain the objective to stand and walk then you accept the fact that he will be wheelchair dependent and he remains with you, living in your living room (if you do not follow through with the ultimatum)."
No, I will not live this way for the rest of his life. I am twenty five years younger and have a lot of living to do.
Thank you.
Geaton777,
"...how is he financially? Are you (or is anyone) his financial PoA?"
Yes I am. I am considering selling his home, as he is running out of liquidity, being a self-payer, but with his protests in the background.
"Has he ever had a cognitive/memory test?" No never had one. He was much brighter two years ago (was in Mensa). But this is observable for me, as he has difficulty creating a milestone roadmap of his objectives.
"...have you discussed what kind of anesthesia ..." Not yet but we intend to do so.
Thank you.
She had the hip replaced. The pain was gone, but she refused to do PT after the PT came to her--so she deteriorated very rapidly to walking with a walker, when she had been using a cane. Then she tried to talk her dr into doing her OTHER hip, which, while not in great shape, was not bad. The surgeon refused and the 2nd 'opinion' also refused and said she'd be wheelchair ridden, as she can barely walk.
Wow, was she mad! But it was the right thing. She doesn't really 'get' that once she's in a wheelchair, she will also be moving to a NH. I don't know what she thinks...she does love a good surgery!
Drs have the responsibility to "first, do no harm" and if a surgery is optional or not in the best interest of the patient--they'll refuse.
I would suggest you call some orthopedics who specialize in this, explain (probably to their assistants who take the calls) the situation and ask for advice. My impression from my own experience - not medical advice! - is they will be reluctant to do such surgery with such a poor likely outcome, but they may have other options to help alleviate his pain.
1. Deteriorated muscle strength. I can attest to that, although I'm somewhat younger at 77 than your husband. I discovered this after spending too much time watching newscasts and worrying about the pandemic as well as major political issues. So I started walking back and forth, up and down, just in the house (as it was winter then), and doing other exercises. I could gradually feel more strength developing.
The question is whether your husband could achieve strength w/o standing, and I know it can, but there needs to be determination and the ability to persevere. At some point, that's just lost, especially since he has other challenges.
Another experience: my mother broke her leg, the male therapist in rehab said she refused to stand and nothing more could be done. My father, sister (psych nurse) and I requested a staff meeting, discussed the issue, the male therapist went to another facility, and Mom got a very patient and compassionate therapist who helped increase her leg strength. She was transported to PT by wheelchair, and eventually was able to stand and walk.
The bone on bone issue is not something I've experienced, and that may be such a negative factor that it does in fact prevent your husband from walking.
2. If he's able to regain strength through either in facility (best option) or at home to justify surgery, he could have a much better chance. I'm not a medical person, can't read x-rays, and am thinking only in terms of personal motivation to overcome obstacles.
3, Drop foot concerns me. I have limited experience with that, only when my sister's cancer metastasized to her spine and affected her ability to walk. It was extremely frustrating (and painful to see - she used to be a runner) to get used to and wear the metal contraption she was given to assist her in walking. That lack of ability changes one's perception of mobility so much that it can be devastating.
I would try to find out more about how drop foot will not only affect his existing weakness, but whether or not it would be such a negative factor that it would mitigate against surgery.
4. What recommendations did the surgeons make to get to the point of tolerating surgery, or do you think that they just felt it was too risky with a low likelihood of success?
5. If the surgeons don't have confidence in being able to walk after strengthening, then you do have the issue of increased immobility and being out of home care. I do agree that this is something to consider, and as he is already declining, it may in fact be time to consider at least palliative if not hospice care.
6. Depression, limited mobility, and accompanying issues can be so discouraging that it's too much of a challenge to face. Do you think he's at this point?
My father and I both recognized when he reached this level, and I was so grateful that we both could see it and plan for the near term future so that he wasn't challenged with activity which wouldn't yield any positive results.
7. I agree that your husband should address life affairs documents and get his estate (if he has one) addressed. If he has any assets, now is the time to ensure that they'll be distributed according to his wishes.
Are there any relatives involved who can help with decision making and other issues until a resolution is found?
It's really sad to read of this kind of situation; I wish I could think of more positive aspects, but he does face some severe challenges.
Your experience shows that a patient PT helped your mother. This might be a strategy to use a better PT.
"drop foot" suggestion about more research is another area to delve into.
You make many excellent suggestions, if I only had the time and energy. I have asked Dennis to find a PT today, one that can assess him and give us a clear assessment.
Thank you.
The patient needs to meet the following requirements with the help of the PT shortly after surgery:
-sit up in bed
-get up out of bed safely
-walk short distances with the help of a walker or crutches.
Your husband is not going to be a candidate if he can't do that pre-surgery-he's too debilitated to rehab. He's not going to be able to build new muscle after surgery so he can stand, it needs to be there beforehand. Since there's a current low probability of success , it would be unethical of the surgeon to put your husband through surgery and rehab. Orthopedic surgeons have guidelines to follow and their success rates are generally tracked by their facility's Quality department and reported to CMS.
It might be better to ask the surgeon for a consult with a Palliative Care team member so that there can be a thorough discussion of his care goals, aimed to keep him as close to pain free as possible. Palliative care is not hospice, palliative care assumes that treatments will be initiated with the goal of improving health.
When I had hip surgery, the anesthesia used was an epidural; I chose Propofol to get knocked out but I could have chosen to stay awake for the 90 minute procedure. Choosing to forego general anesthesia made for a much easier time of things in general. But I still had to get thru the recovery phase ie: walking every day afterward, etc.
It sounds like your ex is in no condition for hip replacement, and you've taken on way more than you should be handling now, considering you're divorced. It's obvious that 'standing and walking' are objectives for him to achieve BEFORE surgery will even be considered and since he's not attempting to achieve such a thing, sending him back to long term care would be your best bet. Please don't set yourself on fire to keep HIM warm. If he truly wants help, then let him show YOU that he's willing to stand up and work for it. Nothing worth having in life comes easy.
Best of luck
" ...anesthesia used was an epidural; I chose Propofol ..." This is such insight and definitely important information! Thank you for that.
Also many of your other comments are thoughts that I have had. We have not officially divorced (not really married either), but I initiated the procedure. We got along better before he moved in (what stress for both!). Thank you again for discussing some subjects that are on my mind.
I'm guessing you never officially divorced? It seems odd to refer to him as "my husband" if you've been separated for years, divorced or not. You went to another state to get him out of the nursing home and brought him home to you? That doesn't sound like something a divorced couple would do. I can understand still being friends and keeping in touch, but really you're not separated from him anymore. And I'm just guessing, but it sounds like you may not have ever separated from him emotionally. I don't know what led to the separation (and don't need to!) but it sounds like you have some guilt over it, like you're trying to make it up to him somehow?
I'm assuming you didn't have kids together. Did he have any friends or activities before? If there are family and friends around but don't want anything to do with him, that's a red flag.
Regardless of why you split up, part of it had to be you couldn't live in the same house together anymore. Being his caretaker will put you back where you were before you separated and stir up the problems you had before. Is this what you truly want?
"... surgery will be a lost cause." this is our concern. No we are not yet divorced but I started the process (n kids). He agree to do so, and he gave me POA over his assets. No I did not expect that he would be living with me for the past months. It is not what I want. It is very stressful and unpleasant, as I watch his deterioration. I suggested he goes to a nursing home (not the one he came from), and to have PT there. He did have some friends but the ones he had actually cleaned out some of his liquidity. We managed to retrieve it from them. But no other family or friends can assist. It's really too big a job. Maybe his sister would take him in. I never thought about that. Might be worth a try and ask.
Thank you for your insightful comments and questions.
If he is not willing to do what he needs to do or the surgery cannot be done, you will need to place him. Medicaid will pay for his care if he has no money. There are pain specialist who will help him manage the pain.
AFO (ankle foot orthotic) for the drop foot might help.
I, at this point would give him an ultimatum (and I hate those) ..
He either actively participates in rehab so he can have surgery or he leaves and returns to a Skilled Nursing Facility.
YOU can not do this for him.
If it truly is impossible for him to obtain the objective to stand and walk then you accept the fact that he will be wheelchair dependent and he remains with you, living in your living room (if you do not follow through with the ultimatum).
With you and if he can afford it a nurse or other caregiver to care for him 24/7
He tries to stand and really makes an effort but is very weak. He places his weight in his arms on the walker or back of the wheelchair handles. He only tries to stand on one foot (the better side).
"If it truly is impossible for him to obtain the objective to stand and walk then you accept the fact that he will be wheelchair dependent and he remains with you, living in your living room (if you do not follow through with the ultimatum)."
No, I will not live this way for the rest of his life. I am twenty five years younger and have a lot of living to do.
Thank you.
Even if he does get approved for surgery, have you discussed what kind of anesthesia they will using on him? Please be aware that the anesthesia they use on "younger" people is no friend to the elderly and sometimes causes very delayed cognitive recovery, and sometimes it greatly speeds up dementia-like symptoms. I personally know someone who had this happen and he was only in his 70's after shoulder surgery. Anesthesiologists can use a different type (or mix) that may be better for him so be sure to confirm this.
Then, if he makes it past the surgery hurdle, there is a high risk of post-op site infection and UTIs, He will be in rehab after (and I hope you're not considering doing it at your home). And finally he must be willing and able to do the actual PT or he will be wasting everyone's time and energy. He already seems to rely on well-meaning enablers and co-dependent LOs to move him along in life.
If he is not currently taking something to address the pain, this may be the reason he is not working on standing. He has to consult with a pain specialist if this hasn't already happened.
Has he ever had a cognitive/memory test? I would certainly do this pre-op to see where he's at (and to measure progress if he does have the surgery). Finally, does he have all his legal ducks in a row? Are you his assigned DPoA? Does he have a Living Will? Are you his Medical Representative? Did he create a Last Will? He really needs to take care of this right away if it is pending.
You asked, "What if the surgeon will not operate?" He will need long-term care from either a facility or in-home from people. It will mean 24/7 care, and may even require medically-trained caregivers. This costs money -- how is he financially? Are you (or is anyone) his financial PoA? Who will be able and willing to manage all aspects of his life moving forward, because this is where it would eventually go. How old are you? What's your health currently like? Caregiving is hard on body, mind. I wish you much clarity and wisdom as you make decisions.