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Welcome to the forum! Wow, did your husband have his FIRST ever hospitalization at 86 years old?! That's amazing! What happened that you did not feel any support at the hospital? I myself always felt the need to be there with my parents when they were hospitalized, as their advocate, because it's hard to navigate the system alone. My daughter is an RN and has helped my husband with numerous health issues over the past couple of years and I can honestly say that she saved his life by going to bat for him over a heart catheter procedure his doctor ordered for him but the ER doc did NOT want to do; his 'test numbers simply weren't supporting the need for it'. Meanwhile, he was about a day away from having a massive heart attack and needed triple bypass surgery. So 'support' in the hospital can be non existent these days, that's for sure.
I am so sorry and that must have been awful for you both. Next time ask to see your husband's social worker so they can help navigate and assist with some issues.
Did he go straight home? Ask his primary doctor for help finding home help care, physical therapy and maybe some part time caregivers.
When I complained to Moms PCP about something that happened at Moms hospital stay, he said "that's the healthcare system". She was given an antibiotic with penicillin in it which she was allergic to. And since that hospitals records show that, she should not have been given it.
What type of problem did u have that you felt you had no support?
Please tell your Dr, social worker, a nurse your clergy…whoever you see in a position of authority and tell them you need help finding resources to assist you. Try and be clear what you are wanting…caregiver support for yourself or help for your husband (assistance w/his showering, feeding etc).
if you are online (and you got on this forum, so I assume you have access to internet), go to Alzheimers.org. You will see links for support. Google your state and then caregiver support, you should see links for what’s in your area.
Support and help is out there. However they won’t come to you…you have to initiate it.
Keep us posted if you can. That way others in your same situation can see what you did and what was helpful (or unhelpful) for you.
There are many programs and services to help. Start with your insurance company and your primary health provider. I learned a long time ago to never count on anyone. I have always planed on ways to take care of myself.
I'm not sure what support you are expecting. No one is going to come to the house to help unless you hire someone yourself. Most hospitals have a Social Services Department that might help you get started on where to look for the kinds of help you may need. Look for community Senior Services agencies which might have resources or referrals for different kinds of help.
You will gain experience at being something of a "general contractor" finding and arranging for the help you and your husband need. No one is going to swoop in to take over, but don't panic. Address one need at a time. Each problem you solve will give you some encouragement.
I would contact your local Dept. of Aging - They should be able to help you/ Contact an elder care attorney to get Will and POAs [financial and health care] if you don't already have these. If your husband is still in hospital ask for Social Worker -most hospitals have one and they can be very helpful. You might consider having a counselor for yourself to help deal with your situation. Your husband's doctor[s] would also be able to help direct you on some resources- you need POA for them to really talk with you about your husband's conditions - he can also give written permission. I take it from your note that you do not have children? or relatives able/willing to help. If you do, talking with them can be very helpful
You could look in your area for elder care managers. Usually their services would be private pay, but there might be something similar available through a low-income program. A care manager would get to know your and your husband's needs. You would provide the care manager with detailed info on your health. Then if one of you needs to go to the hospital, you call the care manager and ask her to meet you at the hospital, to be your advocate, explain info from doctors, maybe get you further care or services. At least tell your family members what you experienced in the hospital. Is it possible one of them can come to the hospital with you next time? Just for a day or two? Not just for sympathy, but to help you deal with all the medical information, all the paperwork, all the routines that make no sense, all the gaps in day-to-day care.
Being sick, and having to go to the hospital is always stressful. Most hospitals have social workers, and also people who advocate for patients, you can ask for help from them. Also get connected with a local social worker who might be able to answer some of your questions. I hope your husband has a full recovery. All the best to you both.
Contact your local Church. Also your husband's primary care doc can write orders for home care--VNA, physical therapy, speech therapy, home blood draw and if you quality some health insurance offer meals for one week or so upon discharge. A "male" CNA can be requested for showering.
It's a new way of looking at things and a lot of new vocabulary--safe discharge, ambulatory, co-pay, etc. A hospital social worker can set up a home visit by your local VNA who will have a nurse come out and do an assessment.
Tell the Social Worker your story and bring on the troops--do not bring hubby home until everything is in place...also check out your local medical supply store. Your PCP can write orders for railings around the toilet, shower chair, shower nozzle and handicap railings in the shower. Depending on your insurance, a lot of this will be covered.
If your husband was a Veteran--this will be of some help. As there is Aid & Attendance.
Usually I have found the nurses who work for the Primary Care Doctor (for your husband) are knowledgeable. They will spend more time with you discussing resources.
You need to find out what resources are available. Have everything delivered.
Start with the hospital Social Worker and Visiting Nurses Association.
When things settle down, once you know what your husband's "baseline" is--looking into one morning a week respite care. Some places provide transportation. Your PCP can write the order and some have an RN on duty--speech and physical therapy can be provided (along with a co-pay) through health insurance.
Some of the respite facilities are on a sliding scale. Some are better than others. Some of the newer ones have--short-term rehab, respite, long-term care, assisted living, nursing home, palliative and hospice care.
There is help out there. You are not alone in all of this. I hope this helped.
I may be wrong, but are you asking where your personal support system is? What kind of support did/do you require? Hospital staff are happy to ask chaplains and case management to talk to you and arrange help... but you need to ask for it. Do you and your husband have "younger" friends or belong to a community of faith? Again, people are willing to help, within reason, if asked.
It is really not the job of the hospital to provide support. They are there to take care of sick patients. They are usually short-staffed, so just getting someone to answer the bell or bring you to the bathroom is an ordeal. In my experience in the hospital with both my elderly parents, I had to take charge and request thing be done, otherwise, they do nothing but the basic care. You could ask the doctor if there is anyone to help you, but usually it has to do with transfer to a rehab center, or at home care services. Maybe there is someone in the hospital administration that can offer assistance, you need to ask for help as they do not automatically offer it.
Nell, your husband must have lived a good life and be in good physical condition if this is his first hospitalization. Kudos to him and to you for being such a concerned wife.
As others have asked, specifically, what kind of support did you anticipate?
If it's family, I sent out e-mails to family, friends and church friends, but called a more narrow selected group with more personal information, depending on the situation. Then I sent out thank you cards to those who responded, and either called or visited the hospital.
You'll have to build your own support if what you're looking for is support outside of the hospital. If the latter as others suggested, staff are usually (and more so since the pandemic, and apparently according to local news this is happening again) overwhelmed and challenged with the number of patients (some hospitals have different patient to nurse ratios), all the paperwork, and responding to needs of patients, especially those who are very needy.
Support also depends on the hospital. Over the years, I've learned that religious affiliated hospitals can offer more support and understanding (as can a religious affiliated rehab facility). Sometimes smaller hospitals also are more supportive.
One factor I've seen with good hospitals slipping into poorer support if not mediocrity is takeovers by for profit organizations, especially out of state ones which seem to be focused on health care as a portfolio asset as opposed to a necessary service.
I would start with contacting family and friends. If it's help you wanted for yourself, please post back with more detail, as there are many options available, ranging from local senior centers to cities, to counties, to the state.
Given your husband's age, I'm guessing he may have served later in the Korean War, and also in the Vietnam War. Have you explored getting help from the VA? If not, it's a good idea to start, so you at least know what's available.
If you need more info on contacting the VA, just post again; many folks here are familiar with VA quals and operations.
Good luck with your (hopefully!) new plans and efforts to garner support.
I had a BUNCH of tests this week on my heart. After I was done, (and I felt awful, just awful) the nurse walked me to the door and wished me a good day. (Too late for THAT!) but there was no offer of help or support going forward. They didn't even ask if I had anyone at home to 'watch me'.
If I had been having chemo or something, I would have established my own home care if necessary, but it would have been up to me. Yes, I have a DH at home, but he doesn't 'do' sick people and cannot handle it when I am sick.
Perhaps you need to hire some CG's? Someone to help you out in your general day to day. You don't indicate if you have family, but frankly, my family is so busy with THEIR own families, I don't bother them.
We recently moved and don't have that close a relationship with anyone yet, and may never have it. We lived in the same neighborhood for 43 years--and moving has been hard.
I am fully aware if I require anything 'surgical' for my heart, I will need to reach out and get some help, whether from family or close friends. Hospitals just cannot provide any care after they release you. I'm sorry you had a hard time.
I'm very active in my church and my 'church family' is fabulous--I just don't know them well yet.
I wish you luck. If I lived by you, I would have happily helped you out--and I think that is the case a lot of the time--we assume neighbors won't want to help, when the truth is far from that! It takes a VILLAGE to raise a family and a VILLAGE to care for us as we age.
Birth of my third child: Your posting reminds me of Christmas Eve, long ago, when I was admitted to the local Catholic hospital that the nuns ran; they professed that they couldn't find a nun to provide childcare while I delivered c-section. It was a scary night as the raging storm outside forced road closures that prevented me from asking my brother to help. I still feel the sting of such pathetic behavior from people who were paid to make my ordeal less stressful.
This is just one example of why I have little trust in people.
This is concerning. You went to hospital to have a baby on Christmas Eve? And you had two other children with you at the hospital who needed babysitter?? Or you left the other two at home with no one to sit with them? And a storm outside prevented you from getting your brother to where the kids were??? --- Where were the 2 older kids while you were giving birth?
If your husband is still hospitalized, find the nurse in charge or ask if there is an intermediary nurse and talk to them... they will know more about your husband and his condition than all the expert doctors because nurses need to know it ALL whereas doctors usually only concentrate on their area of whatever they are specializing in. Found that out when dad was hospitalized for a month... the intermediary was absolutely wonderful and always took the time to explain things to us (she's the one who told us to always talk to an experienced nurse because they know the big picture).
If it's emotional and/or spiritual support, ask to speak to a minister or counselor. Most hospitals either have them on staff or are open to having outside clergy come and talk to you. You don't need to be religious, either... people called to ministry are by nature good listeners who love people and usually that's what we need most, just someone to listen and comfort us.
And it's never too late to establish community-based 'family'... senior centers, churches, crafting circles, emotional support groups, etc. Making friends is never easy at any age but I think once you find things in common with a group of people- in our case, aging and all the struggles that go with it- it becomes easier to find others in the same boat as you that are willing to share their own experiences. Have you considered Meals on Wheels once a week? They do more than just provide you with a meal, their visit means a wellness check on both you and your husband.
And lastly, I would highly recommend calling your health insurance provider and find out if your coverage will provide for any kind of at-home services and equipment. **Call and speak to an actual person** who can help you navigate your benefit package. I was shocked at how much help my dad was eligible for under his VERY basic Aetna/Medicare plan. The angel at Aetna that I spoke with was on the phone with me for nearly an hour, LISTENED to me, and provided immediate help with arranging home nursing and getting medical appliances. She was the most compassionate person I could have ever hoped for to help me.
Good luck to you, Nell... I know you will find helpful answers on this forum. It's helped me tremendously over the last 5 years with my parents when I was scared and had no idea how to help them. They are both gone now but I still read the forums nearly every day because I'm looking ahead to a time when hubs and I will be asking the same questions for ourselves.
Sometimes, you have to ask for help...a Social Worker, a Patient Advocate, a Clergy, homegoing assistance ...hospitals are not always the caring place you think they should be. Fill out that homegoing survey when you get it in the mail, and be honest. God Bless.
What kind of support were you wanting? If it is visitors, if you have no local family and no friends left in the area (who would probably have been your age anyway), you said those people don't exist.
Who in the family are you the closest to? Is there a family member that keeps in touch all the time? Would you be able to move into an elderly community near this family?
Other than medical care designated by the conditions, there really isnt' any kind of support. If you need help getting in-home after care, you will have to talk to social worker at the hospital. Or call your doctor and explain your needs to see if they can send a social worker, in home health agency, etc to visit with you.
Nell...try Senior services or Council on Aging in your area, Palliative Care/Hospice or if your insurance has assistance for this. I'm in the same boat, my husband is 14 years my senior and I'm not in great health. I have found all the above services to be very creative and helpful. Hope this helps. I'll be glad to share my experiences with you.
It’s so interesting to read all the comments. They reinforce the idea that I’ve had ever since I became a caregiver for my dad many years ago - we are expected to be Managers. Not just of the health issues but also every business aspect of taking care of a sick person. There are so many things to do. Most of us are bewildered at first at how much we must do. We grow into the job. Don’t expect much support because there are few people to help voluntarily, even if you have family. Even someone to talk to during the stressful times makes another problem because it takes time away from the other things that we MUST manage. It’s all so difficult.
Nell73: Firstly, that is quite astonishing that your husband had his first hospital encounter at 86 years of age. Secondly and to answer your question, most hospitals should have on staff a patient liaison. Whenever I have been hospitalzed, I have been approached while in the hospital bed by specialists, other individuals who ask if you require home care after discharge and many others. While certainly you have to advocate for yourself, there IS staff to answer your many questions.
Most hospitals have someone, a social worker or other qualified person, who could at least address the question with and for you. You have to be pretty specific about what kind of support you seek. It depends, too, on whether he is still in the hospital or if you need help caring for him when he is discharged to home care. My experience with Home Instead has been excellent. Not inexpensive, but nothing is.
When you say "where is the support"? What are you wanting exactly? A social worker or someone to talk about how to handle his care once he is released? If he requires care after release, there is usually someone who comes in to talk with you about that. Tell the nurse that you need to talk with someone if he is getting close to discharge.
Even if you had friends and family around, the usually aren't any help. Everyone has their own families and their own homes and their own health issues. We have experienced no support from anyone.
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Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
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Tell us what happened, if you feel so inclined.
Did he go straight home? Ask his primary doctor for help finding home help care, physical therapy and maybe some part time caregivers.
Good luck to you!
What type of problem did u have that you felt you had no support?
if you are online (and you got on this forum, so I assume you have access to internet), go to Alzheimers.org. You will see links for support. Google your state and then caregiver support, you should see links for what’s in your area.
Support and help is out there. However they won’t come to you…you have to initiate it.
Keep us posted if you can. That way others in your same situation can see what you did and what was helpful (or unhelpful) for you.
I learned a long time ago to never count on anyone. I have always planed on ways to take care of myself.
You will gain experience at being something of a "general contractor" finding and arranging for the help you and your husband need. No one is going to swoop in to take over, but don't panic. Address one need at a time. Each problem you solve will give you some encouragement.
Contact your local Church. Also your husband's primary care doc can write orders for home care--VNA, physical therapy, speech therapy, home blood draw and if you quality some health insurance offer meals for one week or so upon discharge. A "male" CNA can be requested for showering.
It's a new way of looking at things and a lot of new vocabulary--safe discharge, ambulatory, co-pay, etc. A hospital social worker can set up a home visit by your local VNA who will have a nurse come out and do an assessment.
Tell the Social Worker your story and bring on the troops--do not bring hubby home until everything is in place...also check out your local medical supply store. Your PCP can write orders for railings around the toilet, shower chair, shower nozzle and handicap railings in the shower. Depending on your insurance, a lot of this will be covered.
If your husband was a Veteran--this will be of some help. As there is Aid & Attendance.
Usually I have found the nurses who work for the Primary Care Doctor (for your husband) are knowledgeable. They will spend more time with you discussing resources.
You need to find out what resources are available. Have everything delivered.
Start with the hospital Social Worker and Visiting Nurses Association.
When things settle down, once you know what your husband's "baseline" is--looking into one morning a week respite care. Some places provide transportation. Your PCP can write the order and some have an RN on duty--speech and physical therapy can be provided (along with a co-pay) through health insurance.
Some of the respite facilities are on a sliding scale. Some are better than others. Some of the newer ones have--short-term rehab, respite, long-term care, assisted living, nursing home, palliative and hospice care.
There is help out there. You are not alone in all of this.
I hope this helped.
As others have asked, specifically, what kind of support did you anticipate?
If it's family, I sent out e-mails to family, friends and church friends, but called a more narrow selected group with more personal information, depending on the situation. Then I sent out thank you cards to those who responded, and either called or visited the hospital.
You'll have to build your own support if what you're looking for is support outside of the hospital. If the latter as others suggested, staff are usually (and more so since the pandemic, and apparently according to local news this is happening again) overwhelmed and challenged with the number of patients (some hospitals have different patient to nurse ratios), all the paperwork, and responding to needs of patients, especially those who are very needy.
Support also depends on the hospital. Over the years, I've learned that religious affiliated hospitals can offer more support and understanding (as can a religious affiliated rehab facility). Sometimes smaller hospitals also are more supportive.
One factor I've seen with good hospitals slipping into poorer support if not mediocrity is takeovers by for profit organizations, especially out of state ones which seem to be focused on health care as a portfolio asset as opposed to a necessary service.
I would start with contacting family and friends. If it's help you wanted for yourself, please post back with more detail, as there are many options available, ranging from local senior centers to cities, to counties, to the state.
Given your husband's age, I'm guessing he may have served later in the Korean War, and also in the Vietnam War. Have you explored getting help from the VA? If not, it's a good idea to start, so you at least know what's available.
If you need more info on contacting the VA, just post again; many folks here are familiar with VA quals and operations.
Good luck with your (hopefully!) new plans and efforts to garner support.
If I had been having chemo or something, I would have established my own home care if necessary, but it would have been up to me. Yes, I have a DH at home, but he doesn't 'do' sick people and cannot handle it when I am sick.
Perhaps you need to hire some CG's? Someone to help you out in your general day to day. You don't indicate if you have family, but frankly, my family is so busy with THEIR own families, I don't bother them.
We recently moved and don't have that close a relationship with anyone yet, and may never have it. We lived in the same neighborhood for 43 years--and moving has been hard.
I am fully aware if I require anything 'surgical' for my heart, I will need to reach out and get some help, whether from family or close friends. Hospitals just cannot provide any care after they release you. I'm sorry you had a hard time.
I'm very active in my church and my 'church family' is fabulous--I just don't know them well yet.
I wish you luck. If I lived by you, I would have happily helped you out--and I think that is the case a lot of the time--we assume neighbors won't want to help, when the truth is far from that! It takes a VILLAGE to raise a family and a VILLAGE to care for us as we age.
This is just one example of why I have little trust in people.
If your husband is still hospitalized, find the nurse in charge or ask if there is an intermediary nurse and talk to them... they will know more about your husband and his condition than all the expert doctors because nurses need to know it ALL whereas doctors usually only concentrate on their area of whatever they are specializing in. Found that out when dad was hospitalized for a month... the intermediary was absolutely wonderful and always took the time to explain things to us (she's the one who told us to always talk to an experienced nurse because they know the big picture).
If it's emotional and/or spiritual support, ask to speak to a minister or counselor. Most hospitals either have them on staff or are open to having outside clergy come and talk to you. You don't need to be religious, either... people called to ministry are by nature good listeners who love people and usually that's what we need most, just someone to listen and comfort us.
And it's never too late to establish community-based 'family'... senior centers, churches, crafting circles, emotional support groups, etc. Making friends is never easy at any age but I think once you find things in common with a group of people- in our case, aging and all the struggles that go with it- it becomes easier to find others in the same boat as you that are willing to share their own experiences. Have you considered Meals on Wheels once a week? They do more than just provide you with a meal, their visit means a wellness check on both you and your husband.
And lastly, I would highly recommend calling your health insurance provider and find out if your coverage will provide for any kind of at-home services and equipment. **Call and speak to an actual person** who can help you navigate your benefit package. I was shocked at how much help my dad was eligible for under his VERY basic Aetna/Medicare plan. The angel at Aetna that I spoke with was on the phone with me for nearly an hour, LISTENED to me, and provided immediate help with arranging home nursing and getting medical appliances. She was the most compassionate person I could have ever hoped for to help me.
Good luck to you, Nell... I know you will find helpful answers on this forum. It's helped me tremendously over the last 5 years with my parents when I was scared and had no idea how to help them. They are both gone now but I still read the forums nearly every day because I'm looking ahead to a time when hubs and I will be asking the same questions for ourselves.
Who in the family are you the closest to? Is there a family member that keeps in touch all the time? Would you be able to move into an elderly community near this family?
Other than medical care designated by the conditions, there really isnt' any kind of support. If you need help getting in-home after care, you will have to talk to social worker at the hospital. Or call your doctor and explain your needs to see if they can send a social worker, in home health agency, etc to visit with you.
Hope this helps. I'll be glad to share my experiences with you.
Even if you had friends and family around, the usually aren't any help. Everyone has their own families and their own homes and their own health issues. We have experienced no support from anyone.