My 87-year-old dad has been in excellent physical condition, but his semi-early stage vascular dementia caused me to move him to a senior community with support for high-functioning people with dementia. Then he fell off his bed in exactly the wrong place and broke his hip. Into the hospital for successful hip surgery, except, among other complications, they found he could not swallow food. It would aspirate into the lungs and cause pneumonia. After a couple of days including a barium swallow study and an ENT observation, they have recommended a feeding tube. Not permanently (maybe). They hope that a speech therapist can give the right treatment to correct the problem--but it may take weeks or months. Aside from the anger at the hospital/surgery/anesthesiologist who probably caused the problem, I have looked up stuff about feeding tubes (which often are included in articles about the elderly, dementia, cancer, etc--in other words, why prolong the suffering). And I'm not even mentioning the added delirium, confusion, and agitation of being stuck in a hospital bed day after day (OK, I guess I am mentioning it).
Of course, he is going to get the feeding tube. How could I say no? The alternative wouldn't even occur to my dad. But I hate it, hate the thought of it, wonder about its problems, and wonder when/how often/etc we can test to see if maybe he is capable of eating.
It's not like I am asking any questions here. I know what the plan is. I just can't imagine how this brilliant, dynamic man has become so compromised again and again and again. And it seems to be happening so fast.
The following user gives a hug of support to sonofvasc: Tigerlily53 (04-23-2013)
You are truly going through a devastating period watching your Dad's health decline and being faced with these difficult decisions and changes. I will just raise a question. Is there a chance he might have had a stroke that interfered with his swallowing? That certainly can happen in vascular disease of the brain, and if this was a sudden development, I would ask his Drs about that possibility, especially if any other symptoms occured. A feeding tube will keep him from aspirating, and if it was a stroke, he may fully recover his swallowing ability. It can be tested periodically with small amounts of just plain water, which if aspirated, will not be likely to cause pneumonia like food or drinks that contain nutrients to feed bacteria. Hopefully, this will be a temporary solution, and his swallowing ability will return and the tube removed. You might ask about a support group in your area for caregivers of family with dementia. Most communities have active support groups to help family members cope with this tragic condition. I'm glad you found these boards for support, too, and hope your Dad's condition improves.
SonofVasc.. I am so sorry that you are having to go through this. I also need to tell you that what you have described does happen. It is probably not some huge mistake on the part of the medical team, but a result of the "semi-earlyl" vascular dementia. Your Dad was showing enough symptoms of the disease for you to move him into a care facility. My guess is that he was closer to mid stages. Vascular dementia has to do with blood flow to the brain. Any time a loved one with dementia has a medical trauma (broken hip), is taken out of their routine (hospitalized), and is put under anesthesia... there is a possibility of the cognitive decline advancing. The surgery itself can be successful but leave many other problems behind unrelated to the hip. So the added delirium, confusion, and agitation are probably due to the cognitive decline he experienced rather than some "mistake". I have seen it many many times. Four that I know of right now have done the same as your Dad... The stories all start with Mom/Dad was in AL, had to have surgery, and this is what happened.
When faced with the decisions after the surgery it is overwhelming, confusing, and heart wrenching. Will Dad get better? There is no way of knowing. Will this temporary feeding tube solution really be temporary? There is no way of knowing. Does your Dad have a living will or medical directive to guide you and help you understand his wishes? Do you have medical power of attorney for him? You do need to think about the possibilities going forward and understand your options.
Your Dad is 87 and has vascular dementia. He is delirious, confused, and agitated. He has a feeding tube, and probably IVs that he does not understand. He will probably need physical therapy which he is not going to understand or be able to cooperate with. He may become bed bound. If the swallowing issues are not temporary... where do you go from here?
I would definitely talk to a geriatric neurologist who specializes in dementia. Try to find out what is going on in Dad's brain and why he is not longer swallowing. I would talk to Palliative Care to understand options if Dad's ability to swallow does not return. If there is no living will or medical power of attorney, your ability to make decisions may be limited. Remember that most doctors are not dementia experts and treat the medical problem without regard to the dementia. You need to gather a team that understands the dementia and the part it plays in what is going on.
I do hope Dad improves, vent when you need, and know my thoughts and prayers are with you both as you go through this difficult time.
Deb is right, it is going downhill. Dad got worse so now he cannot eat or swallow. You should ask the doctor to find out if they are sure it will be temporary and how long. Also you need to ask the question if he won't have permanent tubing later on? For sure now he wants to be fed. My late FIL always wanted to be cared for. He was old-school and 91. But my late FIL never got to this point yet although he had trouble eating the last week. (He died from stroke or heart attack in his sleep.)
The other issue is you need to ask what his choice is: feeding tube for the rest of his life? Or no permanent feeding? Does he have health directive that tells you what to do?
Normally demented people are not recommended to have permanent feeding tube because it would confuse them and they will pull the tube and hurt themselves. He would get more infections via the tube. It is a hard question. Some member here does keep the feeding tube on the parent and she is doing OK. It is really up to you and your Dad. It is a matter of values and choices. Hospice usually doesn't use feeding tube at all if I got it right.
Sorry to hear this, it sure does seem like a lot going wrong at once. I hope your father makes good progress following his surgery and is able to be close to what he once was. If you don't mind me asking was he in a nursing home or assisted living facility? Where is he expected to go following surgery, do you know what types of services they will provide for him?
I thank you all for your supportive answers. When my dad's memory first began slipping, I never realized it would become this tough, never realized the side-issues that would occur. I don't think he had a stroke during the surgery because they took an MRI afterwards, based on other reasons, and told me nothing. Perhaps my dad is in the mid-stages of dementia. I tend to compare him to others who participate in the group in the place he lives (lived?) because he was pretty high functioning there, but in the seven stages, he is clearly in the middle. But being in the hospital (at least for now), seems to cause a lot more confusion that may or may not be temporary.
He now has the feeding tube in and supposedly will start getting fed this morning for the first time in eight days. That, in itself, could cause the confusion. I do have power of attorney and there is an end-of-life directive but I'm clearly not there at this time. I have sisters who, due to problems of their own, aren't fully aware of his condition. But they will certainly find out a lot more in the days to come and I wouldn't make any decisions alone.
Dad lived in an assisted living community for the past two months until this happened. They won't let him back in with a feeding tube. A lot depends on whether he can eat again, like his entire quality of life. He has to be constantly reminded why he is there, why I won't take him home.
Assume Dad is in mid-stage of dementia. It is still very natural that he would decline a little bit after being hospitalized. My late FIL had moderate-severe Alzheimer's and he always declined a little bit after each hospitalization in mid-stage. Usually trauma can make the disease decline. Feeding tube is not something he would like because he would want to pull out the tubes and he would wonder why he needs the tube...
He would not know where he is because he lost the ability to know where he is. Not to mention it is in a hospital or a nursing home. I know some memory units and AL don't take feeding tube. Where my late FIL was doesn't take feeding tube because it is aggressive medical treatment and needs to be in the hospital. If it is not hospice and if it is temporary, it is OK to have feeding tube for now in the hospital. Don't expect that he will recover his cognition level. He will decline bit by bit although it would not be a big drop (the person would decline every 6 months or 1 year or after each trauma.)
I sure hope you communicate with your sisters before they get mad at you... But if they are not there to care for Dad, it is up to you.
Please check with the doctor about the nature of this feeding tube - how long and etc. There are some skilled-care nursing homes that take feeding tube residents.
SonofVasc, as I said, it is not unusual for those who have dementia to take a huge decline related to a medical crisis and hospitalization, especially when it includes surgery and anesthesia. Your Dad was in the Mid stages when he entered the hospital. He is at a very different stage now. Mid stages can become late stages quickly. If no stroke is evident, then the advancement of the cognitive decline may have affected the area of the brain that controls swallowing. Abilities taken by the advancement of the disease, usually do not return.
At some point you may need to make some very hard decisions. You will have to look at what is being done, in relation to the dementia progression, and decide what course you want to proceed with. Do you want to continue with the feeding tube and other measures or go in the direction of palliative care or Hospice. These are decisions that you do need to make with a good geriatric neurologist who understands dementia and a palliative care group. This will give you knowledge of both sides of the decision.
Most skilled care facilities do take patients who are stable on a feeding tube. They are not permitted in Assisted Living because of the constant nursing intervention that is needed. Assisted Living usually includes the locked dementia unit. The only difference is the additional help and the coded doors which prevent elopement. In a skilled care facility there are 24/7 nurses and doctor available. Please ask for a Hospital Social Worker consult. They can help you find the right placement. They can even set up facility evaluations to facilitate his acceptance into a facility. Use all the expertise you can find.
You also mentioned that you "reminded" Dad where he is and why he is in the hospital.
You may want to make it a light conversation or a short answer. Like he is sick now so he is under treatment. Don't explain too much details or he would be upset. Even if you explain many times, Dad may not get it and will ask again and again. He may think he is in the cafe while he is eating. My late FIL was always confused in the hospital. You should realize that Dad is in his reality so you really don't want to burden him with the true facts and he would be very upset. Just validate his feelings and distract him sometimes. Dad will get worse given his dementia and feeding tube/hospital.
Swallowing problem due to severe stage is very common. However, if Dad is not in stage 6 yet, he may not be in severe stage. The order of the defects may not exactly go with the stages. Usually the other way of trying to deal with food eating is to try pureed food.
Unfortunately this is a natural process that occurs quite commonly with age. Depending on how your father responds over the next couple of days will tell a lot about his future outlook. A skilled nursing facility may be the next best place for him to go. The cost of living in a skilled nursing facility is more expensive than that of an assisted living facility, but there he will receive a variety of services that will be extremely beneficial to both his short term and long term health. Stigmas associated with skilled nursing facilities (nursing homes) often take away from the benefits they provide their residents. Have you looked into any nursing homes yet? Different nursing homes, provide their residents with a variety of luxuries and privileges. If you would like to stay close to your father I might start looking into different nursing homes in your area and see if you could imagine your father in any of those places. Generally speaking, the staff in these places are more than happy to help and provide information. By the way how is your father doing now? Has he taken well to the new diet?
Does he have a health care directive? My husband and I drew those up 3 yrs ago when he was not obviously cognititively impaired, although looking back I can see that it was beginning. Anyway, we both have directed our Health Care Power of Attorney (our daughter) to avoid resuscitation and feeding tubes. It's all been notarized and she has a copy. However, we have moved to a new state to be near the kids, and I am not sure it is recognized here and I don't think he is cognitively alert enough to do it now--although I am sure he would disagree. I hate to consult an attorney without him, but I think I will.
I remember earlier in the post, your Dad said he wanted to eat and live.
I think this says clearly that Dad doesn't want to let go and wants to be fed.
As to the feeding tube, maybe Dad understands it. But it doesn't hurt to ask Dad again now about his wish.
Everyone has a right to be fed if he chose to. Don't assume everyone has to go down the path of hospice and no feeding tube. Catholics don't allow that as far as I know. I really think this is a personal choice.
Seems to me that artifically keeping someone alive is interfering in God's will, however I understand that not everyone feels that way. My husband actually is a cradle Catholic although I am not much of anything myself. However, he hasn't been to mass since before we were married many years ago (he's also divorced from his first Catholic wife, who has gone on to an additional three husbands--also something Catholics "don't allow." But after the death of her 4th husband, she went and asked for forgiveness and is now back in the fold. I am acquainted with a man who is a 90 year old Holocaust survivor who undergoes kidney dialysis three times a week at who knows how much cost to Medicare, because "his wife couldn't manage without him." I only hope that no one tries to keep me alive if I get in this condition. When my mom had terminal liver cancer at age 80, she refused chemo and surgery, opting for palliative care only. She died soon thereafter, at home and in peace.
It is true that no one wants this artificial thing. My late FIL didn't really choose it but he didn't spell it out. I just heard that he did say he didn't want CPR and etc. His health directive was vague so it was up to my husband to decide. We did ask the memory unit about his situation - whether feeding tube or hospital would help, but they said he was too weak to have any benefit so he left the natural way - he died in his sleep with sudden stroke/heart attack. He was not eating a lot the last week before he died.
Some older people like my parents or my late FIL (he was 92) tend to feel that they want to be saved and don't want to tie up with something that will stop their lives. They want a chance to be saved - this is the old way long long time ago. My parents are in the late 80s and early 90s. They leave the decision to their kids.
The point is they don't want to have a "fixed" way to do it but they want to think about it. Not that they want to be tied up artificially for a long time. It is a matter of values and thoughts - no one can predict the outcome.
Thank you all for your ideas, support, questions, considerations, etc. Right now, Dad is doing pretty well in many ways. He is now living at a rehab facility (aka a nursing home, with therapy). He is able to eat most foods now and probably will have full swallowing ability soon. Physical therapy is also going very well as he uses a walker to go 400 plus feet at a time. However, he has declined mentally and can't remember anything from one moment to the next. Therein lies most of the problems of today. For instance, he has a large prostate and has to go to the bathroom frequently. So he wakes up or, wide awake, he decides he has to go. He ignores the nearby wheelchair and walker, and decides to just stand up--totally unaware that he is recovering from hip surgery (in fact, he doesn't seem to know what 'hip' means). I have hired 'sitters' to be near him 24 hours a day ($19 bucks an hour). Yes, I am there much of the time, but it is unpredictable when/whether I will be at his bedside to catch him. My sisters are aware of the situation and one has come to visit him a couple of times, but are unable to provide any real assistance.
Dad hates it there. He constantly tells me he wants to go home (though it is unclear where he is talking about). He just feels constrained there. Although, I believe he is physically able to go out and I can get him into my car and take him somewhere, Medicare doesn't allow him to leave the facility. After 6 weeks, he may be able to have the stomach tube removed and hopefully return to his assisted living place that he enjoyed, the doctor recommends against taking out the tube anytime soon. He doesn't eat or drink enough. His weight was 128 pounds two weeks ago. It was 123 yesterday. Because blood tests indicate dehydration, they still use the tube to give him liquids (and if his weight continues to go down, he can get food through it). I tell him that if he wants to go home (not elaborating about where home is), he has to eat and drink more, he doesn't accept it--says he doesn't feel like drinking, doesn't like the food, etc. Although no longer delirious, he is more upset than I have ever seen him. He hasn't said anything about not wanting to live, he just doesn't see the connection between therapy and nutrition and his future health. I think I am more upset by his demeanor than I am by his cognition.
I have taken one day off from being with him (for at least a couple of hours, usually many more) in the past month plus, and don't foresee much change. He is used to me coming there (even though I encourage his 'sitters' to engage him), and does better with therapy when I am around. I realize that most of you reading this have been ongoing caregivers, often within your own homes, without the support of a facility. But this is new to me and I am still learning how to live life this way. Forgive me for this long rant, but it seems like the right place for it. I appreciate everything that you have written and hope to get here more often. But I have to get going now. The doctor is coming today.