My heart is sad for my dad today. I am usually an up beat kinda girl, but hard decisions are at my feet. The nursing home called and my dad has lost 8 pounds in 3 months. He now weighs 110!! He's lost 26 pounds in less than a year. He still feeds himself and does pretty good with it, drinks ensures (although I'm not 100% sure they see that he drinks it all). I know the should we get a feeding tube issue is here. He has told me no before in the past, that he didn't want to lay there and not know what was going on and be kept alive only by that. But he does still know mostly what is going on, he just can't communicate very well so it's hard to judge how much he understands. Can a feeding tube be temporary? Like can we remove it once he begins to decline more cognitively?? Like for instance when he doesn't know who we are, he's confused cant get out of bed? I know he wouldn't want to live like that, I know I wouldn't! Any thoughts? Support? This is hard and I'm scared right now.

This is almost always a hard decision. Just occasionally a person with HD will develop swallowing problems early while they are still active and enjoying life and then the decision is clear to go ahead. The second time we were asked about a feeding tube for my late MIL she was in a comatose state and very obviously in the active process of dying. We refused. That was not a difficult decision. Although we were very sad to lose her we knew the feeding tube wouldn't prolong her life. The first time we were asked she had just been admitted to the nursing home a few weeks before. She had a sudden weight loss and had slipped into a semi-coma. We approved the feeding tube because it seemed like everything had happened very suddenly and we did not know what was going on. It might have been an end of life thing but maybe it was her new medication. The doctor thought it was end of life. He was shocked to find her sitting up and talking to him shortly after the feeding tube was put in and a medication change was made. It WAS a medication problem. There was one prescribed by a new doctor who was under the impression she had Parkinson's Disease, her first, incorrect diagnosis and we asked him to take her off of it. She was able to eat pureed foods and gained weight and when the tube came out on its own we refused to authorize the insertion of a new tube. She continued without weight loss for another five years until she died.

If he has said in the past that he doesn't want a feeding tube, I would be inclined to go with that unless he says otherwise because you would want to respect his wishes. Could you ask him? "Dad, you have said in the past that you don't want a feeding tube. However, you have lost weight and the nursing home wants to know if you have changed your mind. Do you want one now? It may help to keep your weight up."

Sometime people who have said in the past that they don't want one will change their mind. If this happens it is usually with younger patients or with people who develop swallowing problems earlier than they expected would happen and still have quality of life.

Once a feeding tube is in, you may need a court order to have it removed. However, they often fall out and then you can refuse to have it reinserted if at that point you think it is futile.

I have noticed that sometimes other people may be critical of decisions that you make about feeding tubes. They may mistakenly that they are a panacea or they may think they understand a complex situation when they don't. I remember talking about our decision to get the feeding tube placed on a medical support email list and someone said, "I cannot believe you are doing this to a semi-comatose woman! Why would you put her through this?" And maybe they might have been right if she had been actively dying. And we would have felt guilty. But as it happened she wasn't and the next five years were good ones for her. She did enjoy those years and I'm glad she had them and we had those extra years with her. The truth is that neither the critic or our family knew what was really going on. We could only make our best decision based on reasoning and with love.

Thank you Marsha for your reply! I would give you a hug if able...I appreciate your thoughts...he has lost this weight since placed in home (not quite a year), he's pretty much wc bound now and his muscles are wasting....this is hard and terrible. I just want to make the best decision and make sure he has a good quality of life with the time he has left. Thanks again for your insight.

We were faced with the feeding tube question much earlier. My husband is still living with us and still enjoying the family pretty well. In December, he aspirated terribly and ended up in the hospital. He was so weak he failed his swallowing test altogether. There was no choice at that point but to put a feeding tube in to hydrate, nourish, and medicate him. His decline was so rapid that we all anticipated he would regain his strength and ability to eat again. He was hospitalized for a month. He has now been home for 2 months. I am happy to say that we are only flushing to maintain his feeding tube at this point. His swallowing has gotten much stronger and he is able to manage 3 meals a day plus a smoothie to maintain his weight. I am told the doctors won't want to remove the tube because the reason for his swallowing difficulty has not gone away. A long time ago we had discussed the option of a feeding tube. We, too, thought it would be in the end stage and only prolong his suffering. We are glad that we opted for the tube at this point. He is back at home and able to enjoy life again.

Patty

So sorry you are at this part of the journey-so very hard to have to make these decisions. We are in the early parts, but my husband has had chocking issues for a couple of years. It has improved with a change in meds, but made us really have to visit this question sooner than later. My husband and I have spoken with his various doctors to get an idea of the ramifications of either decision and saw an attorney o get our financial and medical affairs in order while my husband is in the early stages. I am thankful my husband is so practical and proactive. It is a hard conversation to have at any point. I pray you peace in whatever decisions you have to make. There are no wrong decisions regardless of the outcome-just ones that make sense in the moment with all the information you can gather.

Vicky

Thank you Vicky for replying...we chose not to put in a tube...my dad passed away about 3 weeks ago.

Patty, I'm so glad to hear that your husband is doing well. My dad kept telling me "no" everytime I asked. He was bed bound and I respected his wishes. He died about 3 weeks ago.

So very sorry you lost him. Sounds like the right decisions were made according to his wishes and likely would have not prolonged his life in any way for him. I hope you find peace in the fact that you honored HIS choice in the matter. I know this whole thing has been so very hard for your family and I am looking forward to the day that this forum doesn't need to exist. Thank you for sharing these parts of the journey for us who are on the front end of this. Most of us will have to face the same scenarios you have been through.

Vicky

RJ,

If the decision were to put it in at that stage, our response might have been different. I think it was the best decision for us right now. As it stands right now, I am not regularly using the tube for feedings. He is strong enough to eat all of his meals, and he is maintaining his weight so for this we are very greatful.

I am sorry for your loss. I have a great deal of respect for your ability to respect your father's wishes and give him control over his passing.

Take care,
Patty