Dear Friends

I have been informed by the Nursing staff at the hospital where my mum is a patient that she is making good progress.

The tracheostomy tube has been removed as have the stiches/staples in her neck and chin. She is able to get about and is now able to sip a little water. She is being fed through the PEG, which is a good thing right now because she really isn't up to eating. She managed to eat some ice cream yesterday, but it took absolutely ages to get it down and she had to wait for it to melt completely in her mouth to swallow it. She found it quite difficult.

The speech therapist comes once a day and has informed me that she is very pleased with Mum's progress. She said that she thinks Mum is doing really well considering it has only been a week since her radical operation.

However, depression has set in big time. I can't cheer mum up. She feels so frustrated because her speech is not the same. At the moment she has to put her hand over the hole where the trachy was because it hasn't healed over yet. Her voice sounds very deep. She says her tongue feels very heavy/thick and she struggles to move it around in her mouth in order to talk. The speech therapist has advised her to keep up with the talking and says it will get better with practise and time. Mum is not convinced.

I think she is expecting too much from herself too soon. What do you think? How was it for you after your operations? Did you feel depressed?
Did it get better? Did your tongue feel heavy?

What can I do to make her feel that the operation wasn't a mistake? She says she wishes she had never had it done now.

Kathleen

Thank you for the update, Kathleen. It is good to hear how well your mum came through her surgery. I will offer an unqualified YES to the question about expecting too much too soon. As far as the depression, I think you need to have a conference with her doctor about that. I did not experience any, but my middle name should be Merry Sunshine, so that is no guide. However, I think your mum is a prime candidate for some anti-depressants. Negative thinking is self-defeating. She needs to be able to see how far she has come, and celebrate each little bit of progress. It was several weeks before I could take anything by mouth, so it is quite wondeful that she could get ice cream down. Good for her! You really have your hands full, Kathleen. This is another situation where it is much harder on the caregiver and family than the patient. From what you have written, it seems to me your mum is doing extremely well, so please try not to let her negative attitude affect yours. She will feel better in time. I don't know her age, but you realize, I am sure, that the older the patient is, the longer it will take to heal. Your mum is lucky to have such a caring daughter.
Joanna

Kathleen,
I too, had a trachea, and once it was removed, the Drs. advised me to put my finger over the spot whenever I spoke in order for it to heal better. I was very depressed following my radiation treatments and my voice was awful! I did not even attempt to eat anything for weeks, and I found ice cream particularly difficult because of the cold and the fact that lactose products seem to produce so much mucous.
Your mum's expectations are certainly too high. These things take time. However depression is not a rational thing...it is a feeling.." the old black dog" and one cannot be talked out of it. Please seek help for her rather it is in the form of counseling or ultimately, antidepressants.
My depression passed, my energy level has returned, even though I am still on the PEG and can only eat liquids.
Keep up the good work.

Danny G.

Kathleen,

Your Mom is making wonderful progress. The speech therapist is absolutely right about her speech getting better the more she talks. I had the same operation done and went back to work in 8 weeks and immediately began making presentations to customers. I know I didn't sound the same, but I went on anyway. Oh, I still complained to anyone who would listen, because in my head I did not sound the same. Even today, I don't think I sound the same, but everyone else says that they can't even tell anymore.

Eating will also get better. I used to tell my husband that by the time I finished eating breakfast, it was time to start on lunch. My tongue felt heavy also, this too will diminish with time. However, it has never gone entirely away for me 2 1/2 years later.

My depression seemed to come and go. I regret that I did not seek help sooner, as it came crashing down on me about a year ago. Depression is normal and for me it was because I was impatient to have things be the same again. I finally came to the realization that things would never again be exaclty the same. This was a very hard adjustment for me.

Your mom sounds like she is making excellent progress and she just needs to be patient. Of course this is coming from someone that wanted my missing teeth back before I left the hospital. My doctors and I still laugh that I still don't have them today.

If you think it would help, please send me your address via private email and I'll write a letter to your Mom.

Thinking of you and your Mom. Take care and be good to yourself also.

Anne.

Kathleen,

If your mom is depressed, no amount of good news or cheeriness on your part is going to change her perspective. Have her doctor treat her depression as soon as possible.

It's difficult to do sometimes, but as a caregiver you have to remember that the depression is a sickness too and try not to get too discouraged (or annoyed and frustrated with her).

She does sound like she is doing well, which is great news to all of us. I'm sure you are relieved.

Keep us posted on her progress.

Hi Kathleen, it is absolutely normal for your mum to feel depressed after surgery. I was in a severe depression episode four months after completing radiation and chemo. I had to seek help from psychiatrist and anti-depressants. Support from family is very very important during depression. Make sure you give your mum the right support and if you cannot handle your mum's depression,please do get help from medical professional before it gets worse. Take care.
Karen.

Kathleen, Your Mums progress seems right on target. Remember, this is a slow process so baby steps first, and before long she'll be up and running just as she was before surgery.

As time passes her speach will improve. I lost over two-thirds of my tongue and while I definitely have a speech impediment, I am also very clearly understood. Your Mum's speach may ever be the same, but it will continue to improve as time goes on. A speech theapist will help fine tune her speech and also help with any eating or swallowing problems she may encounter along her recovery road.

Depression is just part of the recovery process for some. Don't hesitate to speak frankly with your physician regarding this issue. Your Mum has been through a lot and still has many months ahead for recovery and adjusting to her "new" life. Things will get better. It make take awhile, and things may get worse before they get better, but Mum will recover.

Wishing you and Mum the best! Keep posting and sharing her progress. Sincerely, Donna

Hi everyone

I am so sorry it has taken me this long to post back. I would like to thank you all so much for all your replies to my last post regarding Mum's depression. Thank you for all your useful advice too.

Anne, thanks for your offer to write to Mum. Yes please I would really appreciate it if you could write to Mum and I think it would really help Mum to hear from somebody who has been in the same boat. I am sending you my post address via your personal e mail. Thanks again.

UPDATE ON MUM: She continues to have up and down days but her mood is getting a bit better. She is still in hospital. It will be 3 weeks on 13th February that she has been in there. Hopefully she is coming home tomorrow, but I do worry because unfortunately she has picked up a new infection. This time in her wrist the area where they took skin for the graft. Mum worries it will go septic and they will amputate it! Will they really do that? Could that really happen? May be we are all worrying a bit too much.

Any way, thanks to you all once again.

I will keep you posted on Mum's progress.

Best Wishes

Kathleen.

Thank you, Kathleen, for the update. Things sound much better for your mum. About the wrist, I can understand how your imagination can run away with you, but if she had an infection that bad, under no circumstances would she be released from hospital. She will most probably be given antibiotics, which will clear it up in a few days. You may safely put the amputation idea out of your mind.
Joanna