Hit a wall!

[Markbreton]

I've been taking care of Tammy now for over 3 years. She has required help with everything now for about 6 months. Althought our insurance covers home support and they are here most of the time I've never taken a break..... Earlier this week, Tammys pej, not peg, was blocked and all attempts to unblock it were in vain. This required another trip to the hospital. There have been several in the last few weeks for various things...like pneuononia. Anyway I had a breakdown and started yelling and cursing the Doctors and everything else life had to offer. Unfortunately one of the nurses was here and reported this back to her office. Needless to say they, the management staff who are all seasoned RN's, came over to meet with me almost immediately and told me that I needed to get away from Tammy for awhile (respite) so I can recharge my batteries. Because she is on a vent, peg tube, cath, etc. they would like to place her in a hospital for a week or so. I know its the right thing to do but I feel like I'm abandoning her. She cried when we discussed this and we found out that she feels safe when I'm around as I've always been there. (All the help we get is provided by RN's.) Oh I forgot to mention that the nurse that was here when I blew up does not want to return. I'm so torn on what to do...if I don't get a break I'm afraid I'll end up in hospital. If I do send her to hospital then she will feel like I'm abandoning her. Our Dr. is coming over this afternoon to discuss this with us.......oh boy like sucks right now!
Mark

 

[sisgldnhr]

Oh boy Mark......you have to take care of yourself otherwise you won't be able to take of Tammy. I feel for you. There is never any easy answers with this disease.

Bless you both........Sis

 

[beverly rees]

Mark,
I am so sorry to hear about your situation. Please don't be so hard on yourself as this is such a difficult disease to deal with. I have learned from our support group that it is essential for both the patient and caregiver to get as much outside help as possible. They have advised us when your family and friends ask what they can do that you indeed let them know what you need. Most of us like to do things on our own but with this disease life will be so much better with help. It is so important for caregivers and patient's to have time away from each other and interact with other people.

Mark, I don't know if you do have a support system but if not please work on developing one and I assure you that life will be much better. You can not do this alone nor should you. It will also benefit your wife as she will be able also to interact with other people.

I have also been going to a therapist once a month which has been very beneficial to me.

Please do not feel guilty about having a week to yourself as this is something you really need to do for yourself.

Take care and I will keep you in our prayers. Bev Rees

 

[paulw]

Mark;

I am in a similar situation in my home. My wife was diagnosed in late 07 and has progressed rapidly.

We have 4 hrs a day of home health aides weekdays and a public health nurse visits on weekdays to do a tube feeding. (my insurance or medicare requires this). The rest of the time its me and the kids. I would be a liar if I said I have not felt the stress, and honestly, going to work has been my sanity time. It allows me to switch my focus part of the time.

My only suggestion to you would be to find some time for yourself. I had never done it until the last month or so when I started to feel smothered. I have hired a home heath aide on two Saturdays so I could do some work on our house without having to stop to help my wife every 20 minutes. It may seem funny, but the thought of all the stuff that I have let go on the house and yard was adding to my stress. Just the fact that I was free to do what i wanted made me feel better and my wife didn't feel alone. Yesterday I took a vacation day while the aides were at the house and I went did some guy things with my brother. That helped also.

Get some time away for yourself. It will make the time you have with your wife better for both of you.

 

[Micheline]

Mark;
I'm so saddened I have made choices not to go to respite and it torn my family apart. I can see how deeply you love your wife and that makes me smile. Her team is there for you as well, take there advise. Don't make the same mistakes as I did. I haven't progressed to where your wife is but do have a cather, and all my personal care is done by other people. I choose to take that away from my family so they do not have that stress. Yes there are momemts that they may have to help but it is getting less and less for them. it is a hard discion to make but for your health and to help you regroup it is a good idea. Besides you can visit, take her outside, eat lunch, dinner with her anytime you want. You can also ask her team to come and visit her there. You are a beautiful man who loves his wife deeply, bless you for that.

 

[liz]

I had to go to the hospital earlier this week. My biggest fear, which came true, was that I would not be able to communicate my needs to the hospital staff. While I was there, I noticed that the family of the woman in the bed next to me had posted a sign over the head of her bed with special instructions for how to care for her. I wish that I had thought to do this and if I ever go back, I will make sure that I do. This would have cut down on the misunderstandings.

 

[tdamess]

i like micheline post -take time for yourself for a week and go visit her but, take the break

 

[asantiago]

I'm so sorry Mark. That is a difficult position you are in. There isn't just one easy answer to it either. You definitely need some time away to refresh yourself, but I don't think it would need to be a whole week as was suggested. Just because she is in the hospital, I don't think that means you can't go see her at all. Let her stay a few days and you get some rest for yourself, have lunch or beers with some friends. Maybe use your hospital visits to make your time with her about being with her instead of caring for her. I know I found myself consumed with the routine care part and missed out on the enjoyment and entertainment part because there wasn't always time for fun stuff because there was always something care related that needed tending to.

Maybe you could bring her a book of funny quotes and read to her or something like that.

My mom cried when I left for a few days to go be with my family and take a break and it just broke my heart. I tear up just thinking about it because we want to be there and want to make sure they get the best care and get everything they need. The truth of the matter is we can't be everything all the time as much as we want to be. As you have learned that when you spread yourself too thin, something always suffers, in this case it's your well being.

If you can get some time for yourself and recharge your batteries, you will be in a better frame of mind to care for Tammy. It may help you to look at it from the standpoint of you are really doing it for her. You are obviously a very selfless person so do it for her.

Do you think it would help if you talked with the nurse who doesn't want to return. I'm sure she would understand if you are just honest with her and just tell her you were overwhelmed and your emotions got the best of you and you're sorry for how everything happened. Surely someone in her position can understand that and be compassionate about it.


Best of luck in your difficult situation!

 

[crystalkk]

Mark,

I agree with what everyone else has said, couldn't have said it better myself.

 

[Katie C]

Oh, Mark... it's hard. Glen doesn't have as many physical problems yet (except for having to watch him for choking) but he has signs of frontal lobe dementia, so he does require constant "supervision". And yes, I've had a couple of yelling, throwing things breakdowns. Think about it this way.. if you take a break for a few days to recharge the batteries, it's a controlled situation and if there is a real emergency you are capable of doing something about it. If you wait until you are forced into a break because your health and spirit have broken... then the control is gone too. Caregivers need care, that's all there is too it.... give yourself that break, please!

 

[Tich1]

Hi Mark , please listen to all the wise words above and take a well needed break , you really must look after yourself in order to be there for Tammy xx

 

[wanda brittle]

i agree with taking a short break and get someone to talk to

 

[Marjorie R. Wilcox]

Hang in there, Mark. Things won't always be like this. One day this will all be just a bad memory. You are to be commended for all you are dealing with. It isn't easy and it wears you down, and I see that you are so compassionate for the PALS every step of the way. I thing that after a hospital stay of even a few days, you will get rested and be ready for more again. YOU ARE STRONG, and this is probably the worst experience you could have.

I have "been here done that" a few times, wondering if it is ever going to end. It will. You shouldn't have any regrets either. I know that decisions you make now seem so catastrophic right now, but you are doing your very best to make right ones. You can only stand on them as being the best ones.

Take care. Know we care. Get some rest, and continue on showing your love and concern as you already are. Everything will work out in time. Hugs.

 

[Markbreton]

Thank you all, for the kind words and the support. Tammy and I agreed, in consultation with our Dr., that she will go into the hospital next week for 3 days. The Dr. told me that my blow up was "normal" considering the situation I'm in. I have since found out that the nurse on duty when I did get angry reported back that she thought Tammy was in danger..... OUCH! That hurt me, I have never even come close to harming Tammy.... but I guess that is one of the things that they must watch for.
I love all the folks who participate in this forum, there are always good sound suggestions and empathy. I don't write comments often but I visit this forum every day and have been for the last 3 years.
As Marjorie mentioned, this will be a bad memory one day and I cry at that thought. I hope i will have the strength to deal with it when the time comes. Tammy is and has been my life!
Mark