A Lettere Written To My Dear Jack

[Dusky]

Group Member,

A few weeks ago I was having a particularly bad day where I seemed to be dwelling on some negative aspects of the 10 month period when I took care of my terminally ill partner. There had been times when my perception was that I had not been as kind and considerate as I should have been. Caretakers sometimes get overwhelmed - I know I was - and then when your loved one dies you are left to deal with potential guilt or regret. This has been part of my story.

What you're about to read was my way of putting it all in perspective. Please read the letter below to My Dear Jack - written on 10-14-05 - "Good vs. Bad". Here it is:

My Dear Jack, 10-14-05

Sometimes I think that I spend a lot of time remembering more of the bad things that I may have done during the time that I took care of you. I’ve had one of those days when I’ve been betting myself up – so I have decided to make a list of the Good vs. the Bad and see what the list shows – hopefully this exercise and letter to you will help:

GOOD VS. BAD

Bad:

1. There were times when I would get very upset when I was cleaning you, or when you would not follow my instructions to stand. I know we seemed to start almost every day with a verbal struggle until you became bed ridden. I should have known better – but I did not – I feel bad about this. I know I apologized most every time I did this – Please know how very sorry I am for this shortcoming on my part.

2. One time when you would not swallow your pills – it felt like you were biting me and I tapped you on your check – scolding you not to bit me. I should have know better – although I did not recognize it – your illness was causing you to chew when you thought you were trying to swallow. I am so sorry.

3. I should have spent more time just sitting with you – when you were in the Living Room (and could walk) and then when you were bed ridden. Sometimes you just wanted to sit and talk – some times I did that and other times I did not. The only excuse I have is that I needed to try to keep busy doing other things – I was almost crazy with watching you slip away from me – now I wish I had just sat there and been with you all the time – but I also know that caregivers need to pull away also. Despite knowing that I still feel bad for not spending more time with you.

4. Some times you had so many request during a day that I would get short tempered when “another request” was made. I should have been more understanding – after all you could not see. But I did apologize many times – perhaps not as often as I should have. For those times I did not please know I am sorry.

5. I did tell you I was going to put you in a home when you bit me. I hope you know that was out of frustration – there was no way you were ever going to go to a home other than Our Home – and that is where I kept you until you died.

Good:

1. I made all the meals – except those brought to us by friends. I think I became a half way decent cook – especially breakfast – you even said that my breakfasts were great.

2. I fed you when you were not able to do that any more – and I remember really enjoying being able to help you with this. I cooked the best I could and you seemed to enjoy eating even though you were so ill.

3. When you had to pea – I held the urinal for you – and you did have to go to the bathroom a lot – just the way your system worked – you had to pea a lot even when you were well – lol.

4. I gave you showers daily – when you were able to stand up – and then gave you sponge baths in bed when you were bed ridden. This included cleaning your bottom.

5. I took you to the bathroom every time you needed to have a bowl movement – this was pretty labor intensive when you could still stand – I may not have been as patient as I should have been but we got the job done.

6. I kept your briefs clean and pads clean when you were bed ridden – everyone from hospice told me I was doing a good job at this. I had no experience – but I sure tried hard.

7. You had many requests – such as “Winto greens – or drinks – or popcorn – or a comb – I tried to get you all the things you needed. I know sometimes it was overwhelming (the requests were many) but I really did try my best.

8. I shaved you nearly every day – some days I missed – but for the most part I got this done.

9. I scratched your back – as often as I could when you asked.

10. I massaged your legs – and kept them elevated when you had a swelling problem.

11. I kept the house clean – this kept me in busy work so I could escape mentally from what was happening.

12. I paid all our bills and kept all the financial items in order.

13. I filed for your Private Disability Policy and for Social Security Disability – got all that money coming in – what a load of paper work.

14. I kept all the Hospital paper work straight – and tried to share all that with you so you would feel on top of your medical treatment – this was difficult sometimes because the fact that you were blind and the nature of brain tumors cause you to have delusions and this complicated how we would sometimes be able to interact.

15. I sold my truck and then took out a HEL and bought your car – So much paper work when there were other greater concerns – but somehow I managed.

16. I wrote tons of e-mails trying to keep friends and family aware of what your latest condition/problems were. I made tons of phone calls – and you know how I hate the phone.

17. I was able to keep the yard work done and everything trimmed – Thank God we have mostly desert landscaping and all on a watering systems.

18. I extended the Pool Warranty – and dealt with some problems with the pool – God I hate that thing.

19. I took you on walks out side – and down the street – when we were able – and then in the wheel chair when you could not walk. It was not often that we could do it – but when possible – and I had some help we did it.

20. I kept you home for the entire time – and you died at home. I remember telling you a number of times – maybe more – that I was going to keep you home and I would always take care of you – not to worry.

21. When you could still walk – and especially on your time home in December and January – we would go in the car for appointments and to the Arizona Council for the Blind – even out to eat. This was a very labor-intensive task – walking you to the car – getting in and out – because you were blind – it was hard on both of us. It is really amazing what we were able to do.

22. When possible we went to some social outings also – to Toms house (Xmas and Thanks giving and Easter), to my parents, to restaurants – we tried to make this as normal as possible despite the nightmare we were both living.

23. I got you all your pills – and kept track of them all. The Hospice people seemed to be pretty impressed the way I was able to keep track of your medication.

24. I helped you through three seizures – the last one just before you died – where I had to give you a Valium enema to help stop it.

25. I called 911 two times – once in October – when you went blind – this one I am sure saved your life and again in January when you had one of your seizures. I know sometimes you may have thought it would have been better to die – but I am so glad that I had something to do with saving your live at those times – At least I was able to have you with me for a while longer. A hard as it was I treasure even the last 10 months I had with you.

26. I organize your 56th Birthday party – what a blast we had – you said it was the best BD you ever had.

27. I wrote your Eulogy and planed your “Celebration of Life”– even when you were still alive – I knew you were going to leave me and I had to be prepared – I wanted it to be the best Eulogy and “Celebration of Life” ever – It was so hard for me to do this when you were still alive and with me. I think what stopped me from involving you in some of these plans was because you seemed to forget that you were dying and I saw no point in keep reminding you about this – after all the nature of your illness and blindness seemed to make your circumstances different than the norm. Yes you should have been involved in some of these processes – but with what was happening to you – I think it was the best thing for you - that I did that for you.

28. I made the decision to stop having you take your Chemo drugs. As hard as this was for me I think it was the right decision – and I’m putting this in the “good” column. Giving you more Chemo was just potentially causing your immune system to create even more problems like the warts. I knew you would not want to live longer if the quality of live was not there. So rather than keep you alive – for me – I may have let you go a short time earlier – but I did that for you. Jack this really was an act of love. I hope some day someone does the same for me.

29. I was your Advocate for the entire time you had to be involved with the hospital and medical community – I fought for you “tooth and nail” – I’m sure many of these folks though I was insane – but I wanted the best for you and when my perception was that you were not receiving the finest care I was “in their face”. I ensured that you had the best there was to give.

Now that I have finished writing the Good vs. the Bad – I think I feel better. Yes I did some things that were not nice, kind or considerate – but when I look at what I did that was good - I believe the scales may be tilted to that side.

I have had a rough day today – I was dwelling too much on the 5 Bad things and not the 29 Good things that I was able to identify here.

I’m very sorry for the 5 Bad things – but I am also very proud of the 29 Good things that I accomplish during this last 10 months of your life. I love you as never before.

Your John Boy

__________________________

I hope sharing the above letter I wrote to my Dear Jack is helpful to some of you. Perhaps you have a similar experience - or moment to share. I know that writing letters to my loved one and keeping a Journal has been a tremendous help to me through this long passage.

All my best to you all,

John - Dusky is my handle on here.

Love you my Sweet "Jackie O"

[kayc]

I too write...I have written an ongoing letter to my husband since he passed away...I don't know if he can know what's there or not, but it helps me anyway.