Caregiver Wisdom

[JandJ]

I haven't posted in quite some time but I've found a lot of comfort on this board and I hope I've been able to provide some support over the years.

I could use some words of wisdom and support from caregivers.

Background: My mom (my best friend) passed in 2005 (4 months before my wedding) and my father (I've always been daddy's little princess) was diagnosed with multiple myeloma in 2004 He was given 3 years, which was this past April. When mom passed daddy moved in with my brother and SIL and he was still driving and doing things for himself. My sister has 2 young kids at home (one who is mildly autistic) and another child in college, so she is not in a position to help as much as I know she'd like to (I'm the baby of the family by many years). Daddy took a turn for the worse the end of August and became almost completely bed ridden. He was put in-patient at Hospice in September and they gave him 4 weeks. He stabilized, though not improved, and now has to leave Hospice. I completely understand Hospice's perspective. Their in-patient unit is for end of life care, not a nursing home. However, daddy still has to have 24-hour care. He cannot have a catheter - all 4 attempts to use one have resulted in horrible infections; he can use a commode but cannot get out of bed or back into bed without assistance; he cannot move his left arm any longer and his legs are practically useless except to scoot from the edge of the bed to the commode; he cannot sit up for more than 10 or 15 minutes; but his mind is (mostly) clear and he still has a fantastic sense of humor.

So, since daddy has to have 24-hour care and he refuses to go to a nursing home - he literally begged me to never put him in one and I can't say no to my daddy - and my brother, SIL, and sister all work full-time and I'm not working right now, daddy will be coming to live with me and my husband.

DH is a saint to agree to this, but we've only been married 2 years. We're still in the honeymoon phase and used to going off and doing whatever we want whenever want. Also, I have my own medical issues (infertility) plus my MIL is not well at all. It's a lot to take on but there is no choice. My siblings cannot take care of him, I cannot put him into a nursing home against his wishes, and he and I have always gotten along so well I feel we'll do o.k. all day every day together. I will have Hospice in whenever I can get them and I've signed up with a home health care agency for overnight care because I cannot do all day and all night.

I guess I just needed to vent a little and see if any of you who are full-time caregivers can give me some advice

 

[AnnaS]

You are doing a great thing. I am sure it will be hard and you will have some tough moments but down the road, you will not regret doing this one bit.

Try to get someone from homecare or privately for a few hours here and there during the day so that you and your husband can have a few minutes alone and keep your sanity.

 

[Jcricket Fan]

JandJ my thoughts are with you.

Being a caregiver is a huge responsibility and you will need to get as many people involved as you possibly can. Burn-out is incredibly high for caregivers so you will need to make yourself care for you as well!

Here is a link to the National Family Caregivers web site: http://www.nfcacares.org/

On the web site you can connect with other caregivers and learn all about what to do for your dad and yourself & DH.

My DH is a caregiver for his mom. The primary caregiver is DH's dad who is really in need of care himself but neglects himself. The care is spread out over DH, his two sisters and his dad. My MIL has been totally incapacitated for the last 2 years. She does have a permenent catheter which makes life easier for everyone involved.

My FIL has a Hoyer Lift (It looks like a big sling and a chair that he straps her into and raises her up off the bed to her wheelchair) to get MIL out of bed in the morning (which he does alone) She spends the day sitting up in a recliner and when night time comes the "kids" take turns feeding & getting her ready for bed. It takes 2 people and the lift to get MIL back to bed at night.

Again I can not stress how high the burn-out and depression rate can be. Please try to avail yourself to any and all help and resources. It will make the time much better for all of you.

It is good that you can do the care in your home. DH must travel 45 mins. each way to his parents house. He doesn't return home until 1:00am most nights he goes. If his mom outlives his dad (which is quite possible)we would then have MIL come live with us so it would take some of the pressure off the family with both DH & I and his sisters being able to do the care as well as getting outside nursing assistance which my FIL will NOT do.

You will be in my thoughts. You are doing a very loving thing. Please feel free to contact me if you have any specific questions or just need to talk.

Peace,

Colleen

 

[JandJ]

Thank you for the kind words and encouragement. I know it will be an adjustment and I know I have to take care of me, and DH, top of the list, but it is the best thing I can do for my daddy.

JCricketFan - thank you for that website! I have already downloaded some of the checklists and forms.

 

[Mackey Mouse]

JandJ... can I just say here your post touched my heart so.. Know that you are doing the right thing here as your Dad's mind is fine and you can have that extra time with him talking and just letting him know how much he means to you..

Hugs, please come here when you need us, we are here for you to buck you up if you are feeling down or just listen...

I will keep you all in my prayers..

 

[safetymom]

You are doing a wonderful thing. It isn't easy being the caregiver so please come here and vent.

I will also be keeping you all in my prayers.

 

[minkydog]

Definitely get whatever home health you can get. This is a huge project. Ask your siblings to contribute financially to your dad's care. Will your DH be helping you with his care? That would help a lot, if he's comfortable doing it.

I cared for my dad the last 30 days of his illness. It was only a month, but it a loooong month. Dad was about where your father is and needed constant care. It was grueling--and he wasn't even in my home, he was in the hospital!

Take care of your own health--sleep well, eat good food, don't neglect to exercise.I would never discourage you from caring for your dad in his final days. It's the toughest job and it will change your life.

 

[kesha]

JandJ, My Heart goes out to you because you are going to have your hands full. My dad has lived with me for 5 years since he had a massive stroke. I know what an adjustment this has been for my husband and I and we're been married for a long time. I know how you feel about wanting to keep him out of a nursing home. I hope that some of your family members will give you a break sometimes. If I had to do it again I would make the same decision but sometimes it is not easy. Our life has completely changed in more ways than one. Please get any help you can. Trust me, there are going to be days you are going to question yourself on the decision that you have made.

 

[JandJ]

minkydog and kesha - thank you for your insight. It's been 2 weeks, and I hate to say it, but it feels like 6 weeks at least. I'm doing o.k. but I know I'm not eating right and the only exercise I'm getting is walking back and forth to daddy's room and lifting him. I am concentrating on doing better though, eating better, and drinking more water. I don't regret the decision but it is not easy. My DH is a saint. On Saturdays he cares for daddy so I can sleep late and run errands. I am so lucky to have him!

Daddy is failing. We have Hospice and the nurse comes out a couple times a week. Today he said it won't be long before daddy is on oxygen, but we may be able to hold off on that for a couple of weeks. He is in a lot of pain and unfortunately I have to keep turning him every 2 hours because he is getting the beginning signs of bed soars. The turning is very uncomfortable for him. I always thought bed soars were what happened in bad nursing homes, but they can happen anywhere, and so quickly. Daddy spends 90% of his time on his back and because he is so thin now the bones are just sticking out and the skin is breaking down. It's the last thing he needs!

My sister visited this weekend so DH and I were able to get out alone for an hour, which was marvelous! I used to take going out to lunch with DH for granted and now it's like a special treat

Thank you all for your support!

 

[Disney Doll]

I am a nurse and have cared for both my late DFIL & DMIL in their home, so perhaps I can give you some practical advice.

1. Pain. He should be as pain-free as possible. Speak to the hospice nurse about speaking to the doctor about starting/increasing pain medicine. If you feel comfortable doing so, you can speak to his doctor yourself. If he is on hospice, I assume his level of care is "comfort measures only" so have them do what they need to in order to keep him comfortable. Not all pain medicines are narcotics that will "snow" him, so have them look into some of those if that is a fear. My DFIL had very good pain relief with a medication called Ultram (generic name Tramadol).

2. Care Required. If it seems as if he is getting close to "end of life", you may be able to increase his hospice hours. I assume that you have some home health aide (HHA) time, where a nurses aide/HHA comes in to wash/bathe/feed him, and do some of the other things required for his care. When my DMIL was dying at home, the HHA came in for 2 hours in the AM & 2 hours in the PM. The AM HHA would wash her, change her nightgown & sheets and get her breakfast. She would throw in a load of my DMIL's laundry (night gowns, sheets, incontinent pads etc.) and generally straighten up DMIL's "area". Our gal was also nice in that if she had some extra time, she'd run the vacuum a bit and straighten the house a bit in general, but they are only required to do is everything that pertains to the patient. The PM HHA would take the clothes out of the wash (the ones that the AM HHA had put in) and fold and put them away, freshen DMIL up for bed, help her with dinner, do a little more straightening of her area. Basically the good thing was that it was 2 hours where we didn't have to be directly responsible for DMIL. ONce we were familiar with the HHAs, we could trust them for a few minutes to run to the store or something. Plus it was a different face for DMIL to talk to...I imagine she got pretty sick & tired of looking at us. . If you do not have HHA time, get some now.

3. Bedsores. All the ambulance-chasing attorneys who advertise on TV about bedsores being due to poor care have given people the wrong idea. They do not occur only in bad nursing homes or from lack of care. You can be taking the best care of someone in the world, and if the conditions are right, bedsores are almost impossible to prevent. Someone who is terminally ill is the perfect candidate...limited mobility due to pain and weakness, poor nutrition, poor circulation due to limited mobility and the general decline of the functioning of the body systems, incontinence. Some of the preventive things for bedsores include:
~Pressure preventing mattress. There are many different types...air, gel, alternating pressure air, eggcrate. If he's not on one, get him on one.
~Meticulous skin care. I know it's painful for him to turn, but if you can get his pain under control, then turning him will be easier and you will be better able to provide this care
~Turning and positioning him every 1-2 hours. Again, get his pain under control and he will tolerate this better.
~Inserting a catheter. I know you said he kept getting infections with them, so when one gets inserted get him put on an antibiotic specific for urinary tract infections as prophylactic measure...usually Cipro or Bactrim is used...sometimes Macrodantin. When we had this problem with DMIL, our MD was great about just keeping her on the antibiotic throughout her whole decline, so we could keep the catheter in. There was no point in worrying about antibiotic resistance from the overuse of the antibiotic...she wasn't going to survive, so it was a moot point.
~Nutritional support. If he doesn't feel like eating, try some of the supplemental shakes like Ensure, Boost...those types of things. Mix them with ice cream to give them some added calories.

The thing to remember is that some of the usual "tenets" of healthcare go out the window when caring for someone who is terminally ill. The antibiotic thing for example. No sense in worrying about someone who isn't going to survive developing antibiotic resistance.

I remember when DMIL was dying, one day DH was with her and she started seizing. We had some Morphine in the house for her for pain control, which she hadn't really needed up to that point. DH remembered me telling him that if his mother seemed to be in pain or restless or if she started having trouble breathing, those could all be signs of pain that she might not be able to articulate (she had a brain tumor, so her communication was somewhat stilted) and he should give her some of the Morphine because it would relieve the pain and have a sedative effect. So he & the HHA were there one day when she started seizing, and he gave her some of the Morphine. Of course, he had no idea how much to give, so he sort of did an "estimate"...his words to me later were "what was I going to do? Kill her???? She was terminal, I knew that, she was sezing, which led me to think that the end was close". He was absolutely right in his logic. FTR, she didn't die that day, but did die 5 days later, so his Morphine dosing didn't do her in. It's a tough time of the year to do this too. DMIL died December 9, 2001, so we were kind of going to that year's holiday season with this cross to bear.

Please feel free to PM if you have questions or if I can be of any help. You and your family are in my prayers.