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trulyblessed Asked July 2014

I am expected to care for my own dying Dad. How do I do it?

9 months ago I lost my beloved father in law, then hospiced his wife. So much death and dying is just overwhelming to me. Yet, I believe that to care for my father in his time of need is what I have been being prepared to do by all that has occurred. I just don't want to be broken in the process by a burden I am not strong enough to bear. What type of support should I seek?

Jaye Jul 2014
I would not call it bad luck... If indeed someone can care for a loved one there are facilities that will. Many families chose to care for their own and I do think they are to be admired. Hospice is wonderful (in my experience) and I would strongly suggest getting in touch with one for help and information.

Roscoe888 Jul 2014
Some of us have a normal life and don't have to deal with this......others have the bad luck of being bestowed with the burden. Just do it....and suffer silently......and chalk it up to having bad luck. I have bad luck just like you.

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sshuchart Jul 2014
I would suggest you contact a hospice for resources and guidance, as well as support for yourself. Even if your father is not ready yet for hospice care, see if they or another local hospice have a palliative home care service that might provide services as well as support. Hospices are the experts in getting through end of life stressors and needs. I suggest you seek out a hospice that is well established in your community, sees a large volume of patients, and offers services over and above what is mandated by Medicare.

brentonr Jul 2014
Get help anywhere you can! Friends, relatives, Church family. Also if your father is in the process of dying, he should qualify for hospice - they are absolutely WONDERFUL! Try to stay strong, there is help out there. Contact your Area Council on Aging and other government agencies as well. Good luck!

hadenough Jul 2014
It is a wonderful thing that you are doing and there are great suggestions here. First I would protect my own assets. If he has the assets for his care those should be used first. You are not doing him a favor by spending your own money for his care. If the time comes he may have to spend down anyway so use it while he can still enjoy it. Good luck and hang in there.

LindaH52 Jul 2014
You will be at peace knowing you were there for your father. I took care of my Dad. I was holding his hand when he took his last breath. It was very hard to watch him go but I found peace knowing I was there for him at the end.

GardenArtist Jul 2014
Bookluvr, is your support group hosted through a hospital or SNF/AL facility, or is it an independent group? It sounds like it's the best I've ever heard of. I'd like to find something like that in my area. Any info you can share would be appreciated.

IloveMom Jul 2014
You will get the strength. YOu have before, and you will again. Find help, hospice, your support group, friends, family, church. this site. TAke care.

Jaye Jul 2014
I have had the privilege of caring for my grandparents and my Father... That has been my position in the family. It has been almost 4 years since my Dad went to heaven and I miss him every day. I am comforted by the fact that her was able to die peacefully with dignity at home!!! He had cancer and we had many talks about dying... He was NOT afraid to die however he was somewhat concerned about his process... We were able to keep him comfortable and he was very peaceful... I would never tell you it is easy, but I would tell you, you will be glad you did. I would encourage you to find a support group and also engage hospice. It is a medicare benefit and they are extremely helpful!!! take care and God Bless!

Semba2 Jul 2014
Family,Friends And Faith. It is a hard task you are shouldering, but know that many will keep you in their prayers. If you can't find a group start one.
Many Blessings.

moondance Jul 2014
Death is very overwhelming, but very natural & I speak from having lost my 2 daughter's recently to Eternity.
You ask, "How do I do it?", You do it a day at a time & you look to agencies that can help you with this process in your area. There is the Council For The Aging, Adult Protective Services & many others. Do a search on line to find out what is available for you in your time of need & PRAY....

Care1975 Jul 2014
Take care of yourself, make sure you do something that makes you happy every once in a while. For me, helping my parents made me happy at first. The more involved it got, the more I neglected my own life. I tried to meet their needs above my own, and beat myself up when I failed. Don't do that. Look for support early on and connect with other caregivers who understand what you are feeling. It will be a roller coaster of emotions but in the end you will be glad you helped.

littletonway Jul 2014
Sit down with family members and really talk this through, especially your spouse and children. They are your first responsibility. Read the posts on this site to get a feel for what the real world of caregiving is all about. You can see that your Dad receives the best care available without sacrificing your life, family and health. Caregiving may not break you but will certainly change you. Your heart can be in the right place but is your body and mind up to the physical and emotional challenges you will face 24/7. Best wishes.

MaggieMarshall Jul 2014
First, you decide that the money and assets he's accumulated throughout his life are there for you to use for his care. They aren't there for you (or anyone) to hoard and save for a rainy day. It's already pouring outside.

Then "go shopping" for the resources you need for him as a patient -- and you as his caregiver. Some of them will be completely free. Some of them will cost money. Spend it. Here's a list of the resources we take advantage of for my 87-year-old mom with dementia and close to end-stage congestive heart failure:

Wheelchair and best seat pad money can buy to prevent pressure sores, more easily move her in/out of the house, and keep her lightly restrained so she doesn't forget she can't walk alone, get up and fall. (Free)

Oxygen Generator. Mom wheezes on exertion, often has some fluid buildup in her lungs from her CHF, and sometimes wheezes when she's partially reclined at night. (Free)

A walker for her safety. This is absolutely essential for my mom; a safety convenience for others. (Free)

We had safety grab bars installed in our bathroom (outside and inside the walk-in shower), removed the bathroom door for ease of access with her walker and put up a pretty neutral cloth shower curtain on a spring rod in the doorway. Very convenient. The same guy that did that built a platform for our patio doors so we could more easily assist mom in/out of the house to the back deck; and another one for the front entrance that took a "too-high step" down to a more convenient level for her wheelchair. (Cost $350 all together.)

We hire companion care for mom that costs $22 an hour. We use them frequently to give Tom & I time to socialize and free us up to do the things we "used to do".

Mom goes to Adult Day Care (which I call her Social Club) once a week. (Cost $66 a week). I use professional transportation to get her there and back. (Cost $60 round-trip) She has a special low-salt diet, so I pack her lunch. Bought her a cute thermos lunchbox for $30 that delights her because everyone tells her how cute it is.

We hired a woman (professional care giver) to come in once a week to give mom either a sponge bath or a shower. ($30)

Her doctor makes house calls. It's a service here in the Chicago area. (No cost.) I actually have her doc's cell phone number, believe it or not. (The whole concept is invaluable.) (Free)

When mom needs blood work done, her doctor orders an in-home visit so we don't have to transport her to the hospital for lab work. (Free)

A podiatrist comes in every six weeks to cut mom's toenails. (Free)

By calling our county's senior services department, mom receives a $1,000 yearly grant to use for her respite care. I use this money and more to pay for Comfort Keepers.

The doctor filled out paperwork so mom could get a handicapped placard for use when anyone is driving her anyplace. (Free)

Depends Maximum Absorbency Briefs. These are great. Go on like panties. Very absorbent. Works overnight. I have surgical scissors (with one blunt blade) and cut them off her. Helps make the changing process easier.

We have a electric hospital bed for mom. Serves many wonderful purposes. First, it easily elevates her head to help her breathing; next, it has 5-foot bed rails 12" high that help to keep her safe overnight; the foot of the bed rises also, so that helps with fluid pooling in her feet and legs as well as another way to keep her safely in bed at night. (Free)

We asked the doctor for medication to help her sleep at night. She gets a mild sedative and a narcotic pain reliever 30 minutes before bedtime. Still, I'm up twice a night with her and have to get her up by 6 AM usually, but it's much better than it used to be.

If you think your dad may be ready for hospice, my advice would be to sign him up. His doctor would make that determination. This puts many more resources at your disposal. Don't be afraid of it. You can always pull him out if something serious arises that they won't treat him for.

We bought mom some of the cutest clothes ever...lots of sparkly styles. This helps her mood immensely. She wears them to her social club and whenever someone is coming to the house. Otherwise, I keep her in pretty little housecoats from Blair. Very inexpensive. Easy on/off.

We bought mom fur-lined Crocs. They're slip-on and keep her feet warm. Non-skid. We bought several different colors. She's always been a fashionista. ;)

That's all I can think of right now. I hope you find some of these suggestions helpful. As you probably noticed, many of these things are for my convenience as her caregiver. I can't emphasize the value of that aspect enough.

YoungestOfSix Jul 2014
Practical stuff:
1. Get Power of Attorney and Medical PoA
2. Find tour local Carer's association (will give you vital support)
3. Ensure your dad has written a will (ensure you have also written a will setting out wishes for your father's care should, God Forbid, you precede him.
4. Ask you dad what he wants (he may want to go into a care home/hospice so as not to burden you. You need to check his feelings)
5. Take very good care of yourself (MAKE time for yoga/meditation/ling walks/socialising, otherwise you are putting yourself at risk of depression/weight gain)
6. Check if any grants available to make the house safer/suitable for Dad.
7. Reach out to extended family and ask them to step in to give you respite/ the odd weekend off.

Finally, give yourself a big hug. You sound an amazing person. God Bless xx

paryogi Jul 2014
I helped my mom care for my dad who has Alzheimer's. I would go to their house on weekends starting from his diagnosis in 2005. My mom then suffered a massive heart attack and I cared for them both starting in July of 2008. Mom passed away in 2010 and I'm still caring for dad. I'm happy to do it, however my life and health has definitely been altered. I neglected my own care, gained 60 pounds and watched my Cholesterol rise greatly. Do it if you decide it's right for you, however don't neglect your own health in the meantime. Buy a treadmill or other piece of exercise equipment and find other ways of releasing stress that aren't destructive (like me and eating sweets, carbs, etc.) Keep in touch with friends. Plan small getaways even if it's a long day out with friends. There are lots of resources through Medicaid and the VA to help with respite. Put the help in place asap. If it's not in your heart to do it, it's perfectly fine and you can work to find a facility and visit often. If it's in your heart, then by all means do it. It's been a very rewarding experience for me and I wouldn't change it for a minute. However, self care is so important and keeping your own life moving forward. Best to you!

DaveIFM Jul 2014
Remember to use his money not yours to pay for expenses such as hiring caregivers. Who is his DPOA and health-care proxy?

Sodonewithsal1 Jul 2014
You say you're "expected" to care for your father. Are other family members expecting you to do this, or are you referring to societal expectations? If you have misgivings, don't feel like you're obligated to do this alone. Do you have siblings who can help?
There is outside support available. You can try contacting your local office on aging, and getting hospice involved.

bookluvr Jul 2014
Depends on what stage is your father, what does he qualify for, etc... You did not mention what is his terminal illness. For example, if he has cancer, you can contact your local cancer support group or organization. You can also contact the elderly local/federal govt program to see if they will provide you with respite. My dad is age 85. He's enrolled in the meals-on-wheels for lunch. He also applied for the local/federal program for elderlies who have dementia, handicap, etc... He's bedridden. They allocate 4 hours a week to service him. He requested that they break it down to 1 hour, 4 times a week service. All he wants is for them to come in and sponge bath him. That's all. They can come in for 4 hours a week, so that the family caregiver can go and do whatever they want - shopping, movies, etc...

Will you be having someone to help you with the caregiving? Like taking shifts? That would help so much. I'd hate for you to finally have a caregiver's burnout - now that it's your father.

Most important is your local caregiver support group. Ours meet once a month for 3 1/2 hours. Each morning, they provide a light breakfast (fruits, donuts, sandwich, etc...) and a nurse to take our vitals. They sometimes invite guest speakers who teaches us how to meditate, exercise, take care of the bedridden, etc... One time I attended, we watched a funny DVD movie. Once, I attended jewelry bead making, etc... Several times, we did have a serious discussion about our caregiving woes, etc... At 12:00noon, they bring out freshly hot real lunches - ordered from the different restaurants.

You're truly blessed to be able to do this - a 3rd time. And a big heart. {{Hugs}}

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